Knowledge is power: The Black breast cancer experience
Knowledge is power: The Black breast cancer experience is back! Last year we talked about ways to live well beyond your diagnosis. This year’s program, “A Roadmap to Living your Life while Navigating Breast Cancer,” will discuss understanding your treatment path, the cost of cancer, and navigating relationships.
Session I: Understanding your treatment path
October 27 | 7:00 – 8:30 p.m. (ET)
You’ve been diagnosed with breast cancer, now what?
This session will help you navigate the early days of a breast cancer diagnosis. You will hear from a medical expert on the standard of care, treatment plans for various subtypes of breast cancer, ways to manage side effects, and the basics of clinical trials. You will also hear from a panel of black women, sharing their experiences with breast cancer.
Evelyn Taiwo, MD
Assistant professor of medicine at Weill Cornell Medicine
Attending physician at New York Presbyterian-Brooklyn Methodist Hospital.
Diagnosed with early-stage breast cancer in 2021
Diagnosed with metastatic breast cancer in 2019
Session II: The cost of cancer: Work, financial, and insurance matters
November 3 | 7:00 – 8:30 p.m. (ET)
Treatment for breast cancer affects all aspects of life. Research has shown that the total cost of treatment can range from $100,000 to $300,000. This session will help you navigate the financial burden of cancer treatment, including out of pocket healthcare costs, insurance, disability, and your rights in the workplace.
Joanna L. Fawzy Morales, Esq
CEO of Triage Cancer
Juris Doctor from Loyola Law School Los Angeles
Diagnosed with invasive ductal carcinoma in 2019
Session III: We are family: Navigating relationships
November 10 | 7:00 – 8:30 p.m. (ET)
Getting diagnosed with breast cancer can put a strain on all types of relationships. In this session, you will hear from a panel of black women, sharing the good, the bad, and the ugly of thriving with and from breast cancer and their relationships with their loved ones. You will also hear from a psychosocial expert to share tips and tools for having the relationship you want with yourself and with those you love.
Stephanie Broadnax Broussard, LCSW, ACHP-SW
Licensed clinical social worker (LCSW)
Advanced certified hospice and palliative care social worker (ACHP-SW)
Certified advanced care planning facilitator and trainer
Diagnosed with early-stage breast cancer in 2021
Diagnosed with metastatic breast cancer in 2005
Marilyn Drew Thomas, MA
Diagnosed with ductal carcinoma in situ (DCIS) in 2021
Knowledge is Power: The Black breast cancer experience is co-created by Living Beyond Breast Cancer staff and our Black Breast Cancer Advisory Council and Board, which includes leaders of partner organizations: the Chrysalis Initiative, For the Breast of Us, My Style Matters, Tigerlily Foundation, Touch the Black Breast Cancer Alliance, and select members of LBBC Board of Directors and LBBC Medical Advisory Board.
Black Breast Cancer Advisory Council
CHAIR: Jamil Rivers, The Chrysalis Initiative
Vivian Jolley Bea, MD, FACS, Weill Cornell Medicine
Shanda Cooper, MSc, Tigerlily Foundation
Ricki Fairley, TOUCH: the Black Breast Cancer Alliance
Atiba Page, LBBC Board of Directors
Marissa Thomas, For the Breast of Us
Black Breast Cancer Advisory Board
Monique Gary, DO, MSc, FACS
Celeste Vaughan-Briggs, LCSW
Evelyn Taiwo, MD
Speaker, Understanding your treatment path
Evelyn Taiwo, MD is an assistant professor of medicine at Weill Cornell Medicine and attending physician at New York Presbyterian-Brooklyn Methodist Hospital. Dr. Taiwo served in a leadership role as the director of the breast cancer center overseeing the operations, research activities, clinical care delivery, and education at Kings County Hospital in Brooklyn.Read more
Panelist, Understanding your treatment path
Novella Brown is a single mom of one child, a foster mom of over 90 children including some additional family members, and a breast cancer survivor. She was diagnosed with breast cancer after she discovered dimples on her right breast after showering one day.Read more
Panelist, Understanding your treatment path
Diagnosed with Stage IV breast cancer in February 2019, Atiba has had over 100 doctor visits, 6 rounds of chemotherapy, over 30 rounds of radiation treatments, a single right mastectomy, as well as gamma knife and MRI thermal ablation brain surgery. Atiba reports that she has no evidence of disease (NED) since May 2020.Read more
Joanna L. Fawzy Morales, Esq
Speaker, The cost of cancer: Work, financial, and insurance matters
Joanna L. Fawzy Morales, Esq is a cancer rights attorney, author, speaker, and CEO of Triage Cancer, a national, nonprofit organization providing free education on practical and legal issues that may impact individuals coping with cancer and their caregivers, through events, materials, and resources.Read more
Panelist, The cost of cancer: Work, financial, and insurance matters
Kiana Wooten was diagnosed with invasive ductal carcinoma in October 2019 at the age of 34. Her treatment plan included genetic testing, chemotherapy, a bilateral mastectomy, as well as hormone therapy for five years. She has opted to be flat because of serious complications during her reconstruction process.Read more
Stephanie Broadnax Broussard, LCSW, ACHP-SW
Speaker, We are family: Navigating relationships
Stephanie Broadnax Broussard, LCSW, ACHP-SW is a licensed clinical social worker (LCSW), advanced certified hospice and palliative care social worker (ACHP-SW), and a certified advanced care planning facilitator and trainer. Stephanie is the director of palliative care and social work at Texas Oncology and a therapist in private practice.Read more
Panelist, We are family: Navigating relationships
Latoya Bolds-Johnson is a native of New Orleans, Louisiana, and currently lives in the nation's capital with her loving husband and three young daughters. Latoya was diagnosed with stage III triple-negative breast cancer in July 2021 when she was 36 years old.Read more
Panelist, We are family: Navigating relationships
Thomasina Butler, a retired nursing technician, wants to help people with metastatic breast cancer get factual information about wellness and support from evidence-based sources. She is a published author of two books and a writer of short stories and poetry.Read more
Marilyn Drew Thomas, MA
Panelist, We are family: Navigating relationships
Marilyn Drew Thomas, MA, was diagnosed with ductal carcinoma in situ (DCIS) in January 2021, while still grieving the loss of her beloved husband of 41 years to cancer in 2019. Her incredible sons, who had been caregivers for their father, rallied and cared for her when she was diagnosed—praying, of course, for a better outcome after having lost their dad. Despite the triple-grief-loss of her life partner, the pandemic, and breast cancer, she is grateful for her many blessings: prayers, family, and great medical care.Read more
Moderator, Knowledge is power: Black breast cancer experience
Tiah Tomlin-Harris was diagnosed with triple-negative breast cancer in 2015. She is an advisor, guest speaker, team member, camp buddy, volunteer, and support group facilitator for a variety of organizations that focus on women’s and breast health, including serving as a Young Advocate for LBBC.Read more
Session I: Understanding your treatment path
We will first hear from Dr. Evelyn Taiwo, an assistant professor of medicine at Weill Cornell Medicine, an attending physician at NewYork-Presbyterian Brooklyn Methodist Hospital. As a researcher, she has contributed to several studies on cancer presentation in urban and minority patient populations. For Dr. Taiwo's full bio, please go to LBBC.org. Dr. Taiwo is going to start off with a short presentation, and then we will be joined by our two panelists: Novella, who was diagnosed with early-stage breast cancer in 2021, and Atiba, who was diagnosed with metastatic breast cancer in 2019.
Welcome, Dr. Taiwo.
Evelyn Taiwo, MD:
Hi, everyone. Thanks for having me. It's really an honor to be here with everyone who's on. I love doing this type of talk. Organizations like LBBC are so important. The work you do as it pertains to patient outreach, education, empowerment, and advocacy is so important.
I'm going to spend the next few minutes talking about a general overview of breast cancer. I'm going to go over the epidemiology, staging, classification of breast cancer, and the treatment and supportive care that's necessary. I always start off with talking about the epidemiology of breast cancer. I think most people on here know that it's the second most common cause of cancer deaths in women, after lung cancer.
The good news is that the death rate has decreased by about 2.4 percent since the 1990s. This is for white women, and about 1 percent per year in Black women. So, we do see that the risk of death has reduced for all women, but Black women still lag behind white women. We think the reason we're seeing improvement in survival really has to do with screening and early detection, as well as improvement in the treatment and the different options that we have.
This slide here shows the incidence of breast cancer being higher in white women, in the pink, compared to Black women, in the black. However, the mortality rate is higher in in Black women. What's interesting, though, is we're starting to see the incidence rate in Black women starting to go up. This may be due to an increase in in screening. So, it may not be all bad. There's still a whole lot of information that we need to get a sense of why we're seeing the incidence rate rising in Black women.
This is another slide showing that breast cancer is the most common type of cancer, and I put the slide on there so the women here who have been diagnosed with breast cancer or are living with breast cancer get a sense of how common this is, and that you're not alone. There are many women and some men who are dealing with this disease.
The next graph shows the percentage of new cases of breast cancer by age group, and that this is still a disease that primarily affects women over the age of 55, from the age of 55 to about 74. But we do know that we see breast cancer present at a younger age, particularly in Black women. The median age of diagnosis is about age 62 in the general population, but we do see an earlier age of diagnosis in the Black population.
The reason is multifactorial, but we know this has to do with the higher incidence of triple-negative breast cancer in Black women. I think it's important to understand that breast cancer is not one disease. There are different subsets. When we look at all breast cancers, the majority of breast cancer, up to 75 percent, will be hormone receptor-positive. When you hear people talk about having estrogen receptor-positive breast cancer, that's what that is. Another 15 to 20 percent are what we call HER2-positive. They have something called a HER2 receptor on their breast cancer. Then another 15 percent are the patients that have a triple-negative breast cancer. So, it's important to understand that not all breast cancer is the same. People and patients do wonder, sometimes, why their management is different from another person with the breast cancer. A lot goes into how patients are managed, particularly the breast cancer subtype.
This is a cartoon that shows the breast cancer classification that I talked about on the previous slide. When we look at breast cancer and we get tissue from a tumor in a patient's breast, we're looking for three receptors. We're looking for the estrogen receptor, we're looking for the progesterone receptor, and we're looking for something called HER2. For patients who are considered hormone receptor-positive, these are patients that have the estrogen receptor and the progesterone receptor on the surface of the breast cancer cells. And for patients that are HER2-positive, they have the receptor either on the outside of the cell, or sometimes inside the cell. Patients who are triple-negative are patients who do not have the estrogen, the progesterone, or the HER2 receptor on their breast cancer cells, and that's why it's called triple-negative – because those three receptors are not present on the tumor.
Moving on to breast cancer staging. We stage breast cancer from a stage 0 to a stage IV. A stage 0 breast cancer, those breast cancers that we call pre-invasive, those are the cancers that are DCIS or ductal carcinoma in situ. They're breast cancers that have not left the ducts. They're still within the duct. So, that would be stage 0. A stage I breast cancer is just a small tumor localized to the breast. A stage II tumor may be a slightly bigger breast cancer localized to the breast. Sometimes there are small number of lymph nodes that are involved. A stage III breast cancer has a tumor in the breast as well as more lymph nodes when compared to a stage II breast cancer. And a stage IV breast cancer is a breast cancer that is not only in the breast or lymph nodes, but has now left the regional area and then maybe tumors deposited in the lungs, the liver, the bones, and some other areas that breast cancer cells like to settle in.
Moving on to genetic testing and the importance of genetic testing. There are times when patients wonder and question why they've gotten a breast cancer when there is no genetic abnormality. I think it's important to understand that most breast cancers are not associated with an abnormal breast cancer-causing gene. When you look at this pie chart, you can see that no breast cancer gene mutation is the majority of patients. Then we see breast cancer associated genes in another 5 to 10 percent of patients. And even within the patients who have a breast cancer-causing gene, I think BRCA1, BRCA2 are the genes that people are the most aware of. But there are other breast cancer-associated genes. So, I think it's important to know that besides BRCA1 and 2, there are other genes that also do exist.
For a patient who's got a BRCA mutation, there's an up to 50 percent chance of breast cancer by the age of 50 and up to 87 percent chance of breast cancer diagnosis by the age of 70, and another risk of second breast cancer in someone who's already been diagnosed by the age of 70. So the BRCA mutation really does confer an increased reach of breast cancer. The mutation is often found in patients with triple-negative breast cancer, which I mentioned earlier. We see a higher incidence in Black women. That being said, most triple-negative breast cancers do not have a mutation in the BRCA1 gene, and most are sporadic. However, 10 to 15 percent, and up to 30 percent, of African American women with triple-negative breast cancer harbor a breast cancer-causing gene, particularly BRCA1.
So, 30 percent of African American women, compared to 10 to 15 percent of white women, have this gene mutation. It's important to get genetically tested to get a sense of the risk of a secondary breast cancer as well as other cancers that are associated with BRCA1. This slide shows the extensive number of genes that are also associated with breast cancer. You see that BRCA1 is about 28 percent of the breast cancer causing-gene mutations, BRCA2, another 12 percent. There's a gene called PALB2, and at 19 percent of patients there's ATM, there's CHEK2. I'm not going to go through all of them, but I think it's important. Knowing that there's a BRCA1 or 2 is important, but also knowing if there's the presence of other types of genes is also important. BRCA1 and 2 are not the only genes that can increase the risk of breast cancer.
We do know that the rates of genetic testing in African American women is less than their counterparts. Part of the reason is lower patient awareness, also lower provider referrals, and lower access to genetic tests and services. The lower rates of genetic testing are leading to a lower probability of early detection. For patients who have a breast cancer-causing gene, the screening recommendations and the screening guidelines are different. Knowing if one has that gene could help start screening earlier. The inability to know what a patient's status is may also lower their clinical trial eligibility. Sometimes trials require knowing a patient's BRCA status, and we now have treatment modalities that are available particularly with drugs called PARP inhibitors that we use in patients that are BRCA-positive, and the inability to know what a patient’s status is makes it difficult to offer these treatments that are available.
I say all of this to encourage patients to get genetic testing. Obviously, there are guidelines as to who should get tested, but the conversation with an oncologist, a medical provider, is important, particularly in African American women where there's still a lot unknown about the disease and what contributes to the higher risk of more aggressive tumor biology and lower survival rates.
Moving on to the important part of this talk for patients who've been diagnosed or living with breast cancer. Throughout this breast cancer journey, a lot of it starts off with a patient either presenting with the tumor in their breast, or an abnormality detected on a screening mammogram. It starts off with the biopsy with the radiology department and pathology. And then once the diagnosis is being made, generally a patient is referred to a breast surgeon in combination with the plastic surgeon, if that's necessary for that patient.
The medical oncologists, the radiation doctors, pharmacists, nurses, dieticians, these are all the different treatment modalities and different services that are involved in the management of a new breast cancer diagnosis. Sometimes a medical oncologist would be the first person a patient sees, but this slide shows all the important groups that are necessary to the treatment and management of a patient with breast cancer. In terms of breast cancer treatments, there is the surgical aspect, there is the chemotherapy, which I think most people are aware of. Not everyone requires chemotherapy. We do have hormonal therapy for appropriate patients. We have targeted therapies, which are the monoclonal antibodies, and we have immunotherapy for appropriate patients, and then radiation.
But treatment really varies widely depending on the characteristics of the cancer, the patient's preferences, and the patient's comorbidities. So, not all cancer treatment is the same. In terms of treatment it really depends on the type, like I mentioned, but also the stage of breast cancer. For patients who have stages I to III breast cancer, the treatment is usually a combination of surgery and chemotherapy, and oftentimes radiation will be part of the treatment. For patients who have small size tumors, less than 2 centimeters, surgery's often the first treatment modality. For patients who have greater than 2-centimeter tumors or positive lymph nodes, there's often a discussion with the surgical and medical oncology team as to whether some sort of medication or chemotherapy or immunotherapy is required before surgery. There's often a conversation with those two teams to determine the order of the treatment plan.
For patients who have stage IV breast cancer, the treatment is primarily with medications. Sometimes that's anti-hormone treatment. Sometimes that's chemotherapy. Immunotherapy antibodies for patients who have painful lesions; radiation may be offered for patients who are coming in with brain lesions. Radiation may be part of their treatment, but really the treatment is palliative, which means it's to control disease, to manage symptoms. Rarely is surgery considered except if there's a brain lesion. And the reason why is in a patient who's metastatic, where disease is outside of the breast, the surgery is not contributing to improved survival since the tumor is now out of the area that it started. Usually, radiation is suggested if someone's coming in with say, a breast lesion that's very painful, that's bleeding, that's getting infected on a regular basis.
In terms of when to give chemotherapy before surgery, this is called neoadjuvant chemotherapy or pre-surgical chemotherapy. We're doing this more and more because we're getting a lot of information from patients getting some form of treatment before surgery. Traditionally, we were giving neoadjuvant chemotherapy to patients with breast cancer to improve cosmetic outcomes following surgery. We would also give it to patients who we were pretty confident would get a good response to the treatment. It allowed us to assess the tumor response. And then giving chemotherapy before surgery was also offered for patients who had contraindications to undergoing surgery at the time of diagnosis. So, patients who were pregnant, but now we're using chemotherapy as a way to deescalate or sometimes escalate further treatment. If we're able to assess a tumor's response to chemotherapy, then it allows us to assess whether additional treatment is necessary, or to reduce the treatment we're giving to this patient.
It's really helpful in getting additional information and we're moving, more and more, towards giving chemotherapy first. This is for patients where it's been determined that chemotherapy is likely going to be beneficial. This is not for all patients. That is sometimes a cause of anxiety for patients who wonder why surgery is not being done right away at the time of diagnosis. We have studies showing that whether chemotherapy's given before or after surgery, the survival is essentially the same. That's what this graph shows.
Moving on to surgery and the type of surgeries that are done, we don't do radical mastectomies anymore. Those were pretty invasive, very disfiguring surgeries that were done up to the 1980s. For patients who require a mastectomy, a modified radical mastectomy is done, which is not as disfiguring as a radical mastectomy. The goal is generally to conserve the breasts, where we do a lumpectomy with radiation. And that's always the goal, but there are times where that is not possible, whether it's due to the tumor, the patient's breast size, the multifocality of the disease, or patient preference.
We also do consider genomic testing when we're trying to determine whether chemotherapy is going to be beneficial or not. Like I mentioned earlier, not every patient requires chemotherapy. We now have additional tests in certain tumor types, particularly in the hormone receptor-positive breast cancers. We do tests such as Oncotype or MammaPrint to help us determine whether chemotherapy is beneficial in this patient or if we can get away with just endocrine therapy only, which is the anti-hormone treatment.
Moving on to what chemotherapy is, chemotherapy is systemic treatment. It's therapy that travels in the bloodstream throughout the entire body. So, I think when we talk about chemotherapy, there's this narrative that it's going to be treatment that causes significant toxicity. That does exist. But chemotherapy is really any treatment that you're getting through the bloodstream. So the monoclonal antibodies, the immunotherapy drugs that are not really chemotherapy, have all been put under that same umbrella.
It's important to understand the nuances of what it means when someone says they're getting chemotherapy. Usually for a patient who's going to get chemotherapy for their breast cancer, it's given intravenously, sometimes through a regular IV, like the picture on the, on the right. Sometimes chemotherapy will require something called a mediport, which is just a venous catheter that's put in the chest wall and it's a way to get easy access to the vein. The chemotherapy would be given through that port and that gets the medication through the system. There's certain chemotherapy regimens that we prefer to do a mediport. And for patients who are going to be on a prolonged treatment course, a mediport is also useful so we're not sticking the patient for blood draws or even for chemotherapy. There are treatment side effects associated with chemotherapy. Hair loss is common, sometimes nausea, sometimes diarrhea, other times it's constipation. Sometimes it's neuropathy, which is irritation of the nerves that certain chemotherapy drugs cause. But many of these treatment side effects are manageable, whether it's the anti-nausea medicine, anti-diarrhea medicine, these are all available and should be given to patients prior to starting treatment. It's all available at home and you can use that if you do experience side effects. We do a lot better job than decades prior in some of the supportive treatment for patients who are on chemotherapy.
As it pertains to patients who are getting hormone therapy, even though it's not chemotherapy, they do have their own side effects, too. Sometimes hormone therapy, traditionally and typically it's used post-surgery, but we're sometimes using it pre-surgery the same way we give chemotherapy to certain patients pre-surgery. We're also using hormone therapy in certain patients pre-surgery, as well, to shrink the tumor. But they do have their own side effects, such as hot flashes, night sweats, vaginal dryness, some variation in periods. And all of these are side effects that are also manageable. For hot flashes that are terrible, sometimes low-dose antidepressants are used. I mentioned the anti-nausea medicine, anti-diarrhea, anti-constipation medicines. There's something called a “magic mouthwash” we use for our patients who develop sores in their mouth. These mouthwash and rinses are very helpful when there's mouth sores and tenderness in the mouth from the chemotherapy. For patients who struggle with blood counts dropping and becoming very low, white blood cells, we give injections like Neulasta, Neupogen, or Onpro. Sometimes we give it as prevention because there are certain treatments that we know will definitely cause a patient's blood count to drop.
We don't want it to drop too long. When I say blood count, I'm talking about the white blood cells that fight infection. If they're low for too long, there's an increased risk of infection. So, as a way to prevent that, and speed up the recovery of the white blood cells, we give these medications or injections like Neulasta. I mentioned the low-dose antidepressants that are used for hot flashes. And then for bone health we recommend calcium, vitamin D, because anti-estrogen medicines can speed up the rate of bone loss because estrogen generally is good for the bones.
Moving on to radiation. Many patients who are getting lumpectomies will also require radiation. There's very good data that shows that lumpectomy with radiation is just as good as getting a mastectomy and says it's not necessary for women to lose their whole breast if they don't need to. For patients getting lumpectomy, radiation is generally offered. It's targeted treatment to the breast and the regional lymph nodes. There are different types of radiation. There's external beam, which is the most common and traditional form of radiation in breast cancer, but sometimes brachytherapy is offered, which is where they put in catheters and radiation is delivered through those catheters.
Talking a little bit about clinical trials, I think this is important when it pertains to Black women. We know that there is a lot of distrust, for very good reason. There have been unethical practices for decades, which have made people in the African American community somewhat cautious about being on clinical trials. When it comes to cancer care, clinical trials really are the mainstay of development and validation of new cancer therapies.
It's hard to assume that a medication that works in one particular group would work in the other, but without having patients from these underrepresented groups, it's hard to know whether our treatment modalities are actually beneficial. We do know that the disparities in clinical trials is really stark for racial and ethnic minorities. We actually have data showing that the enrollment in clinical trials has decreased over the past 14 years. While we see that in cancer care in general, clinical trial participants are disproportionately non-Hispanic men who tend to be more educated and have higher incomes. So, underrepresented minorities and patients who have lower incomes are not being represented in many of the trials that are being done. Clinical trials are important because they are representative and provide more accurate information on effective treatments, which should then lead to improved survival for all patients.
This graph shows what I just said. When you look at the United States population, Caucasian is 72 percent of our population, Hispanic, 16 percent. African American, 12 percent. But when you look at clinical trial participants, it's 94 percent Caucasian, African American, about 5 percent, and it's even lower for Hispanic patients. Not everyone needs to be on a clinical trial. Most patients who've been diagnosed with breast cancer are not going to be on a clinical trial. But it's important to ask if those clinical trials are available, or if there's one that you or your loved one may benefit from.
And then moving on to the survivorship phase, which is the phase post-treatment. There is life after a breast cancer diagnosis for patients who have early-stage breast cancer, and even patients who are metastatic. But when we talk about survivorship, it's primarily in patients who have early-stage and they're done with their treatment. There is ongoing screening with mammograms, but then we start focusing on other medical issues, other comorbidities for patients who have hypertension, diabetes, obesity. That is something that we know increases the risk of breast cancer recurrence and breast cancer in general. So, modifiable risk factors are things we start focusing on in the survivorship phase, counseling lifestyle changes. Bone health is an important one for patients, particularly on anti-hormone treatment. The patients who have cognitive impairment, people call it chemobrain, emotional, and mental wellness. After a diagnosis of breast cancer is very traumatic for many patients. And the end of the treatment is when a lot of people start processing what's happened. So, really focusing on mental health in the survivorship phase is important, as well as cancer screening: the colon cancer, cervical cancer, all of that.
And then for patients who are metastatic, the treatment goal is really to improve survival, minimize tumor burden and symptoms related to the disease, and prevent complications related to the disease to help patients live longer and of course to improve the overall quality of life. There are tons of treatments available for metastatic breast cancer patients. I often think we don't talk about it enough. A stage IV diagnosis definitely doesn't mean life ends. It means life changes. So, it's important to know that. It's important to advocate for yourself. It's important to ask questions and it's important to find providers who understand or also believe that, too. This is my final slide and my take home is that there's treatment for all breast cancer stages.
One size does not fit all, the treatment side effects are manageable and very treatable. Important to discuss genetic testing and enrollment in clinical trials with providers. And please advocate for yourself and do not be afraid to ask questions. I tell patients if there is a medical doctor, a provider who is frustrated by you asking questions, it may be time to find a new doctor. Patients who ask questions are advocating for themselves, and by doing that, it allows us as providers to do a better job. I'm a big supporter of advocating and asking questions. And that is the end of my talk. Thank you. Awesome.
Thank you so much, Dr. Taiwo. You know, this was an awesome presentation, a lot of great nuggets that you shared today. And for those who are tuned in with us and on the chat, be sure to put your questions in the queue in a section featured at the bottom of your screen, and we'll get to as many questions as we can throughout the program.
Now I would like to welcome our panelists to the screen, Atiba and Novella. Welcome, Novella. Welcome, Atiba. Thank you so much for joining us.
Dr. Taiwo presented a lot of great information for us and gave us a good overview of what's important first to really understand about our diagnosis and treatment. Atiba and Novella, I want to ask you a few questions. Did your providers discuss your diagnosis and treatment options? Atiba, understanding that you were diagnosed with de novo metastatic breast cancer, meaning right from the beginning you were stage IV, I want to start with you in answering that question. Did your providers discuss your diagnosis and treatment options with you?
The short answer is yes. However, the long, realistic answer is even though they discussed it, I wasn't in the right mindset to really understand it. I didn't know anyone that was ever affected with breast cancer. I wasn't aware that the doctors would need time to have a treatment plan. So, for 10 days, I laid in bed and cried because it was just silent. I didn't understand at the time the silence was because they were gathering to work on my behalf, to create a treatment plan for me since I was de novo.
And Novella, what about you?
When I went in and received my diagnosis, I was told, “you have breast cancer, and this is the type of breast cancer that you have in your right breast.” After that I pretty much was like, “okay, so what do I do now?” I've never had breast cancer, and no one in my family has ever had breast cancer. So, she told me, “Well, we'll just have to wait and figure out what the treatment plan is. It could be chemo, or it could be radiation, or it could be both. We are just not sure yet.”
I was given a handful of paperwork that had a lot of different medical terms and terminology in it and they were like, “Okay, here, go read this paperwork and let us know if you have any more questions.” And I was completely confused. I was horrified, of course, because that is not what you want to hear: I've been diagnosed with breast cancer. I walked away confused, just like a Atiba, boo-hoo crying because I'm thinking I'm about to die, because no one has explained to me what's going to happen next. You know, what is my chance of survival. So, I was kind of in that same state.
Yeah, and you know, when we go through these things, we have so many questions. But like you said, when you hear it's cancer, you just go blank.
So, Novella, I want to ask you this. We were talking about clinical trials. This is one of the things that we're really having a lot of conversation about. Did your doctors talk to you about clinical trials or did they talk about genetic testing with you?
Clinical trials? Not at all. That was never brought up in our conversations. They never really talked to me about genetic testing. I happened to get an email from the hospital saying, “Hey, we want to set you up with this particular person to do genetic testing.” But no one had told me about it. I went anyway and I listened to everything that he had to say and I said, “Yes, sign me up for genetic testing. I want to know if I have a marker and then I want to know if I have any other markers for besides breast cancer.” So, I definitely signed up for it and found that I had no genetic markers, no markers for breast cancer or any other cancers.
Atiba, what about you? What was your experience with genetic testing, as well as having conversations around clinical trials?
Until I was diagnosed with breast cancer, I didn't even know genetic testing existed. It was extremely important for me to go through with it, being diagnosed de novo. I wanted to give anyone coming behind me the opportunity to learn and be educated sooner than later. When it came to clinical trials, they did talk to me about it, but it wasn't with hope because what a lot of people don't realize is even though we do raise our hand for clinical trials, pre-existing health conditions often keep us from becoming part of the trial. Being someone that is obese, and there's things that come with that, it's often that I may not have been selected. So, they did talk about it, but it wasn't as positive as it could have been for someone who's either early-stage or of a normal weight.
You know, I remember when I was diagnosed with breast cancer and I had genetic testing, and the results came back and said I didn't have any kind of genetic mutation, they asked me if I wanted genetic counseling, and I really didn't understand it. It was like, well I'm negative, so what does that mean and why do I need counseling? And no one really explained that to me. And so, Dr. Taiwo, I would like to ask you about that. When we get these phone calls, whether we have a genetic mutation or not, should we undergo the counseling that is offered?
Evelyn Taiwo, MD:
Yes, absolutely. I think genetic testing without counseling could be a cause of distress in patients who have a gene mutation. I think it's important to know what it means to get a positive test or even a negative test. And now, because we're testing more patients, we're also finding things called “variants of unknown significance,” which are the VUS-es. It's also important for patients to know what that means.
What a genetic counselor does, is they are a bit more intense in getting a family history. They create a family tree and then if a patient has a genetic abnormality that increases the risk of breast cancer or other cancers, they're able to figure out who else may benefit from genetic testing in your family. The whole point of testing starts off with testing a patient who's been diagnosed with a cancer, and then who else may have inherited that gene mutation.
So that person can get tested, whether it's your sibling, whether it's your offspring, they can get tested and then they can start getting screened earlier. For patients who have a BRCA mutation who are young, we screen them starting at the age of 25, not age 40, in terms of mammograms. We do not just do mammogram, ultrasounds. We also will consider MRIs in these young women. That's why the counseling part is important: to get that whole family history and who else may benefit from testing and not have to pay out of pocket for it. If you're positive, and your child who's 22 – we don't test in minors – and your child who's 22 wants to get tested, insurance is required to cover it because there's a parent who is positive.
I know we talked about genetic testing, but I want to jump back to clinical trials. How do we find out about clinical trials if our doctors aren't having these conversations with us? What do we do and where do we go? Dr. Taiwo, I'll pitch that question over to you.
Evelyn Taiwo, MD:
There's a website called clinicaltrials.org where patients can go, though it could be a bit overwhelming for a lay person to understand. I think the most important thing is talking to a provider. Having that conversation with your doctor, and then asking is there a place where I could inquire about a clinical trial? Sometimes just a televisit to ask about it is all that's needed. Sometimes it's a run-of-the-mill breast cancer where a clinical trial's not essential. We know how to manage it, we know how to deal with it. There's a pretty well-established standard of care, but asking I think is important to normalize and demystify what it means to be on a clinical trial.
Thank you. I want to switch gears for a minute. We’ve talked about clinical trials, we've talked about genetic testing, we've talked about having a discussion around our treatment options. Let's talk about being a Black woman with a lived experience of breast cancer. When it comes to being Black, Atiba and Novella, was there ever a time during your treatment when you realized that your diagnosis was actually different because you were Black? Atiba, I'll start with you.
That's a great question, being that I didn't know anyone who ever had breast cancer and it wasn't an area that I studied. We're all taught “check yourself” and all of that jazz, but no one really gets down, “Hey did you know there are different types of breast cancer?” So, being someone that was diagnosed with inflammatory breast cancer, it was pretty scary. And I say that to say because it's an even smaller group of women who are diagnosed with the type of cancer that I was diagnosed with. So, it was tough to really look. I had to talk to my social worker to try to find a Black woman's group and I couldn't find one in New Jersey, and thankfully I met Tiah in Atlanta. It just shows you sometimes, even with the different types, it's also limited resources for us, too, just to be able to say, “Hey sis, is there anything that you can tell me?” Or, “is this is what I'm being heard? Is that right?” It's just a lot sometimes.
And to hear you say that, when I was going through back in 2015, I was looking for those supportive services and I didn't see anyone that looked like me, both being young and being a Black woman. And I started the sisterhood that you became a part of. But also with that, you're starting to see more and more Black women start their own nonprofit organizations, starting their own support groups. Like a lot of the partners that we have here today. It's because this was a gap, it's missing, and I'm so thankful that we have uh, anchor partners like Touch, and Tiger Lily, and For the Breast of Us, and of course My Style Matters, as well as the Chrysalis Initiative, that's helping to address these issues and bringing us together. We thank LBBC for helping us to further our voice like we're doing tonight.
I want to ask you Novella – we asked Atiba if she ever thought about her diagnosis and being different, being Black – but did you ever have a conversation with your doctor about being a Black woman and having been diagnosed with breast cancer?
I didn't know to ask. I had no idea what I was supposed to ask my doctor. I was in a state of shock that I even got breast cancer. My breast surgeon is Caucasian, so I felt as if she was probably treating me the same way as any other woman that was diagnosed with breast cancer. I later found out that most Black women have dense breasts, and they were saying, “Oh, you have dense breasts, you should have your mammograms, you should have your ultrasounds, so that we can see additional tumors if they're there.” I learned so much after having breast cancer and having connected to other Black women who had breast cancer, things that I needed to look out for, how different side effects may impact me because I was a Black woman. I didn't find out any of this information until after the fact, and I wish I knew ahead of time so that I could have been better prepared.
Absolutely. Dr. Taiwo, you've participated in studies on cancer presentation in minority populations, but can you tell us what have you learned when it comes to Black women and breast cancer? I know you've talked about some of those things in the presentation, but I want to hone in on it just a little bit more. What are some of the things that you're finding we really need to have more conversation about and be able to address like we're doing tonight?
Evelyn Taiwo, MD:
I think a lot of what we see is that women do present at a later stage. We've talked about the fact that triple-negative has a higher incidence rate in Black women. My hope and goal for a lot of what I do, and what you do, is to encourage screening. There was a study published last year, 2 years prior, where they actually showed Black women who are diagnosed with triple-negative breast cancer from a screening mammogram actually appear to do better than white women, right? Compared to women who are diagnosed by a mass that they palpated and presented with. So, I think presenting early is important, which means screening is important. Yes, dense breasts could increase the risk of breast cancer. We're not sure if it's that the breast density increases the risk, or the breast density makes it difficult for a radiologist to actually see the breast on a mammogram.
In New York state, I'm not sure about other states, when a patient has dense breasts, it's actually required by law to state that in the mammogram report. Then that forces the person who ordered that mammogram to decide if they want to do – ultrasound in addition to the mammogram. Those are the things that we're seeing: that we're presenting later, so screening is important. We have more dense breasts, so ultrasound with the mammogram may be part of what is required. And then we have more sophisticated mammograms now. Everyone really should be getting the 3D mammograms. Those are the mammograms with the tomo [tomosynthesis]. So, if you're going to a facility that still has the old school mammogram, that's not going to cut it.
I'm going to pivot because we have a lot of questions coming through in the chat. I want to ask you this question. When we think about Black women, since we're having this conversation about Black women and breast cancer, when it comes to our treatment options, depending on the insurance that we have, does that really impact the type of treatment that we're going to get? Dr. Taiwo, I think you're a very great expert to answer this question. How does your insurance impact your care?
Evelyn Taiwo, MD:
It shouldn't, and it doesn't. Prior to being at Cornell and NYP, I worked in a city hospital, and those patients who came through our breast center got the standard of care. It's getting the chemotherapy approved, which, as long as the provider is giving the treatment for justifiable reasons based on evidence, then your insurance should not prevent you. Even with the newer, more expensive drugs, the monoclonal antibodies and the immunotherapy, that should not prevent a patient from getting standard of care. I think what's important is having a physician who understands what the standard of care is, who's up to date with oncology and particularly breast care. It's a good problem that we're having where there's a lot of information that's coming out. There's a lot of research that's causing us to pivot and make changes in how we manage patients.
So, finding a provider who's up to date is what's the most important. Your insurance type should not prevent you from getting the care you need. Sometimes, we as doctors have to do what we call peer-to-peer because then you have to fight with insurance companies to cover what you know is needed and usually they will approve it. Rarely, you may get a denial for certain imaging modalities, whether it's a PET CT scan versus a CT scan, but that's not going to change management. And when you look at the big picture, as it pertains to the drugs, we rarely get denials. You just have to show why it's necessary.
Yeah, and you know, there's a study that came out that said that Black women, African American women and Latino women are 30 to 40 percent more likely not to get the standard of care. We ask these questions about what do we do when we're in those situations? And we're not too certain if we are getting standard of care, and some of us don't even know what standard of care is, which is why we're having this conversation tonight. So, knowing the statistic that Black women, at an alarming rate, are not getting standard of care, what can we do? What do we do about that? How do we address that?
Evelyn Taiwo, MD:
That's a great question. And it's not a patient's responsibility to know what standard of care is. They are the patients, not the physician. What I started telling family members and friends to do, when you see a new doctor, for all medical issues, I think acknowledging and telling your doctor, “I'm here, I'm scared.” I have a breast cancer diagnosis. I'm a Black woman and I know what the statistics are. I need you to tell me and reassure me that I'm going to get the best possible care, that I'm going to get the care you would give to everyone. I think you say that to a doctor and they calm down and it's like, okay, this is a patient who's coming in to advocate for themselves. Any patient who comes in advocating, asking questions, keeps me on my toes in a very good way. I can't miss things. I need to be on it. I really do recommend that to everyone. Just tell your doctor, “I know what the statistics are. I do not want to be a statistic, and I need you to help me make sure I'm not a statistic.”
Oftentimes, we do ask those questions, and sometimes we ask a lot of questions. I want to ask Atiba and Novella: sometimes Black women get labeled, we get labeled as an angry Black woman. How do you advocate for yourself without being labeled as an angry Black woman? Atiba, I want to start with you.
So, it's exactly what Dr. Taiwo said. That's one of the tools that I put in my toolkit. When I meet anyone, I start the conversation: “Look, I know our communities have had some differences, there's history of that. However, in this moment when we interact, I need you to treat me like you would treat your mother.” And that really just level-sets the conversation. I did that with my brain surgeon and the next thing he said is, “You know what? Thank you, and can I have a hug?” And that calmed us both down. It allowed me to let my wall down so I could sit in front of him and really hear what we're going to do together.
That's really good that you had that experience. But we know that 3 percent of oncologists are Black, and sometimes we go out – and Dr. Taiwo kind of listed all of the different people that we need on our team – and sometimes we want to find someone that looks like us. But unfortunately, like I said, only 3 percent of oncologists are Black.
Novella, how did you navigate that process? Were you looking for Black doctors to be on your care team?
I was still in that state of shock. I just wanted some people to take care of me and heal me, for lack of better words, of the breast cancer that I had. So how I approached it, is I just pretty much told them, “I'm going to ask a lot of questions. Please forgive me upfront, but this is new to me. And in order for me to relax, I have to ask questions in order to get a better understanding of what's happening to me.” Also, with the medications, if I'm being given any type of medication, I feel more comfortable if I know what the medication is and what the side effects are, so that I can be aware if anything does happen. I approach every communication with every medical provider that way. I apologize up front, I'm going to ask you a lot of questions, so please be patient with me.
This is my first time having breast cancer. That tended to calm the area or the room down a little bit. They were very patient with me in that regard. I was very blessed that I did have an African American, female radiation oncologist, and I was shocked to see her. All of the people that were on my care team were Caucasian. So, when I walked in – and this is the crazy part, her last name was Brown, just like mine – I went in and I saw her and I felt at ease, because I felt that she was going to understand what's going to happen to my body, and she'll be able to tell me what's going to happen to my body. And she was. And the same thing with my occupational therapist. She was an African American female, but she was also a breast cancer survivor herself. And that just put me at ease from the get-go.
Yeah. And before, we had a conversation about your experience and your journey, and what you shared with me is that you were very directive with your breast surgeon and you really wanted your breast tissue removed during your mastectomy. And you said that your surgeon tried to convince you to retain some of that tissue, but you were very, very clear that you wanted it all removed.
And your surgeon actually left some tissue in your body. And then you also shared a very difficult experience with me where you repeatedly were trying to communicate to your nurses, while they were administering medication to you, that something just wasn't right. But they didn't listen to you. Can you tell us how you actually got them to listen to you?
Yeah, so, I got a bilateral mastectomy and I did not want reconstruction. I was very clear with her from day one, take both of the breasts. I do not want reconstruction, remove all breast tissue. I thought we were clear. We had surgery. I woke up, she came to my bedside and she said, I know you told me you didn't want reconstruction, but I left breast tissue there for you, and skin, so that you can get reconstruction in a year, or two, or five years down the road, because I know you're going to change your mind. And I was devastated. I was already devastated just by having the surgery, knowing that I was going to have chemo and radiation therapy. But because she left breast tissue and skin was devastating by itself, because I have to look at that every day knowing that she overstepped my boundaries and my will while I was unconscious. So, that was another one. It is kind of like hindsight, there was nothing I could do while I was sedated. I have this breast tissue and skin left over.
During my chemotherapy sessions, when I knew the drug that they had given me was giving me some sort of reaction that was not good, I screamed out in the chair, connected through my port, “I'm sick, something is wrong, I feel sick.” And they heard me, but they did nothing. And I did that for 30 minutes and they still did nothing. But I heard everything. So, I wrote everything down, I talked to my oncologist, and they listened to me. He removed the medication off of my chart and rearranged my medications for chemotherapy. And I never had that issue again. At that point, write everything down, talk to your provider, share it with them. They will listen, but you have to keep speaking to them for them to understand. I'm serious.
Dr. Taiwo, just listen to Nova's story. I want to ask you this question. You know, Novella spoke out. But sometimes we find ourselves in situations where we're too afraid to speak out. We may live in communities where we don't have access to other providers, or we may have an insurance carrier or health insurance that may not allow us to go fire our doctors. In those instances, what do we do? What do we do when we feel as though our hands are tied and we feel hopeless? What can we do to make sure that we're getting the care that we need and we deserve?
Evelyn Taiwo, MD:
Like I said on my previous slide, you know you have not only the surgeon, you have the medical oncologist, you have the radiation doctors, you've got your dieticians, you've got your nurse navigators, the access nurses. There are a whole teams that are dedicated to taking care of patients. I've actually had patients who found out they had some concern, maybe not necessarily related to their treatment, but they wanted to ask a question that they thought was inappropriate. They would ask my nurse practitioner, or they would talk to the patient navigator about it, and then that's how it got back to me. And then we were able to have a conversation about it.
I think within that group you find people that you trust, because there'll be a nurse, there'll be a physical therapist, there will be someone that you should feel like, or that's present to listen to you, and then can get that back to your provider. So, that's what I generally recommend. Find someone who gets you. It could be the front desk person, right? We're all part of the team, and we're all constantly communicating. And sometimes, just take someone with you. Sometimes when a patient shows up with their child, or their mother, or their partner, it's different. It's like, oh, game on. I gotta talk to two people now, so the pressure’s on in a good way. In a good way.
So, Novella talked about having a reaction and we're getting a lot of questions in the chat about side effects. What are some of the things that we can do when it comes to side effects like neuropathy or hair loss? Is that hair loss a permanent situation? And then what do we do? How do we manage and navigate those side effects?
Evelyn Taiwo, MD:
Right. So, hair loss is not permanent. Most patients will recover hair after they're done with chemotherapy. For certain patients who are really determined to not have a lot of hair loss during their treatment, there is the scalp cooling device that's available. We don't have a whole lot of data in Black women. I've used it in a few Black women and have had success with some, and not so much with others. It's also not covered by insurance right now, it's out-of-pocket, $275 a pop each time, each cycle. So that's not always the easy route for most patients. But most people will have recovery after chemotherapy-associated alopecia. You may have some people who don't fully recover on their hair. Maybe they had some alopecia issues even prior to starting chemotherapy that was being masked, and then the chemotherapy just sort of brings that all to light. Most patients will recover.
As it pertains to neuropathy, the key to neuropathy is actually trying to stop the chemotherapy before it develops to a degree that's significant. We rate neuropathy from a grade 1 to 4. For patients that are on a drug called paclitaxel, or Taxol or Taxotere, those are the drugs that really can cause the neuropathy. I'm very aggressive, and many doctors are very aggressive, about asking, “do you have any numbness and tingling?” If it's a grade 1 or grade 2, we don't do too much about it because it's tolerable. Anything higher than that may warrant dose reduction. Anything higher than that may warrant stopping the treatment altogether and switching to an alternative therapy. There is some data that patients who wear the frozen gloves, kind of the same thing happening in the scalp cooling, that may also reduce neuropathy. I don't generally recommend that a lot because a lot of my patients are also diabetics. If you're diabetic, you already don't get good flow to your digits, to your fingers. The frozen gloves may actually make that worse. But in patients who don't have diabetes, don't have any nerve problems, that's also another way to prevent neuropathy.
What about some of the uncommon side effects that we may not hear people talk about, like nasal sores or an allergic reaction to the chemo? We know that we don't have a large participation of Black women in clinical trials. So, sometimes, when we have these experiences, kind of similar to Novella, where the nurse said, no one really has a reaction. This is uncommon. We haven't seen it. And so, they chalk it up to being something else. What do we do about that? Are we starting to see more Black women have these types of experiences? Are we coming forward to talk more about it? What are you seeing in your practice?
Evelyn Taiwo, MD:
I think at the end of the day it really has to do with being in a facility where it's not even necessarily about having a doctor of color. We talk about the importance of workplace diversity, having nurses of color, having social workers of color. All those things are important. What you realize is that, when you have different groups of people working together, then it's very easy to see another person's humanity and not just chalk it up to being overly um, histrionic or overreacted. There are very clear, documented cases of allergic reactions to certain types of chemotherapy: paclitaxel, Taxotere. Those are very, very common. I think the important thing is always to err on the side of caution. A patient has a reaction. If I'm not clear that it's an allergic reaction, we stop until proven otherwise. And when you feel like your safety is being compromised, make a scene. We don't want that. But if you have to, to save your life, make a scene.
Yeah, absolutely. Let's talk a little bit about the health administrations. How do healthcare administrations view their role in addressing inequities in breast cancer access and outcomes?
Evelyn Taiwo, MD:
Oh, that's definitely something that's become more prominent. When you think about 2020 and the social justice issues that were happening in the country, I think it was a wake-up call for the whole country, and for healthcare institutions as well. I know, where I work, which is NewYork-Presbyterian, there is an endowment, there is an institute, that's dedicated to healthcare, cancer, sickle cell, all those things that pertain to diseases affecting people that are underrepresented, with the goal of really narrowing disparities. And we're talking more about health equity. I think many institutions are aware of this and they're putting things in place, whether it's hiring doctors of color, having a more diverse workplace, and then being open to doing research that has not traditionally been the most important. I think everyone's realizing if marginalized communities in the country are healthy, then everyone is healthy, right?
I think how this benefits the whole society at large is becoming more and more obvious to the higher-ups. They are instituting policies and restructuring to make sure these things are part of the conversations that we're having. The NIH – we all write to the NIH to get grants for research that we want to open at different centers. There, there's criteria that you need to have a certain percentage of minority patients in your study. If you want to get this grant money as a cancer center, you need to enroll a certain number of minority patients in your clinical trials if you want to get NCI designation. So, these are things that are being put into place to really put pressure on institutions to include everyone in our society and reduce health disparities.
Let's talk a little bit about this, because I'm seeing a lot of questions about post-treatment. Someone is diagnosed with breast cancer, early-stage, they've completed their treatment, they have been used to being monitored for quite some time. And then it's like, “oh, I'll see you in 3 months.” What should that monitoring look like, whether you had a mastectomy, whether you had a lumpectomy? What type of monitoring should they be anticipating with their doctors, and how do they know, especially when some patients undergo MRIs and some don't have MRIs? What should they be expecting and what is considered standard of care?
Evelyn Taiwo, MD:
That's a difficult [question], you know – there's no general life standard of care. The patient's age, the patient's risk factors, the patient's genetic testing, the patient's stage, those are all the things that really guide what the management is in the survivorship phase. For a patient who's had a mastectomy, we're basically going to continue to do mammograms, ultrasound as needed. On the contralateral side, you can't mammogram a breast that doesn't exist. So, we don't do anything on that side besides a physical exam to check the chest wall, to check the underarm. As it pertains to bloodwork, for patients who have gotten chemotherapy, I definitely would do bloodwork every few months – at least every six months –just looking for any abnormalities, any signs of liver abnormality, elevated calcium, basically just looking for signs of recurrence.
Unlike some other cancers, CT scans such as chest, abdomen, pelvis, are not standard of care in someone who's got early-stage breast cancer. There are patients who maybe have some equivocal findings on their CAT scan prior to starting treatment, then a doctor may want to follow that. But if your pre-treatment scans, if scans were done to rule out metastatic disease, where unremarkable, it's not standard to continue to do scans in the survivorship phase. As to whether a patient gets an MRI, once again, that has to do with your age, the breast density, your genetic testing. Patients do ask about tumor markers. Tumor markers are not as reliable in breast cancer compared to, say prostate and colon. Tumor markers are more helpful in the metastatic setting, not necessarily in someone who's got early-stage breast cancer. So, there are no guidelines to do that, even though some doctors do, do that. That may change. We have more and more sophisticated technology looking for circulating tumor DNA. In terms of what standard of care is now, it could change in 2 months because we're constantly learning. So as of right now, we're not doing scans in patients with early-stage breast cancers. We're just doing the standard mammogram or ultrasound to follow up and per routine recommendations.
Thank you. I want to talk about comorbidities, especially in in Black women. Black people, not just Black women. Because we know that men can get breast cancer, too. How do we navigate when we have other health conditions? You mentioned diabetes earlier, or we may have sickle cell or lupus. How do we go about navigating our care with all of this that we have going on with our health?
Evelyn Taiwo, MD:
Generally, during active treatment for breast cancer, those things kind of fall behind. Then once the treatment is complete, that's, once again, going into the survivorship phase, you need to start [getting back on track], whether you’re due for your colonoscopy, whether it's to follow up with your rheumatologist because you have lupus. We focus on trying to get patients who are overweight or obese into programs to help with weight loss, get nutritionist to help teach our patients how to eat. I think it's important when we even talk about weight loss and nutrition, we have the kind of foods that we like. Not everyone wants to eat carrots every day. So, finding a culturally sensitive nutritionist.
I live in Brooklyn and a lot of our patients are from the Caribbean. They have foods that they like. We know food is cultural, it makes us feel great. So, finding healthy ways to cook the things that are important to you, within your culture. I think that's also important if we want patients to be successful.
For patients who are smokers, we strongly advocate smoking cessation because that could increase the risk of breast cancer. For patients who are heavy drinkers, we also talk about reducing your amount of alcohol intake. Those are the things that we talk about in the survivorship phase that are important. And you’ve got to keep seeing your primary care doctor, you’ve got to manage your diabetes, your high blood pressure, all those things that were being done prior to breast cancer. What happens with a lot of doctors, because cancer is scary not just for the patient, but for non-oncologists, they just kind of wash their hands off and hand you over to the oncologist. We need to do better in bringing these doctors back. I will continue to see this patient for many years, every 6 months for many years. Then maybe once a year when we are like year 8, 9, or 10. But I also need you to help manage their blood pressure and all the other things than I, as an oncologist, I'm not equipped to manage. It's a whole village.
Thank you. And one more question before we start to wrap it up. We're seeing more and more women have recurrences, and sadly, we know that Black women are 39 percent more likely to have a recurrence of breast cancer. When we are diagnosed with these recurrences, should we get genetic testing again? Have things evolved or changed over time that we need to continuously get genetic testing even if we don't have a recurrence? Should we get genetic testing within, you know, 5 or 10 years or 8 years? What are your thoughts about that, Dr. Taiwo?
Evelyn Taiwo, MD:
Genetic testing is your innate gene. That doesn't change, right? As we become more sophisticated with the testing, we may find things that were not identified 20 years ago that we now know as pathologic. So, it's not about getting genetic testing every time there's a recurrence. As it pertains to genetic testing, it has the technology change. So, if I have a patient who was diagnosed 20 years ago and had genetic testing, then I will definitely retest them now. But a patient who got diagnosed with breast cancer three, four years ago does not require new genetic testing.
Now, there is testing of the tumor, which is very different from actually testing the patient. We do test the tumor, sometimes at the time of diagnosis, sometimes at the time of recurrence, because we're looking for new mutations in the tumor that we may be able to target. That is not called genetic testing, it's next generation sequencing. That's somatic mutations, looking for mutations in the tumor, which is very different from genetic testing, which is we're trying to find if there's an abnormality that predisposed or caused the cancer.
And I know for all this talk about genetic testing, at the end of the day, it's talking to your provider. A patient who's 75 with DCIS or stage I, hormone receptor-positive breast cancer probably doesn't need genetic testing. But we may get to a place where we are testing everyone because we need more Black genes in the pool. The more genes we have in the pool, the more we're able to identify pathologic findings. We have all this VUSes, which is variants of unknown significance, 15, 20 years from now. And those variants may actually mean something because we now have enough people who've been tested.
I know at my center we have NCCN guidelines for who should be tested. Then there are other guidelines, and the NCCN guidelines are a little bit more conservative. They use age, they use tumor types, but we try to test everyone. If you are wanting testing and your provider is hesitant because you don't fall within the category, it may be a bit of a struggle and you may have to pay out of pocket. And that may be why it's not being recommended. But the conversation absolutely needs to be had. Because most Black women with breast cancer likely qualify for genetic testing.
Well, we have covered a lot of ground tonight, and I want to say thank you so much for sharing all of the great nuggets with us, Dr. Taiwo, and to Atiba and Novella for sharing your lived experience. My last question to all of you is, if you could give advice on what has, or what is, important to ensuring standard of care and understanding your treatment, what would that be? Atiba, I'll start with you.
Your voice matters. You may think all the treatment options are your most important tool. They do add to the special sauce. However, nothing really happens without your voice. You have to scream if you need to, speak up, ask questions, always ask, ask, ask, and take somebody with you. And remember, the insurance company works for you, too.
I agree 100 percent. Speak up. Ask as many questions as you need to ask, even if you're crying through it because the diagnosis is scary. Let your voice be heard and take away, like we said before, the angry Black woman syndrome. This is your life. You could be the one that will save your own life. You have to be an advocate for yourself. And like Atiba said, bring someone with you. If you need someone to hold hands with you – your best friend, your sibling, your mom – bring someone with you that will give you that extra strength. Write it down. I wrote down a lot of questions so that I wouldn't panic and forget those questions. I had the notebook and I gave it to my doctor. These are the questions that I have. And start that conversation.
Thank you. And you know, I would add to this, when you say your voice matters, your voice not only matters for you, but it also matters for the countless number of women that are going to be diagnosed behind you. We're not only saving our lives, we're saving others’ as well.
Dr. Taiwo, I'd like to ask that question to you in closing. What would you like to leave everyone who's tuned in to tonight's program?
Evelyn Taiwo, MD:
I think we're all kind of saying the same thing. Advocate for yourself. I think most doctors who are in oncology, and just doctors in general, are human. They have good days and bad days, but most doctors are in there to do the right thing. Advocate for yourself, ask for second opinions. When my patients ask for second opinions, I support it 100 percent. It's not because they don't trust me, they need to be comforted and they need to have that confidence that what you're telling them is what the next doctor is going to tell them. If a patient doesn't trust me, I can't treat them well. So, advocate, get a second opinion if you want to, and remain vulnerable, because that really allows your doctor to be there for you. It's hard, but bring the walls down. That helps.
Session II: The cost of cancer: Work, financial, and insurance matters
Thank you. It's so nice to be here.
Absolutely. Thank you so much for being with us tonight. I want to jump right in. Would you mind sharing with us, a little bit about your diagnosis?
I was officially diagnosed in the fall of 2019, but prior to that, back in May , I actually did feel what I thought was a cyst underneath my armpit. Since I was a young teenager, I would get a lot of cysts during “that time of the month.” So, it really didn't seem like anything abnormal to me. I really just didn't pay any attention. However, as the months went on, I noticed that it never went away and I was having difficulties doing your everyday, normal things. Putting on my shirt. I'm a chef so, you know, the lifting that I have to do. I noticed that those things were becoming harder for me and I experienced a lot of pain. And my husband was like, “You know, I really think you should get this checked.”
When I finally decided to go to the doctor in September, they were like, “You know, it probably is a cyst, but I guess we'll send you for the mammogram.” Even though, because I was only 34 years old, they weren't thinking that it was much of anything. When I went to get the 3D mammogram, because I had dense breasts, they told me that same day that they were 99 percent sure that it was some form of cancer. That's kind of all that I heard. You could imagine being a young woman, you're at a radiology place by yourself, and now you've just been hit with this news. You have to drive home to deliver the news. So much was going through my head at that time and I had to wait about 2 weeks in order to get the biopsies to determine what type of cancer and how advanced it was. I found out October 1st, 2019 that I had something called invasive ductal carcinoma and it was already starting to spread out, you know, towards my underarm and up my neck. And the rest is history.
You and I had a chance to have a conversation about some of the things that you went through, from a physical standpoint. What were some of those pieces that you went through? And then, I want to talk about the financial implications that it had on your family. So, tell us some of the things, as you were going through treatment, what was happening to you, that then led to the next question about the financial impact?
When you're first diagnosed, you have all these thoughts going through your head, and I just let the doctors make a lot of the decisions about the type of treatment. The first thing we did want to do was the genetic testing, because my half-sister had breast cancer at the same time, which is very important. We found out that it came from my father's side. From there it was just like, “okay, so we're going to remove the tumor.” I opted to have a bilateral mastectomy, and for those that don't know, that means both breasts removed. I knew that there was a chance that I would have to do chemotherapy, but we had to wait for, you know, the Oncotype test to come back.
I thought that after that I'd get my implants and life would be grand, but that's not how life works. My initial surgery was 3 days before my daughter's birthday, so I missed her birthday. She was five and she turned six. They took the tumor out, put tissue expanders in to get me ready for the breast implants. Everything was okay for a couple weeks and I kept being hospitalized. I was getting seromas, which is like fluid buildup. I had that like eight different times. The last time it was just a little bit different. Like, I felt a little bit different. And it turns out that I had sepsis. They had to do an emergency surgery – now stay with me. I had just had the surgery maybe 2 months prior.
So, now we had to do emergency surgery to take the tissue expanders out. As they took the tissue expanders out, they put the implants in, hoping that would just be that and we wouldn't have to worry about anything else. Well about 2 months later I developed sepsis again, had to have another surgery, get the implants out. So, now what do we do? Do we do more implants? Do I just stay flat? And from there I was just like, okay, I can't do this. Because that was already four surgeries within a very short amount of time and my body was already going through so much trauma. The thing that I would like to say about the surgeries is that, depending on what type of insurance you have, there's always a copay. So, every time I had to have the surgery, that was a $500 copay. Now we're talking about $2,000 that I spent just on copays alone, for surgeries. Not even adding on the eight times that I was hospitalized because of the seromas or due to having sepsis twice. So, it was a lot. It was a lot.
It sounds like a lot, and I'm sorry that you had to go through that. I just can't imagine, when you talk about eight surgeries – that alone is a lot for a person to go through, and then to hear sepsis.
Can you talk a little bit more about the financial impact that it had? I mean, you're dealing with these things physically and then there's the financial worry that goes along with it. Let's jump into the financial impact. I know you started to talk about that with the copays and sometimes we don't have that kind of money just laying around, right? Tell us a little bit about how this impacted your family financially. What all did you go through?
So, I was on what started off as short-term disability because, you know, you don't know how your body's going to heal or react to things. I knew I had to do chemo, so right then and there, boom, you're already hit with a pay cut and within that pay cut, if you have insurance through your job, you still now have to pay that premium that would normally just come out automatically from your paycheck. So, that was a hefty amount, because I had the insurance. And I'm like, well, we're going to have to pay it, or how am I going to receive my treatments if I don't pay it? That's almost $700 in itself, a month, that I had to pay out of my disability, which you only get 85 percent of your pay.
I'd like to add that right as I was doing chemo, it was the beginning of COVID. So, then COVID hit and now my daughter's home doing virtual learning. I'm trying my best to not throw up every 5 minutes. My husband winds up stepping away from his job to take care of us, because I couldn't try to get better and take care of my daughter, too, while she was doing virtual learning. It was really hard for me. There were days where I couldn't get out of bed. So, with that being said, with my husband leaving his job, he was on unemployment, but once again that's another major pay cut because you're not getting your full paycheck. We blew through all of our savings with all of the surgeries that I had to do. And as many times as I had to go to the hospital, even just the hospital stay overnight was like $100. You do that eight times, that's $800. My mom wound up doing a GoFundMe page because I was like, I don't know how we were going to make this work without some type of additional help.
So, in that aspect, I felt like a burden on everyone, on my family members, on my coworkers, because now I can't be at work. It was really, really hard. I wound up having to file for bankruptcy because I have student loans that I had to pay that were like $700 a month. You have your car, you have food, you still have necessities of rent, gas, every time I go to the doctor, that's a copay. So, it was really tough. It was a really tough position to be in and kind of navigating, “well, what can I pay this week that maybe I can't pay next month?” Or you know, vice versa.
And we tend to call that, you know, “rob Peter to pay Paul.” Right? A lot of us are finding ourselves in those situations when it comes to our health. When we are experiencing some type of health crisis, we're having to balance, what do we do when we take a loss in income?
I do want to say, I commend your husband for taking a step into caring for the family. I can only imagine as the head of the house, the husband, doing what he has to do to take care of the family and the impact that that may have had on him. We can get into having a conversation a little bit about that later. I know in our next session, session three, we're going to be talking about family and the impact of breast cancer on family. And that's one piece of it: the financial impact that it has, not only on the individual that's diagnosed with the disease, but the whole family and how we have to step in, even with your mother having to create the GoFundMe account for you. So, let's fast forward. You mentioned that you were on bankruptcy, you were in a hospital several times, your husband had to leave work. How are you doing today?
Today, much better, but I feel like we still haven't financially recovered from all of this. We were saving to moving to a house and now that can't happen for multiple reasons, number one, because we just don't have the money that we once had. Number two, when you file for bankruptcy, unfortunately, now you have to wait, I believe it's 2 or 3 years before you can even apply for a loan for a house. It's really put us in a, I don't want to say a bad position, but I just didn't think that I'd be here at, at this stage. I had always dreamed of my daughter being in a house and her own backyard, and that just hasn't happened. In a way I kind of feel like a failure. It sounds crazy to say, and I shouldn't feel that way because you can't help having cancer. But I also can't help feeling guilty about not giving my daughter and my niece the things that I had planned for them to have, or wanted them to have.
Well, Kiki, I really, really appreciate you sharing your story, and we're going to bring you back on. What I want to do right now is I want to bring Joanna to the screen. Joanna has a great presentation that she's going to share and she'll be able to answer some of the things that Kiki has actually gone through. Joanna, if you can come on and share some information, great information, with us, and we'll bring Kiki back on during our Q&A session.
Joanna L. Fawzy Morales, Esq.:
That would be my pleasure. I want to start by sharing a little bit about our programs and services at Triage Cancer. Our organization was founded to help people navigate the legal and the practical issues that come up after a cancer diagnosis. But those things are all things that have an impact on finances, and it's often things that you don't think of as legal issues. Like, how do you get insurance and how do you actually use your insurance effectively, and how do you take time off work and not lose your job? How do you access disability benefits or manage your medical bills, or your consumer rights or estate planning issues? All of those things are things that we provide free education on. We do that by hosting free events. We also have an endless number of educational materials and resources. We want people to have the information that they need to make educated decisions.
And really, all of that is to try to avoid the financial burden of a cancer diagnosis. There is a term that we now have become more familiar with called “financial toxicity.” This is really something that is a new term, but it's not a new problem. I've been doing this work for almost 30 years in the cancer community and it's always been difficult to pay for cancer care. It's just gotten so much worse. And it is great that the cancer community is paying more attention to the financial burden of patients, but we haven't solved it yet. So, the problem is that there's so many contributors to financial toxicity that it's not easy to solve at Triage Cancer. We think that the number one contributor to financial toxicity is actually having adequate health insurance coverage, and making sure it covers enough of your care so you don't have those huge out-of-pocket costs, but you also have to know how to use your health insurance coverage effectively to avoid those unnecessary out-of-pocket costs.
Then there are other things, besides the cost of care, which often get ignored as contributors to financial burden, and it's work. If you have to stop working, then that's going to have an impact on you. I spoke at a conference of doctors a few weeks ago and I told them, even if you made cancer care free, there'd still be a financial burden if people had to take time off work to get that treatment. So, we don't recognize how that impact on work can have on someone's finances. We also don't talk about disability insurance very often, and that if someone has cancer, there are still things that happen in life that can have an impact on your finances. Getting married, or divorced, or moving, or graduating from school, all of those things are going to have an impact on your finances.
Because we think that health insurance is the number one thing that people need to understand to mitigate financial toxicity, we talk a lot about health insurance. Unfortunately, it's hard to do that because no one in the United States actually understands health insurance. That used to be my anecdotal experience, but now I have the data to back it up: 98 percent of Americans can't define the four key terms that are used in health insurance. So, how, as educated consumers, can we actually make decisions about health insurance? It's not surprising that 40 percent of people don't actually know how to pick. Only 40 percent of people actually know how to pick the right health insurance plan for them because they don't know the words that are being used in health insurance.
I want to talk for a minute about those words. I also want to talk about the fact that there's only three places in the United States where we get health insurance coverage. We're either getting it directly from an insurance company, we're getting it through the government, or we're getting it through an employer. And about 50 percent of people in the United States still get health insurance coverage through an employer. It's really important that everybody understands all of their health insurance options because you might only know about one option, but if you don't know about all your options, you can't really make educated decisions and pick the best plan for you if you think there's only one option available to you. At Triage Cancer, we do have an endless number of resources to help you understand your health insurance options and access those options.
Now, going back to those terms. These are the terms that we think are most important for people to understand. Regardless of what type of insurance you have, there are costs just to have health insurance coverage and we refer to those as our premiums. It's what we pay each month just to have health insurance coverage. But then there are specific costs that we pay when we go and get medical care and we use our insurance, and Kiki alluded to some of those things.
Your deductible is a fixed dollar amount that you have to pay first, before your health insurance coverage even kicks in. You might have a $50 deductible, or you could have an $8,000 deductible, depending on the plan that you have. Then there's something called a copayment, and that's also a fixed dollar amount that you pay when you get certain types of care. You might have a $10 copayment to see your primary care physician, you could pay a $50 copayment to see a specialist, you could have a $500 copayment if you have to have surgery. And that's different from coinsurance or cost-share. Those are two terms that are used the same way, and it's the difference between what insurance companies pay for our medical expenses and what we pay. We're literally sharing the cost. So, if you have an 80/20 plan, the insurance pays 80 percent and you're responsible for 20 percent.
Probably the most important thing that anyone should know about their health insurance coverage is their out-of-pocket maximum. That's the most that you're going to pay out-of-pocket for your medical expenses during the year. In a worst-case scenario, you can plan around the most that you'll have to pay. And how you reach your out-of-pocket maximum is you get to add up what you pay for your deductible, plus any co-payments, plus any co-insurance amounts to help you reach your out-of-pocket maximum. You might have a $1,000 out-of-pocket maximum, or maybe you have a $10,000 out-of-pocket maximum, but when you reach those numbers, then your insurance will kick in at 100 percent for the rest of the year.
To give you an example of how this works, Dan has a plan that has a $2,000 deductible. It's an 80/20 plan and he has an $8,000 out-of-pocket maximum. He spent a week in the hospital and he walks out with $102,000 hospital bill. What does he actually have to pay of that bill, assuming he's had no other medical expenses during the year?
First, he'll have to pay his $2,000 deductible, which leaves $100,000 left of that bill. Then the insurance will pay 80 percent ($80,000) and he's responsible for 20 percent – which leaves him with a $20,000 bill. How much does he actually have to pay of that $20,000 bill? He has an $8,000 out-of-pocket maximum, and he's already spent $2,000 towards his deductible. So, he only has $6,000 left to pay of his bill and his insurance will kick in and pick up the rest. I'm not suggesting that $8,000 isn't a lot of money, but it is better than if you didn't have an out-of-pocket maximum and you'd have to pay that full $20,000 bill.
Everything I just described about Dan is actually in one of our animated videos on Health Insurance Basics, in case you'd like to see it again.
Now I want to walk you through a quick exercise on how you pick a health insurance plan that has the lowest out-of-pocket costs. This exercise is useful if you are comparing plans on the marketplace. If your employer gives you more than one choice, you can also compare what your employer offers you to what's available in the marketplace. Then you can also compare Medicare Advantage plans using the same exercise.
So, here we have three plans. We have a bronze plan at $200 a month, with an $8,000 out-of-pocket maximum. Then we have a silver plan at $275 a month, with a $6,000 out-of-pocket maximum. And a platinum plan at $400 a month, with a $2,000 out-of-pocket maximum.
Can you tell just by looking at these plans, which is actually going to cost you the least by the end of the year, assuming that you are going to hit your out-of-pocket maximum? Because when we're talking about the cost of cancer care, that's pretty likely. So, “no” is the answer. You can't actually tell by looking at them, you have to do the math. The way that you do the math is you take the monthly premium and you multiply it by 12, and then you add that to the out-of-pocket maximum, because that's how much it will cost you to have the plan for the year plus the total out-of-pocket costs for your medical care during the year. So, here we see that the platinum level plan actually ends up saving you a couple thousand dollars by the end of the year, even though we might get sticker shock when we see that monthly premium at $400 a month.
Unfortunately, most people are picking a plan just by looking at the monthly premium and not by looking at the out-of-pocket maximum. Because we don't know what that means. So, we want people to understand how to do this math so that they can pick the best plan for them, because when we're talking about how do we lower these out-of-pocket costs, this is how we do it. By making sure you have adequate health insurance coverage.
But it's not just about cost. You also have to make sure that any plan that you're looking at actually covers the providers that you're going to and the prescription drugs that you take. Because if you pick a plan that doesn't cover those things, then it's pretty useless to you and you're going to have those higher out-of-pocket costs. Now at Triage Cancer, we feel pretty strongly about the importance of picking a health insurance plan that works for you. We have a 5-minute animated video that talks about how to do that, and we also have this worksheet that we recently created that you can use to do the math. You can take two plans and plug in their information and figure out which plan is actually going to cost you least. It helps you do that math. We have a version that works for private insurance like individual or employer plans, and then we have a version, if you have Medicare, to help you make Medicare plan choices.
I want to turn for a minute to a key aspect of knowing how to use your insurance effectively that contributes to financial burden. It's pretty common for insurance companies to deny coverage. At some point during your care, it's pretty likely that you're going to come across a denial where your insurance company says, we're not going to cover that. Unfortunately, most people take no for an answer and they accept that denial instead of appealing and asking for the insurance company to reconsider. Going back to the insurance company and asking them to reconsider is called an internal appeal. It's inside the insurance company. If they still say no, you can go and get an external appeal, if you have an individual or an employer-sponsored plan. That's where you get to go outside of the insurance company to an independent entity and say, my healthcare team thinks this care is medically necessary that they've prescribed for me. We think that you should agree with us. And if the external review does agree, that decision is binding on the insurance company and they have to cover that care overall across the country.
About 50 percent of the time, external appeals are overturned in favor of patients. So, patients win their appeals 50 percent of the time. But, unfortunately, no one is using this process. And when I say no one, I mean 99.9 percent of people are not using this process. This is data from marketplace plans from 2019, and there were 40 million claims denied that year by insurance companies. If we think about those 40 million claims, and only 99 percent of people actually appealing those claims, and about 50 percent of the time the insurance company was probably wrong – based on what we know – that means there's 20 million claims where if someone had appealed, they'd be more likely to actually get access to the care that was prescribed by their healthcare team.
What that really means is that 20 million claims equal 20 million people who either didn't get access to the care prescribed by their healthcare team because their insurance denied it, or they paid for it out-of-pocket, which only contributes to the financial burden of care. So, we think the appeals process is so incredibly important. It exists as a consumer protection and we want people to use it. I would encourage you to spread the word. We do have a lot of resources to help you navigate the appeals process, regardless of the type of insurance that you have.
I want to turn for a minute to employment rights. When we're talking about employment rights, there's actually a lot of places to go for information on what you have access to. There are fair employment laws that protect you against discrimination at work based on your medical condition, but also give you access to reasonable accommodations. Reasonable accommodations are any change at work that can help you stay at work, return to work, or even potentially take time off of work. Those fair employment laws exist at the federal level like the Americans with Disabilities Act, and they also exist at the state level. Sometimes the state laws are even more protective than the federal laws, or they're the only thing that you have access to. It's important not just to know what's available to you at the federal level, but also at the state and local level, as well.
Then there are also laws called leave laws. These are laws that allow people to take time off work and get access to job protection. Those again exist at the federal level like the Family and Medical Leave Act or at the state and even local level. Then we forget that we might actually work under an employment contract so that employment contract or union bargaining agreement also can tell us what we have access to at work in terms of our employment rights, benefits, and protections that we have access to. Then there are many employers that go above and beyond the bare minimum of requirements under the law and they provide more benefits. In most cities and states across the country, employers are not required to give you sick days. If you have access to sick days at work, that's not because the law requires it, it's because the employer is offering that to you. If you have the ability for your coworkers to donate their hours to you, that's specific to an employer policy. If you have access to disability insurance, or life insurance, or even health insurance at work, those things are specific to your employer. It's very important that you actually know what your employer rules are with respect to these benefits, so you know what you have access to.
Disability insurance is the type of insurance that replaces your wages if you need to take time off work because of a medical condition. Most people don't proactively buy disability insurance, and unfortunately a 20-year-old has a 1-in-4 chance of needing disability insurance before retirement age. There are private disability insurance policies that you can buy directly from a company, but most people don't do that. We, as a society in the United States, don't proactively do that. Most people get access to disability insurance as an employee benefit through their employer. And I can't tell you the number of people over the years who said, “oh, I don't have that.” And I sent them back to their employee manual and it turns out it was just a piece of paper they signed on their first day of work and then they forgot all about it because the employer paid the premiums. It's definitely worth checking to see if you have access either to a short-term or long-term disability policy at work.
There are a handful of states that actually offer state disability insurance, where employees pay into the state system through their payroll taxes. But it's just a handful of states. It's only California, New York, New Jersey, Rhode Island, Hawaii, and Puerto Rico. If you want more information about these state specific programs, you can find that on our quick guide to state disability insurance and on our state resources page.
That brings us to the two long-term programs run through the Social Security Administration, which are called Social Security Disability Insurance, which is SSDI, and supplemental security income, which is SSI. Those are both run through the SSA, and they don't make it easy for us in naming these programs.
If you have a medical condition that is expected to last at least one year or longer, and that's keeping you from working, you might qualify for these programs. I know that all of this is easier-said-than-done. While we do have events and a huge number of resources to help people navigate these issues, you might have individual questions, and I've been seeing some of them in the chat box. If you have questions where you want personal assistance in navigating any of these topics and many more, we can help. Go to triagecancer.org/get help, you can actually go on and schedule an appointment to talk with one of our staff, for free. We will help walk you through your options, understand how the laws apply to your situation, and what benefits you might have access to, so that you can take educated next steps. With that, I'm going to turn it back over to Tiah.
Awesome. Thank you so much Joanna, for sharing all of those great nuggets. I'm sure we have a lot more to share because I see the questions flowing through the Q&A. But before we jump into the Q&A I want to bring Kiki back on, once again on camera so we can ask more questions and talk about this.
Joanna, I want to start with you. Your advice and strategies were really about how can we go about avoiding bankruptcy, but as we heard Kiki share, her family ended up declaring bankruptcy. Can you talk a little bit about the impact of bankruptcy and any advice that you have if that is really your only option? Are there any strategies that you can share with what can we do after we declare bankruptcy?
Joanna L. Fawzy Morales, Esq.:
Absolutely. Sometimes bankruptcy is unavoidable and it's actually the best option to deal with all of the debt that's accumulated. Unfortunately, we know that more than 60 percent of all bankruptcies in the United States are based on medical debt, and that more than 78 percent of people who had to file bankruptcy because of their medical bills actually had health insurance. So, if that many people have health insurance and still have to file bankruptcy because of our medical bills, clearly it's not working the way that it's supposed to. We are constantly working in the advocacy community to improve the quality of our health insurance coverage. But if you do have to file bankruptcy, there are ways to come back from that financially. Unfortunately, a bankruptcy actually stays on your credit report up to 10 years. That is a long-term impact, where your credit score is going to take a hit because of that bankruptcy.
These days, everything is connected to your credit score. So, whether or not you can get cable is whether or not they're going to check your credit. If you want a job where they do a background check that includes a credit check, that can have an impact. So, using some strategies to improve your credit score can be useful. There are a lot of them, but I do want to mention a really useful resource. There is the National Foundation for Credit Counseling, which has local agencies that can help people with budgeting and regrouping on your finances, so that you can figure out which of those strategies are best for you. There are simple things you can do to improve your credit score, like paying bills on time, or getting a secured credit card, where you go to a bank and you actually give them $500 to put in a savings account and then they give you a secured credit card for that $500. When you use that credit card and you show that you are responsible in using it and then paying it each month, it actually helps to reestablish your credit and shows that you are someone that they can give credit to in the future.
We work in this very weird system, but there are basic steps that you can take to boost your credit score back up. I would definitely recommend anyone who is in that position to contact, nfcc.org to learn about some of those strategies, and budgeting for your finances moving forward.
Thank you for sharing that great resource. If we can get that posted in the chat for everyone, I see the comments coming in saying, “Hey, what is that again?” We'll definitely get that in the chat in nfcc.org. Did I say it right?
Joanna L. Fawzy Morales, Esq.:
All right, this conversation is so timely because this is open enrollment season right now. Thank you so much, Joanna and LBBC, for bringing this conversation to the forefront.
Now, we were talking about a little bit about financial counselors and patient navigation, and we hear those quite often. Kiki, when you were first diagnosed, I know a lot was going on in your world, trying to make treatment decisions, thinking about your daughter, thinking about your husband, and just the overall diagnosis. Can you tell us if you were offered a financial counselor or a patient navigator, and what was that like for you?
I actually was not. I found out way after all of my surgeries about different places that have grants that could have helped me. And I was a little taken back because I'm like, as part of your treatment plan, why don't they talk about these things? Here you are, the patient, you're already going through so much as it is. And I feel like the financial burden on me personally, I can't speak for other people, was a huge part of why I feel like I couldn't heal properly. I'm still dealing with some aspects of that, due to that. And I'm like, wow, something so simple as just saying, “Hey, you know, even if you may not need it, here are some resources for you, some places that you can go to seek financial help.” Maybe it was just me being oblivious because maybe I should have known that information, but I honestly didn't. I didn't, and I don't think a lot of people do.
Yeah, and Kiki, I was going to say, you're not alone because a lot of us are not told about patient navigators or financial counselors within our hospital networks. Joanna, I want to ask you that question. We know that, generally, we would hear about these types of things or resources available, like a financial counselor or patient navigator. But what if they aren't provided to us, or if we don't live in an area where these resources exist? Like some of the rural communities or where hospitals, unfortunately, have even been closed down? What can we do when we have these situations?
Joanna L. Fawzy Morales, Esq.:
I think the hardest part about this is that there's not a one-size-fits-all answer, because depending on where you're going to get care, the person who might have this information could be called so many different things. It might be your social worker, it might be your navigator, it might be your nurse, it might be the person at the front desk who has all the resources. It might be a financial counselor or a billing person. There are so many potential people who could have this information, but we say all the time, we don't know what we don't know. If we don't ask questions about what's available, no one's providing the answers proactively. That's really where the breakdown in the healthcare system is, is that the healthcare team needs to be telling patients proactively.
I have to be honest this is a huge pet peeve of mine, because a couple weeks ago I spoke at that conference – hundreds of doctors – I sat on a panel, and every other person on the panel talked about their research about whether they should be asking patients if they're experiencing financial burden. And I'm like, I think we should be just sharing the resources to proactively avoid financial burden. I think that's not a relevant research question anymore. Everybody is going to experience financial burden in some way, shape, or form, if they're having to take time off work or pay for the cost of care. So, I think that's a shift in the advocacy community, but healthcare providers also need to hear it from you. You need to be pushing them and asking questions about what's available so that they can help connect you to those resources. I will say, if you don't have any of those resources at your community, it's why so many resources exist in the cancer community. There are so many organizations that are available to help connect you to resources. If we're talking about finances and managing these topics, we can do that through our navigation program as well.
Yeah, and you know, as you were talking, I thought about how we see domestic violence. It's one of the questions that they always ask, it's a mandatory question that they ask in the hospital systems every single time that you go. And if we're asking those questions, I think the next piece to that should be the financial assistance piece. They can't make an assumption because we don't know everyone's financial circumstances, but I think it should be something that we should get out here and definitely advocate about, and help push for them to make that a mandatory ask or a mandatory share for every single patient.
Let's get into this. Kiki talked about not knowing about grants or any kind of financial assistance. You mentioned that there are a lot of programs that are out here. People are developing their own nonprofit organizations to get resources to people simply because through our own individual experiences, maybe they weren't available. Can you share some of those resources that may exist? We've seen some people posting recommendations in the chat, but what are some other resources that you can share?
Joanna L. Fawzy Morales, Esq.:
So, we try to keep track of that on our cancerfinances.org website. If you go to cancerfinances.org, it has information on different topics that can impact your finances and has a list of financial assistance resources. But I will tell you, I learn about new ones every single day. So, the help is out there. The problem is how do you connect to it? I would say starting with your healthcare team is most useful when you're looking at local resources, because they're most likely to know what's locally available, but you can also start with LBBC and other national cancer organizations that have more information on national resources. Google is a double-edged sword. It can be your best friend and it can also be your worst enemy because you can find really bad information on Google that isn't accurate. But in terms of looking for financial assistance, I think that is actually also a good place to start.
And on your website, is there a way for small, grassroot nonprofit organizations to be able to share their information, so that they can be put into your directory?
Joanna L. Fawzy Morales, Esq.:
Absolutely. If someone sends us an email at email@example.com we will happily add you to the list of available resources for people.
Awesome. Thank you. So, let's jump into this. We talked about grants, we talked about patient navigators. When we think about the grant, that process can be very cumbersome and it can be a big burden, or a barrier, especially if you're undergoing treatment. Some of the questions that they may ask may be a little bit inappropriate, or rather, maybe uncomfortable. What happens when we find us in those circumstances when we're trying to go through these questions and we're answering them, but it may be something that's uncomfortable? Do we just say, nope, I'm not going to respond to them? Do we contact the grantor? What should we do, and are there any questions that, honestly, the grantor should not be asking us? Especially now, with all the data breaches that we're seeing?
Joanna L. Fawzy Morales, Esq.:
That's tough, because they're giving away money. They typically have a responsibility to do that responsibly and to keep track of where the money's going. It's likely that they are going to have a process that you have to go to go through to get that financial assistance. I would say, if you felt uncomfortable about any question, that you communicate, because they might not even realize that it's the type of question that would make you feel uncomfortable. They might appreciate that feedback.
I think probably the thing that's most important to have on hand when you're applying for financial assistance is your tax return because a lot of them are going to ask for your income level and proof of that. That usually is going to come from your tax return. If you're in a situation where you haven't even been able to file your taxes, because that's been a challenge because you're focused on your health or because you didn't have the money to file, there are actually some resources available to help you file for free. There's something called VITA, it's the Volunteer Income Tax Assistance program. These are people who've been trained to help members of the community file their taxes. They're often at local law schools or other types of community resources, but if you Google VITA, you can find local clinics near you.
And sometimes even with that, asking for the tax returns can be somewhat of a nuisance, or a barrier to some folks, because people lose their jobs, things change, you know, so it does make it a little bit more challenging.
But let's jump into workplace issues. We know that going into the workplace, having a diagnosis of breast cancer can be a bit challenging. Joanna, can you talk a little bit more about workplace accommodations and how we go about requesting them without sharing too much personal information?
Joanna L. Fawzy Morales, Esq.:
Accommodations are that really useful tool that's available under federal or state law if you qualify as having a disability – and having a cancer diagnosis can qualify as having a disability under fair employment laws. Those reasonable accommodations are an incredibly underutilized tool that can help you stay at work and help you manage your side effects at work. It's a tool that can help you get back into the workforce faster, in getting help with doing your job. It might be actually be the thing that you use to take time off of work. If you work for a smaller employer, or haven't worked long enough to get access to the FMLA, you could tap into the ADA, potentially, to take time off work. So, reasonable accommodations, unfortunately, when you ask for one, you have to show why you're eligible for one, and that sometimes requires disclosure of your medical information.
However, most of the time your need for an accommodation is actually not based on the cancer diagnosis itself. It's actually based on a side effect from treatment. And oftentimes those side effects are actually medical conditions on their own. So, you could talk about having those medical conditions without ever tying them back to an original cancer diagnosis, if that's something that you don't want to share at work. And everybody feels very differently about disclosure. It's a very personal decision. Some people feel really strongly they want to disclose at work. Some people are really concerned about sharing that at work. The ADA and the FMLA provide a lot of protections around your privacy of your medical information at work. And we do have a quick guide to disclosure on our website that really explains exactly how the law protects you and what you do and don't have to say on those forms. We also have a webinar on disclosure, both for work and at school.
Thank you for sharing. Kiki, we were talking about workplace accommodations. What was your experience like while you were working and navigating your breast cancer journey? Did you have to ask for any kind of accommodations? And if so, what was that experience like?
Once I got back to work after about the third time being out, I felt this is playing more on the mental aspect of cancer and what it does. I felt that maybe my coworkers were like, “oh, she was out again,” or that I was using the “cancer card” to not want to elevate or persevere in my career, which was totally not the truth. I feel like because they don't know the impact that cancer can have on your life and the aftermath and symptoms, I had to ask, “I know it gets really busy, but sometimes I may just have to just sit down and take a 10-minute break, just because sometimes I just get really fatigued,” having neuropathy down in my legs and in my hands. I was used to just going, going, going, and even things as simple as just lifting, is kind of a chore for me because I don't have a lot of feeling in my arms or in in my hand, sometimes.
It took a lot for me to have to ask for the help. And once again, I'm going to go back to the mental aspect, because I did have a coworker say to me, “you can't keep using that” – almost like an excuse to not want to elevate. In my head, I felt like that's how all my coworkers felt about me. I made me not want to ask for the help even though I know I really, really needed it. So, it was like, is this really how they feel, or is this just one individual and am I overthinking this situation? Because within the 2.5 years I was out I think four or five times, I didn't know how to really feel.
Even though my boss was accommodating, in the back of my head, I was like, “oh, is she just doing that because she feels sorry for me?” I had so many different questions, which brought a whole different level of anxiety for me that I probably didn't even need to feel. I felt like it was torture, honestly. Like I was torturing myself over not wanting to feel like I was getting treated special, but I just physically couldn't do the job the way that I used to. How do you navigate through that when you're used to being fast-paced and now you're not so fast-paced, or it's hard to even hold a cup without dropping it, you know? I was embarrassed, honestly.
And you know what, what's hard about this disease is, when it comes to people who have never been ill or are not familiar with what it's like to navigate a breast cancer diagnosis because they can't see what's happening to our bodies, they connect themselves to the things that they can see: whether we lose our hair or our nails turn colors, or if we're using a cane or some kind of walker. But when those types of things don't present itself, it makes it hard for people around us to really understand what we're going through. And so, hearing what you're saying, it puts us in those positions where we feel these kinds of ways where we don't want to be a burden, but we also want people to understand we're really, really having some challenges.
Thank you so much for sharing what you went through as you were navigating your journey in the workplace. Joanna, I want to ask you this question. As we continue to talk about workplace issues, I've heard about people being let go from their job either while on short-term disability, or they may be in a hospital and the short-term disability ends. What can they do in those situations? The second part I want to ask this question is, what do we do when our jobs don't offer that short-term disability?
I want to really quickly highlight a story that LBBC shared. It's a blog that you can read on LBBC.org, and it was about a young lady by the name of Patrice, and what she shared was, with regards to the financial impact of breast cancer, is that her job was completely commission-based. So, if there's any advice you can share for when we work in these types of industries that don't provide a lot of benefits or support for us. I'll repeat that. What do we do when we find ourselves either on short-term disability, getting let go from our jobs or we just end our short-term disability, but we may be in the hospital and we get let go? What are the things that we can do?
Joanna L. Fawzy Morales, Esq.:
I do want to say anyone in that situation who is concerned about losing their job, if they're coming to the end of their short-term disability, to contact us because you want to understand what all of your options are specific to you. Unfortunately, there is no job protection that comes with short-term disability. I think we hear that from physicians a lot. “Oh, just go out on disability” – as if that's something everybody has access to or that solves the problem. And short-term disability is just about money. It's about replacing lost wages. It doesn't have any job protection in it. So, the place you get job protection is from the Family and Medical Leave Act. Or, if the employer has a policy that says we’ll hold your job for you for X period of time. So, understanding what you have access to is going to help determine what you do next.
If you can't go back to work at the end of your short-term disability leave, what are the options? Can you still hold your job? Are you going to lose your job? Are you going to need to figure out how to keep your health insurance or understand all of your health insurance options so you pick the best one? Or can you transition to long-term disability insurance? Do you have a private policy? Do you have access to social security disability benefits? Understanding those transitions is often where people miss out on some of the protections and benefits that exist because they heard from their neighbor, “oh, I should do this next.” But they don't know all the things that they could potentially do to figure out what's best for them. So again, I feel like I'm beating the drum tonight to say, make sure you understand all of your options. I know it's so much easier-said-than-done, but that's also why we exist, to make sure that you understand those things that are available to you, so you can pick your best path forward.
If you work in a job that doesn't offer a lot of benefits, or maybe no benefits, if you're self-employed, or if you have a gig job, then you don't have access to some of the benefits that an employer might be providing. But that doesn't mean you have no access to benefits. If your job doesn't provide them what's available to you at the state or federal level, that could step in to provide some of those protections. And then also understanding how you handle things moving forward. If you haven't been paying into Social Security retirement benefits, maybe that's something you need to start doing so that you can actually tap into Social Security Disability Insurance moving forward. There's some strategy involved and there's not fantastic answers for everybody, but there might be some.
Thank you. I want to jump into this health insurance. Like I said, this is so timely, having this conversation. I'm going to ask you a few questions around health insurance. First and foremost, as we're navigating our health insurance, what are some of the things we need to be aware of when we're diagnosed with breast cancer? What are things that really stand out that we should look for?
Joanna L. Fawzy Morales, Esq.:
Well, I think I mentioned checking to see if your policy is adequate. Even if you have a policy right now that has huge out-of-pocket costs, so maybe it has a super high deductible or a super high out-of-pocket maximum, we're in open enrollment season. Can you change your plan moving forward? If you have a marketplace plan, we're in open enrollment. If you have Medicare, we're in open enrollment. If you have an employer plan, they often have fall open enrollment. It's definitely worth checking to see what you have access to and those options change every single year.
I want to just throw out some perspective. A lot of people discount the marketplace because they think the premiums are too high, but 4 out of 5 people in the marketplace can find a plan for $10 or less per month. The additional financial assistance that was in the American Rescue Plan Act and the Inflation Reduction Act, that's huge. If that many people can actually find a plan across the country for $10 or less per month, check. Check to see if you can qualify for one of those plans because you don't know unless you check, and open enrollment just started. It's worth taking a look.
Speaking of open enrollment in the marketplace, what kind of advice would you give to those who may have lost their jobs, and now they're trying to start a new business and be an entrepreneur and self-employed? What can they look for when it comes to insurance?
Joanna L. Fawzy Morales, Esq.:
I think understanding that you do have different plan options. If you're leaving a job, COBRA's available to you, and a lot of people say, “well, oh, COBRA premiums are too much.” But if you already met your out-of-pocket maximum for the year, even if you have a higher monthly premium for COBRA for the rest of the year, if you know that's all you have to pay for your care and everything else is going to be free in terms of the medical care that you're receiving, maybe that's less than getting a new plan and having to meet that deductible and out-of-pocket maximum again. The math becomes really important when we're talking about health insurance and figuring out which is financially going to be better for you. And again, I know it sounds so much easier-said-than-done, but we do have some strategies to help people figure that out.
Thank you. Now what about those who are underinsured or not insured? Are there any resources for those individuals? And one thing I want to add to this conversation is when it comes to the insurance piece, especially Medicaid and Medicare, where do we draw the line when it comes to a diagnosis? I see some of the questions in the chat and some of the statements in the comments. Sometimes our doctors will say we are not undergoing treatment. What constitutes treatment? For those who may have made a decision, I may want to do surgery, I don't want to do radiation, or I don't want to do chemo, but there is still cancer in their bodies and they're still trying to address the cancer, what advice can you give in those situations?
Joanna L. Fawzy Morales, Esq.:
I do want to clearly say your preexisting medical condition is not a reason that you can be denied health insurance coverage, or be charged more because of it. If we're talking about marketplace plans or employer-sponsored plans, there are, unfortunately, a couple of different types of plans that have been allowed by the past administration to allow denials for people with preexisting conditions. Those are short-term health insurance plans and association plans. And if you want more information about that, I'm happy to answer those questions. But it is important for you to know you can't be denied insurance. It doesn't matter that you've had a breast cancer diagnosis, and whether or not you've completed treatment or are still in treatment, you can still get access to health insurance. I again would recommend that people look to see what their marketplace plan options are if they're currently uninsured, because now we are in open enrollment. Even if you sign up today, your coverage won't begin until January 1st because it's a calendar year plan. But at least it's a way to get health insurance moving forward.
Thank you. I want to jump right into some of the Q&As that are coming in, I see them popping up on my screen. We talked about resources. I want to jump back to this. Some of us just don't have support, we don't have family members around or our community around us. What are some resources that we can tap into like home care support or mental health support? Are there any resources that are available that we don't have to pay a whole lot of money for?
Joanna L. Fawzy Morales, Esq.:
That's a lot harder of a question to answer. Your insurance might cover some of those things, but there are a lot of resources within the cancer community that provide free access to care. There are organizations that provide free access to integrative therapies or programs that give you access to free yoga or reiki or massage. There are so many programs that exist in the cancer community. I think tapping into LBBC's resource lists and understanding what you might be able to get for free can help with those out-of-pocket costs.
What about situations where you have health insurance with your job, you have short-term disability, and you have a cancer policy as well? How much does it actually help financially, after a diagnosis of breast cancer?
Joanna L. Fawzy Morales, Esq.:
If you have a cancer policy, that's actually not a health insurance policy. It's called a supplemental policy. That is actually really beneficial because it's not going to cover your medical expenses. It's going to give you cash. Those cancer policies could do things like, if you need to have surgery, they're going to write you a $10,000 check. If you need to travel to treatment, they might cover your hotel and airfare. If you're getting annual screenings, they might be paying you $75 because you go and get a mammogram. Those cancer policies are supplemental to health insurance and they give you money for things besides your medical expenses, that you can use for anything. So, that is helping you financially and you get to make choices about how you want to use that money, either to pay medical bills or other daily expenses.
What about some of the pharmaceutical companies? Do they have any programs to help offset some of the cost of our medical expenses, or anything else?
Joanna L. Fawzy Morales, Esq.:
They do. Most pharmaceutical companies offer patient assistance programs that most people are familiar with because they might have copay assistance or even free drug programs, but they also have a whole lot of other support services. If you're being denied coverage for your medicines, you can actually get help from those pharmaceutical companies to help with the appeal. They can help with connection to other resources that exist. They also have tools to help people navigate their healthcare in general. They do also offer that copay assistance specifically for your prescription drugs. I would definitely recommend looking at those pharmaceutical companies for any drugs that you're taking, to tap into those programs. On cancerfinances.org, one of those modules is on prescription drug assistance and we list all the companies with all the drugs that they offer and the contact information for all of those assistance programs.
Thank you. I want to get into the workplace once again. We talked about being diagnosed or having preexisting conditions. What happens when you're in the workplace? You may have short-term disability, but let's say you're at work, you're dealing with your chronic illness, and you get injured on the job. How does that work when it comes to workers' comp and making a claim in short-term disability? Can you speak to all of that?
Joanna L. Fawzy Morales, Esq.:
Workers' compensation is a whole other area of law, and is pretty complicated. And also, state-specific. When we're talking about workers' comp, it is very specific about the rules related to how you get assessed based on any injury that you've had at work. And they rate you in terms of how able you are to continue to do your job. That's very different from the disability insurance process. Sometimes there's overlap, depending on the rules of your short-term disability policy, and sometimes there's not. You do have to understand both how workers comp works through your employer, and then also how it interacts with your state or short-term disability policy.
Now let me ask you this question. What about when we find ourselves in situations where there's some type of surprise billing? For example, we have surgery and we're expecting it to be an outpatient scenario, and then the doctor makes a change to keep us – to move us into inpatient. Now our costs change because we're staying overnight. What do we do when we have these types of scenarios of what we call “surprise billing?”
Joanna L. Fawzy Morales, Esq.:
That's actually an example that really wouldn't be considered a surprise bill. Certainly a surprise that you have to pay the bill, but when we're talking about “surprise billing,” that's typically when we're talking about: we need to have surgery, we do our due diligence, we pick a surgeon and a hospital that's in-network, we have our surgery, we get home, and we find out that we have a surprise bill from the anesthesiologist who was not in-network. Now because they're out-of-network, you have huge out-of-pocket costs that you have to pay. That's considered a surprise bill because the provider is out-of-network. There is now a federal law that went into effect January 1st of this year called the No Surprises Act, which requires private insurance companies to treat that out-of-network provider that was a surprise as if they're in-network, and it eliminates the huge out-of-pocket costs for patients that they would have to pay if that provider was out-of-network.
This is actually one of those things where I always say, if all you needed was a law to solve a problem, you wouldn't need lawyers, and you wouldn't need law enforcement. Just having the law and the new protection isn't enough. People don't know about it, and unfortunately, people are still going to get surprise bills that they shouldn't have to pay for. We want people to be aware that there is actually a no surprise help desk through the federal government that you can actually call the hotline and get help dealing with that surprise bill, and they will help you work it out so that the insurance company and the provider have to worry about it and how they're going to get paid. But it stops being the patient's problem about that surprise bill.
Thank you for mentioning about the law. That was passed because this is the time for voting, and we definitely want to encourage everybody get out to polls and vote because these issues really, really matter when it comes to our health. We may not be in that situation today, but we very well could be in that situation tomorrow. So, thank you for bringing that up.
Joanna L. Fawzy Morales, Esq.:
I'll also just mention, that all of these laws, they're not permanent. These protections that we're talking about and these new benefits, they could go away. Congress could repeal these new benefits and protections. It is very important to engage in advocacy. Thank you for saying that.
Yes, absolutely. I would be remiss if I didn't say that, right? Okay, I want to ask you this question. And we hear this time, and time, and time again. What do we do when we file for disability and we keep getting denied? Or SSA? What do we do when we find ourselves continuously getting denied?
Joanna L. Fawzy Morales, Esq.:
Appeal, appeal, appeal, and do not reapply. Because if you reapply, it creates a new record in the social security system, which they don't really appreciate, and it starts the clock over again. You might be owed back benefits if you're going through the appeals process and then they finally approve you, they're going to owe you back benefits for that whole period of time that you were going through the appeals process. But if you reapply, the clock starts over, and you lose access to all those past benefit protections. When you are denied for social security, which is pretty common because 65 percent of all applications to social security disability benefits are denied, you have to appeal. The first step in the appeals process is called a Request for Reconsideration. And if you still get denied, then you go to an administrative law judge hearing or an ALJ hearing, and that might be your first time to talk to a human being and say, this is how my medical condition is impacting my ability to work. You are much more likely to get approved at each stage of the appeals process, but again, it is a burden. You have to walk through those steps to get access to those benefits. We do have resources to help you understand key tips on how to navigate the appeals process, as well as the application process on our website.
Now, one question that I have for you. We're talking about disability. If you're permanently disabled and your insurance covers the monthly disability cost, do you actually have to stay with that carrier? Are there any resources that help this process of having to change your carrier, or what have you?
Joanna L. Fawzy Morales, Esq.:
I might need more information in order to be able to accurately answer this question, but I will say generally, if you already have a private disability policy and your employer pays the premiums and you are no longer employed because you've been on disability benefits, it doesn't quite make sense if you would change carriers because you would be committed to that policy and it would continue to pay out its benefits for as long as you have a disability, until you reach retirement age.
Thank you. Last question because I know we're getting to our time here. I want to ask this question. We shared all of this information about the workplace. Are there any resources to share with the management team within our companies, especially when we're dealing with some of these side effects, we're dealing with financial challenges, we're dealing with all of these types of issues when we go back into the workplace, what resources can we share with our companies so they will be aware of individuals and what they experience with a breast cancer diagnosis?
Joanna L. Fawzy Morales, Esq.:
I think sharing anything about a cancer diagnosis with an employer who is willing to learn is useful. I think a lot of employers have preconceived notions about a cancer diagnosis. Maybe they've only had experience with someone with one type of cancer, so they assume that every person diagnosed with cancer is going to have the same experience. We know that's really not true with cancer. I think sharing information about your experience is helpful, but I also think that sometimes employees are in the position of having to educate employers about their responsibilities under the law, which is unfortunate, but if you want to get access to some of the protections, it might be useful to you. There is a resource called the Job Accommodation Network or JAN, it's a program of the US Department of Labor, and its whole purpose is to help employers and employees navigate accommodations.
If you've asked for an accommodation and your employer just says no, you can certainly call us at Triage Cancer. But it might be helpful to go back to the employer and say, I'm really confused about why I can't get access to an accommodation. I learned about this resource. Maybe we can sit down and call them together and they can hear it from a third party, so that you're not the one telling the employer that they don't know their responsibilities under the law, but a third party can be providing that information. They have all sorts of fact sheets and tools for employers to make sure that they're providing their employees with accommodations.
Awesome. Okay, one more question, and this is it, I promise. Can you touch upon information about what do we need to know about Medicaid or Medicare and how should we navigate that coverage?
Joanna L. Fawzy Morales, Esq.:
Those are two very different programs and I could probably spend 8 hours talking about each of them. They are both federal health insurance programs. Medicare is for individuals who are 65 and older and eligible for Social Security retirement benefits, or if you've been receiving SSDI for 2 years. Medicare coverage is broken down into different parts. You want to understand those parts of coverage because they have different costs, and you have some choices in how you get your Medicare coverage. I will say, we just did a 90-minute webinar on Medicare to break down all the things that you need to know related to Medicare, and that's recorded on our website at triagecancer.org/webinars.
Then with respect to Medicaid, that is a program that is available at the federal level for individuals with a low income and low resource level in most states. But it's state-specific, so understanding Medicaid coverage is specific to your state. We also have a recorded webinar on Medicaid if you want to learn more about Medicaid options. We also are about to release a new module on cancer finances on Medicare that is specific to state, so you can learn more about what's available in your state.
Joanna, Kiki, this has been a great conversation, and I believe that you've provided so many resources and we're definitely going to make sure that everyone gets access to the resources that you've shared tonight. There's so much more to learn about how we navigate this thing called breast cancer, financial toxicity, and trying to avoid it. If there's one thing that you would like for people to take away tonight, what would that be? Kiana, I'll start with you. One takeaway from tonight.
The thing I would like everyone to take away is really advocating for yourself. If you're not sure about something, ask the questions. I'll be the first to say, it could save you a lot of time and heartache. And really just be diligent about your own health, and what you want to happen, and in the treatment that you really want. So just be diligent and do your research.
Joanna L. Fawzy Morales, Esq.:
I would echo that. I would say help is out there, you just have to find it and make sure that you are finding it from reputable resources so that you can rely on that information.
Awesome. Thank you. Well, again, thank you so much Kiki for sharing your story, and thank you so much, Joanna, for sharing your expertise.
Session III: We are family: Navigating relationships
Tonight, we are going to hear from Stephanie Broadnax Broussard, a licensed clinical social worker, who is going to provide us with some tips and strategies on how to maintain or create healthy, supportive relationships. We are then going to be joined by three women who are going to share how their breast cancer diagnosis affected relationships in their lives. We would love to hear from all of you as well, so be sure to share with us in the chat and ask questions in the Q&A session. Stephanie Broadnax Broussard is a licensed clinical social worker and advanced certified hospice and palliative care social worker, and the director of palliative care and social work at Texas Oncology. You can read more about Stephanie on LBBC.org. Welcome, Stephanie.
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
Thank you so much, Tiah. I'm so glad to be here amongst you all. I'm just so excited that LBBC is offering this opportunity, and all the great partners. I think this is just so dynamic that we're able to come into this collective space and have a really honest conversation about navigating relationships. So, I hope that this is informative. You guys know more than I do about navigating this experience. What I hope to do is share some information that I've learned walking alongside those experiencing and living with cancer and then survivorship. I'm just really honored to be here.
I am going to dive in. I am one of those people who actually loves to see the chat moving. I'm also a southern girl. I grew up the granddaughter of a Baptist preacher, so I love a good Amen corner. If there's something that I'm saying that feels and resonates with you, I'd love to see that in the chat. Maybe there's something I'm saying that you're like, “Mmm, not so much girl, that's not it.” I'd also love to see that, too. I want this to be as fluid as we can and try to have a conversation as well. So, I'm going to dive in.
Okay, so, we are family, we're navigating relationships. What I want to do is set the tone for our conversation today, a little bit of our agenda. We're going to talk about how cancer affects family life, intimate relationships, and we're going to dive in and explore all the dynamics of those relationships.
I love a good quote, so we're going to start out with “when someone has cancer, the whole family, and everyone who loves them, does too.” I think one of the things that resonates with me with this quote is that as I support individuals and families, one of the things I see is that oftentimes we don't know what to do to serve those around us who are navigating cancer. We're going to talk about the perspective from relationships as the person living with cancer, but then also from the perspective about those people who are around – so maybe there are some here who are trying to support those with cancer, as well. We hope to hit it on both ends, and have a really good conversation.
All right, so, how does cancer affect the family? The reality is that it's a myriad of ways, and I'm not going to be able to hit every one of them today. I want to be really honest about that. Okay. I want to highlight something really quickly. One of the things I think that's really important when we talk about relationships is that the individual with cancer is the person that is living and navigating the disease. They are the person that cancer is happening to. They are the primary focus. The reality though, is also in addition to that, the people who love them are walking alongside them in that experience. That experience does impact the systems that they're a part of, whether that's their families, whether that's their intimate relationships, whether that is their friendships, because we all play roles and have responsibilities in the systems that we're a part of.
When we think about how cancer can affect our relationships and our family life, there is our emotional needs, there is a changing in our physical abilities, our needs, changing relationships and roles, the change of our responsibilities, competing priorities, changing future plans. We'll talk a little bit about grief and loss, but then also just exacerbating existing dynamics. A lot of times when we think about relationships, one of the things that we know to be true is if we add any kind of trauma or crisis, those dynamics that already exist are exacerbated. They are increased, they're challenged, they're stretched. Our relationships are also part of that. Just as the individual is navigating all this and their emotions, all the individual’s needs change, and how they relate to and see the world, sometimes their perspective is shifted, those relationships around us also are feeling that same impact.
We're going to try to separate the different areas and talk a little bit about some of the changes specifically. When we think about changing the roles, one of the things that I hear all the time is about “the Superwoman.” When we think about Black women specifically, I feel like as a population, we've been forced to wear it all. We have to wear the cape where we're wearing all the weight of our family. We're trying to be a caregiver and a caretaker. We're trying to shoulder the responsibility, whether it's a person that's a single parent, or all of our other roles. And oftentimes when navigating cancer, there's a change in the role because the culture shifts. And so every single slide that I share today, you will hear that their communication is key.
I think part of what I see when supporting families is that oftentimes, we're trying to hold things so that we don't shift our emotional needs or physical needs onto someone else. Part of that is because we feel like sometimes people can't handle it. They can't shoulder the weight of it all. But then oftentimes it looks like we don't know how to release and relinquish and find the safety and security, because maybe someone hasn't shown up in that way for us before. We don't know that we can trust that people can handle the things that we carry. And so, the idea that we have to be Superwoman is a myth, right? We’re humans having human experiences. Anytime I can challenge that notion that we have to be a Superwoman, right? We can't. The reality is that we're humans with emotions and feelings.
If we don't give up the cape, then we not only do harm to ourselves, but the people around us as well. Because we can't do it all. Sometimes crisis will push us into a space where we have to figure out how to navigate differently. One of the things that I want to talk about is the shift from caregiver to care recipient. Oftentimes as the person who usually is primary caregiver in a lot of our families, what can happen is that now there's a need that we have where someone has to provide care for us, or has to support us. What do you do when there's that shift? If we don't properly communicate or set up the dynamic where people know how to serve us, then we can sometimes have people in all in the places we don't want them.
Sometimes people will insert themselves in the spaces that they think are the most helpful, but really may not be what we need. I'm going to talk a little bit later about what does it look like for people to operate in our love languages? But when that shift happens from caregiver to care recipient, without adequate conversation and communication, we may create gaps in our own care needs because we don't know how to tell people how to serve us, how to show up for us. And sometimes in these situations, I've worked with people and they don't really know what they need, right? They just know that there's something – I can't do it all, but I don't know what to ask for. When that shift happens from caregiver to care recipient, it can often shake the dynamics of a family. Think about if you went from being the mom who prepared all the meals and washed the clothes and took the kids everywhere that they needed to go to, now having some fatigue or challenges that impact your ability to do those, some of those things. If we don't communicate it can create gaps. And so, we're going to talk a little bit about how do you do that when those changes happen in the roles, how do we communicate to make sure those things don't happen? I don't want to pick on y'all, I don't want y'all to feel like I'm bullying today, but another thing is about accepting help. I don't know anyone outside of Black women who is so resistant to accepting help at times. I want to challenge the notion that we can't accept help. We may not know what the help is, and people may not do the things that we do for them as well as we do them, or how we would do them, but doesn't mean that they can't do them.
It also means that we have to, sometimes, just sit back and accept that help. I think it can be difficult when navigating something that's so outside of your control, right? With cancer, there isn't a lot of control that we have in regards to what the disease is doing. And so, part of what I want to do is hopefully empower you guys today to see those spaces where there's opportunity for controlling your relationships, to really dive in. Someone mentioned, I saw in the chat, relationships, whether it's your family, your significant other, your care team, there is power in that control and leaning in. Sometimes that means speaking up and saying, you know what? There's this thing I need. I'm not sure how to get it done. Can you help me? Or, I'm not sure what I need. I just know I can't do it all.
The changing the roles can look like redefining roles. Does that mean that you are no longer the primary caregiver in your home? Is there someone else who can take on those things? Or does that mean that if you are the person who always cooks, does that mean you can shift some of those responsibilities to be now the meal prepper or planner and someone else prepares the meals? Sometimes we are so tied to our roles as mom, or wife, or daughter, or sister, or champion, or leader, or whatever roles we assume on the million things that we do, that we identify what we serve as who we are. I want to challenge you guys to think, sometimes that can create different layers and complex grief, because those roles are really important. They're really valuable, but they're not who you are.
And so, sometimes we'll hold onto those roles so tightly as we navigate the cancer experience. And it really creates a dynamic in our family that can be difficult for the roles around us to try to navigate. Not only do we have resentment, because we have needs going unmet, we're disappointed and frustrated because why aren't you showing up for us in the way that, that you should? But then they don't know, because the roles have shifted and no one told them. That's why it's really important to also communicate feelings about changes. Sometimes changes are happening – and we talked a little bit about control. I don't want all the changes to be happening to you. I think there are some things that we can communicate and say, “You know what, when you decided to help me with this, that didn't feel good, or it felt like you were making this decision for me, and I want us to make decisions together.”
Let's talk about what these things look like. This is still my house, these are still my children, or mom, dad, I'm an adult. I need your support, but here's how I'd like to receive that. When the changes are happening, don't feel like you're going to alienate yourself, or reject the help, or alienate the people who are trying to serve you because you speak up for yourself. I think sometimes when we have help that's coming, we feel like in order to receive it and be grateful, that means we have to take it as it comes. I don't think that's the case. I think there are opportunities to communicate, in a really healthy way, and communicate your needs, but also the desires and where you need that support and get that. But that also means you have to share the desires.
For example, if there's spaces that you need help and you've communicated about the changes and the feelings, you want to make sure that you're sharing what you hope to see, what you would like to have happen, or what you would like to experience within the context of your family and your roles. We can sometimes almost talk ourselves out of circumstances because we have a vision. I think we talk a lot about expectations, right? I think social media and society has created this picture of what things look like and all those kinds of things. But the reality is that it's okay for us to have desires. If we don't share what those are, people can't meet them. It's like it's setting them up for failure automatically. And then we're disappointed because we haven't told them, right? We haven't shared those things.
The last thing is remaining flexible, right? I know that people talk a lot about taking things as they come and rolling with the punches and it's important to see things as they are. But also, it's important to be flexible. Not necessarily about what's important to you, but how people show up for you. People can't love us outside their capacity. That's the first thing, being open to where and how they show up. But also, if people can't serve you and love you the way that you need, being okay with boundaries, too. I think sometimes we feel like we can't do both. Two things can be true. We can be extremely grateful for the support and love that people are showing us, but also know that something doesn't fit well with your boundaries and expectations and be okay with communicating that. Most importantly, if you didn't hear anything else from this section: get rid of your cape. The capes do not exist. You may have superpowers, but you are not a Superwoman, right? You may give the illusion and appearance that you're a superhero because of how you carry all that you carry, but you are a human and you deserve love, compassion, and support as you navigate your human experience.
We talked about how the roles change, but what about the responsibilities? Because the two are so interconnected, and as I mentioned, communication is key. Just because cancer happened doesn't mean life around you or all the things that you're responsible for stops. So, what do you do? The first thing I would really encourage you to do is, number one, communicate with the people in your support system. The second thing is relinquish control. And I know you're like, “Stephanie, you just said like, tap in, get in control, control what you can.” But when I talk about relinquishing control in regards to responsibilities, I really mean that your way is the only way, right? That the way you cook that baked chicken with the seasoning and all that first is the only way these children are going to get fed, or that they have to have these vegetables, or the way you organize, or the way you fold the clothes, or all those things.
Just because it's your way doesn't mean it's the only way. When I say relinquish control, I mean that, yes, have your expectations, yes, have your boundaries, but some of the things that we're in spaces where we're going to have to shift some of those responsibilities, be okay with it being done and not just how you see it. And then also when we think about shifting responsibilities, be willing to teach. Sometimes it looks like we have to do all those things and there's no one else to do the things that we need to have done. But maybe there's an opportunity for you to teach people how to serve you. Teach people how to serve and do some of the things that you do. For example, if you are the person that cooks, once again in your family, teach them.
Maybe pull up a chair. If you can't stand long, pull up a chair and walk them through it. Or do some organization as far as meal prep and talk them through, talk through what that looks like or help to make a list. Let people serve in a way that's possible for them, but also within your abilities, and be willing to shuffle today. One of the things in responsibilities is, and as I mentioned about roles, is that we are so tied to what they bring to our family. There is no other you, what you do matters. And so, especially in navigating cancer, one of the things I've heard from my patients over and over again is “I don't want my family to get used to me not doing this. I think it's important that I do this. I don't know how long I'll be able to do it, so I want to make sure that I do it, and I do it this way, and that they know this happens.”
But the reality is that we could shuffle the deck a little bit sometimes to those roles and still maintain the love and joy that's provided in some of those things that we do. That may look like enlisting a service to come and wash the cars, or using a laundry system. It may look like letting your husband cook if he's not a good cook. It may look like shuffling the deck and teaching your kids some new skills and letting them tap in just a little bit more. It may look like letting someone else help the kids with homework. It may look like shuffling the deck in those roles and responsibilities that are really important to you.
Remember that just because you change your role doesn't mean it eliminates the relationship. Sometimes we think that, because it is so significant that if I shift some of my responsibility, then it also means that I am shifting and trying to remove myself from the dynamics of the relationship or how important it is. And that's just not true. We have to challenge those negative narratives that surface out of fear or concern where it's like, “well, if I don't do this, then will they know I love them?” Because so much of what we do is an act of love as women, right? How we serve our family is an act of love. How we prepare those meals is an act of love. Even the smallest things, laundry or doing hair or whatever, all of it's an act of love.
And so, sometimes, we can think that if we stop those things or shift the deck, then does that mean that they don't feel the love from me? I'm here to just throw that to hell in a hand basket, really to say, the reality is, no matter what you do with your roles, no matter what you do to shift the responsibilities, it does not negate the value that you bring to your family and your relationships. Okay? Be willing to learn, to navigate limitations. Sometimes because we have to be so strong, we don't want to say that we have some weaknesses or that we're having some limitations or we're having some challenges. That communication and being willing to speak up can sometimes really help us and help those around us know how to better serve.
One of the things I like to talk about in this area, when we talk about responsibilities, because sometimes there aren't places to shift them, right? Sometimes if you are holding all the load and there isn't a place to put it down. It could feel like, well, what do I do now? And that's where I want to encourage leaning in and really looking in your health provider about where support networks are, leaning into communities like LBBC and all the great partners here today. Because sometimes that means you have to create a community if it doesn't already exist for you. Okay?
And what about the changes in emotional needs? This is where I'm going to talk real, real tough, y'all. I'm going to start to walk a little heavy. Because I think part of us as a community, and I'm going to speak as a Black woman, I think part of what happens in our community is that when we think about who we are as Superwoman and just in generational and historical context, there hasn't been a lot of room for our emotions, right? The reality is, that when navigating cancer, emotional needs vary. They change often, not just yours, but also the people in your system. So, sometimes, if we navigate emotions and circumstances, how we've always done them, then it doesn't work, right? People perceive us differently. They think we are, we are not, we don't care as much, or they think we care too much. We're over-invested.
One of the things we need to do is make sure that we communicate those changes, but also make sure that we hone in and look in and be introspective. Sometimes our emotions are all over the place, and so we're not sure what we feel, we can't give it a name. But it's really important that we try to make sure that we're tapping into whether it's support systems, a therapist, a counselor, a social worker, someone to really help us figure that out if we're having some trouble, okay? Lean in to support groups, really have somebody that you could talk to and say, “Hey, I'm feeling kind of up and down or having these changes, help me process that.” Okay? Depression, anxiety, hopelessness, fear, and anger are valid and they are real and they are normal.
I actually just spoke to a woman earlier this week and she was telling me how everybody's acting like because she's just entered into survivorship, that magically everything changes. That no one in her world has been able to relate to the fact that yes, she's grateful, but she didn't get swept up with the sea of relief. The people in our life are just difficult to be around because they’re all expecting everything to magically change. So, one of the things that I want to say is, all the feelings are valid and they all have a place. We talk a lot about “hope” and about “pursuit”… I get kind of upset with some of the lingo used in regards to cancer and the cancer journey and experience, “fighting,” and those kinds of things.
I think regardless of what lingo you choose to describe it, the reality is that even though all the feelings are valid, some of them, it's not a safe place to, to rest our hat in. So what do we do to make sure that we have the support we need to be able to go the distance and navigate? Okay? If we're struggling with depression and anxiety, or even hopelessness, it's important that we get some help, right? When we are Black women, we don't want to listen. We don't want to tell anybody that we're sad, especially when we add the elements like “faith” and “believe” and all this, and have to show up for our family. We feel like we have to walk around with a smile and it's all well, and sometimes it's not. Sometimes it sucks and it's trash. So, we have to be able to look at it and say, “Okay, here's where I am today.” These are my feelings. How do I get support for that?
We have to be aware and not resistant to medication intervention if we need it. We can't neglect our own feelings for the sake of everyone else in our system. They have a place and they're really important, and if we neglect them, they'll show up in other ways. It's also important to acknowledge that when we're in a family system, that everybody's not going to arrive to the same emotional place at the same time. Where you may be processing it at a place where you've reached your resolve with some of the things about your experience, doesn't mean your partner will at the same time, or vice versa, or your children, or your parents. So, it's also important that just as much as they are there for you and they have to be respectful of where you are in your emotional space, I would really encourage, individuals to think about, how do I see them? And not try to carry the weight of their emotions and where they are, but acknowledge that there is space for their emotions. If you don't have space, make sure they can get to somebody else who can help hold that space for them, as well.
And then the reality is, sometimes you can't name the emotion. You feel all this stuff and you can't put a name to it. Sometimes what comes up, because it's easy, is anger or that frustration or just irritability, because those are easy emotions that come up to the surface. But when we're having communication and we're trying to really navigate our relationships, it's important to name the emotion so that people can better understand us. And sometimes we just can't. I like to go back to that old school feeling wheel. I know it's really elementary, it's a children's tool, but you can always Google a feelings wheel. And sometimes I'll tell people to start with what you know. If you're feeling angry, start angry and walk your way into all the different emotions that are really there. Sometimes what's on the surface is anger, but really what it is, is that I'm afraid or I'm resentful, or I'm worried, or I feel abandoned, or I'm disappointed.
What is the real thing? It's different for my partner to hear me say, “I'm really disappointed that you haven't shown up for me in the way that I thought you had or thought you would,” versus “You get on my nerves, da-da-da-da-da,” and just angry, because that's what's easier to pour out. Naming that emotion can really help navigate the situations better. And then, just because I think it's important to say, “numb” is a feeling, and I think sometimes being numb is a means of survival, right? Where there's just so many things coming, right? There are so many changes, there's so many emotions, you're trying to figure out what to do and find the best care and navigate all that, and be concerned about everybody else. So, sometimes, as an act of survival, our brains will kind of go numb.
I want to validate that. There are people who feel all the things and there are some people who are just like, I just have to keep moving. If I stop to feel too much, then I'm not sure what'll happen. And so, although I don't encourage avoidance, I think we have to lean in and deal with our emotions. The reality is that when we're numb, that is an emotion. It's saying that we're overstimulated. It’s that we can't take it in. Most importantly, all feelings are valid.
Because intimate relationships are part of relationships in our systems, I think it's really important to also talk about the nitty-gritty. There are changes in sexual dynamics, what intimacy looks like, because if you add the physical changes, that impacts relationships. So, once again, if you haven't noticed, communication is key. There's some really great resources when you think about sexuality and intimacy, to talk about whether it's other cores or different things that may be available to help to preserve that sexual intimacy. I love The Five Love Languages. It is a great book. One of the support groups we have at Texas Oncology, we're part of a study where we've adapted the five love languages and added it to the cancer experience. Because a lot of times what happens is that in intimate relationships, our partner will think that they're loving us the best way that they can, right? And we don't necessarily feel it that way because maybe our needs have shifted. If I'm Physical Touching, that's how I perceive love, but I'm always tired and I don't want it, I don't feel sexy, or those kinds of things, what happens to that dynamic? Do I feel the love that I need? How do I make the pivots necessary to feel that love? Or maybe I'm Acts of Service, so how I show my love is to serve, but also how I feel loved, it's a service. But I also am dealing with not wanting to feel helpless, not accepting help and all those different dynamics. It can really impact our intimate relationship and how I feel loved and supported, and ultimately my perception of my quality of life. It's really important to think about, number one, how do I receive love? What does that look like for me?
Sometimes we don't know ourselves. Doing those quizzes, the Five Love Languages assessments, can really help us. When we think about sexuality and intimacy, they are actually two different things, right? Sexuality is the act of sexual engagement, and all the different things that come with that, and the pleasure that's related. But intimacy is the act of connection. Feeling, seeing, feeling heard and valued in a particular way. Intimacy can be achieved even if sexuality and sexual, physical connection isn't maintained. But that requires communication.
I also want to say that it is a medical issue. If your healthcare provider has not spoken to you about your challenges with sexuality, ask them. When it comes to intimacy, there are people, like me, who love to support individuals and families who are trying to navigate illnesses, but also preserve all things that are important to them. I believe intimacy is a quality-of-life issue. It's really important. We have to figure out how to preserve that, how to be really intentional about maintaining those connections. Okay?
And I'd be remiss if I didn't talk about the grief that comes with relationships and families, because we're often looking forward. And although I hate it when people say it, I'm going to say it: the pursuit of the normal doesn't exist. Cancer comes in, it's a bomb. It blows things up. Like, normal where? It's not there. We can grieve what we thought was coming. We can grieve life as we thought it would be, what we thought our season would look like at this age, or what we thought we'd be, would we would be experiencing. As a result, sometimes there's detachment, and there's even resentment and challenges in our family systems because they aren't sure how to navigate their own grief related to our illness, let alone us carrying our own. And then when we think about future plans, sometimes people…I'm seeing a beautiful young lady right now who is in survivorship but is terrified to engage in an intimate relationship, because she doesn't want to set them up for disappointment out of fear of recurrence and that recurrence anxiety.
So, it'll really impact how we navigate those relationships and dynamics if we don't really communicate and talk about them, and try to process them. It's really important to reevaluate and reprioritize. One of the biggest gifts that I have gotten in my life, from serving those who are navigating serious illnesses, is perspective. One of my favorite quotes is, “I hope that I have perspective without tragedy or trauma.” The reality is, when navigating [cancer], it's helpful to reevaluate and reprioritize what's important to you. Are you grieving something that is no longer a priority? Because sometimes we'll get stuck in looking ahead and what should have been, and what I thought it would be. And when the dust settles, and we're processing, you're like, “Oh, I don't do that anymore anyway. That's really not important to me anyway.” So, it's really important to sit down and step outside a little bit and reevaluate what's important, what are your priorities, what is now ahead, and then reprioritize those things.
I saw a lot of questions, so I'm going to make a little bit of a pivot to make sure that I can answer some of those. And then I'll go back to some areas that I wanted to take a little bit of a deeper dive.
One of the questions that we got was “How do you deal with your kids now treating you like you're the kid instead of the parent?”
Role reversal is a real thing. I think when we think about navigating relationships, that role reversal happens often because there is concern about your care and your needs. Once again, I'm always going to say start with communication. Start with communication about how you feel about that. But also, I think it sounds like you've raised these kids to be aware and be supportive, and so maybe there's a misinterpretation of what they're trying to do. Maybe express it in a way such as, “I feel this when you do this,” or “I'm so grateful that you guys care and you're concerned about me, but I feel this when you do this,” or “It's really important to me that I'm able to do this, and when you do this, it makes me feel this way.” So, you express the gratitude for their concern, but it's really important to be able to call it out and say what it is.
I think when we think about our relationship, especially as, “I am the child of a parent who requires some assistance,” but she's completely independent, does everything, we're not prepared to step into the role of caregiver. There could be some uncertainty and discomfort. So, you want to make sure that communication is there to reinforce that that relationship dynamic. And also, when you ask for support and you don't get it, even if you've asked for it, the reality is that sometimes people can only love us, support us in the capacity they have. It's really important that, if you convey your expectations and you really share what you need, and people still don't show up for you in that way, that you look for other support.
I'm a realist. I would love to say that people are going to always show up the way you have for them, or give you what you deserve, but that's not always the case. If that support doesn't show up the way you need it, there are a great organizations, like this one and the ones that are sponsoring tonight, who can help you foster community and support, and cultivate relationships where it's necessary. We actually have a support group at our practice and over the ice storms that we had, two of our ladies who didn't have any family connected and were each other's support system from that bond that they created in that support group. I’m not saying it'll always happen like that, but you have to be willing to seek out support if the people you love don't show up for you the way they you need them to.
It's okay to seek out, because if not, you'll be disappointed if you've conveyed and they just can't show up for you in that way. The idea is that sometimes disappointment will happen, because just as you are navigating this experience, the people who are navigating alongside you may need some support in figuring out what that looks like for them. The disappointment is real. You’re humans having a human experience, and especially if it's a new one, people may not know what to do and how to be what you need them to be. I can't say enough about communicating what it is that you need them to be and being very specific. I think in general, in relationships, people will be like, “Well, you know me, you should know how to love me. I shouldn't have to tell you how to love me. I shouldn't have to tell you just common sense how to take care of me, or what that looks like.” But I would challenge that and encourage everybody – don't make any assumptions that people get it. Sometimes that means saying, you know what? It would be really important for me that when I'm talking to you, you look at me and just give me your undivided attention, because that's something that's really important to me right now, time is just really important. Those are things that are simple, but sometimes it means just pulling back and explaining those things.
Something else that's here is about the Love Languages. In general, what we did was we took the principles of the Five Love Languages and then we created a curriculum for a study where we've modified all those perspectives for the cancer experience. So, for example, when you are where there's barriers in acting out some of those love languages, we've given some suggestions and application. And the group is for partners. The group breaks up into two different groups where the partners have a safe space to talk about their needs and challenges, and then those living with cancer also have the ability to do that as well.
Awesome. Thank you so much, Stephanie. You know, I was in the “back room” is what I like to call it. Just saying to myself, “Gosh, I feel like I'm at church. She is just preaching to us.” Good information that we truly, truly need, you know? I want to say thank you so much for dropping a lot of nuggets. We had a lot of questions, there was a lot going on in the chat. A lot of hands raised and prayer hands and all kind things. Thank you.
So, let's jump right in. I’ll bring our panel on. I would like to screen Latoya, Thomasina, and Miss Marilyn.
Stephanie, clearly there's a lot going on during a breast cancer diagnosis, and the conversation with our panelists is really going to help us dive in.
Each of them has their own story and experience about how a breast cancer diagnosis impacted the relationships in their lives. I want to take a moment for us to hear from each one of our panelists. And, Latoya, I want to start with you. You were diagnosed with early-stage breast cancer in 2021. You're married, you have three children, three young, beautiful children, and you're still in treatment. Can you talk to us a little bit about how it has impacted your relationship, in particular, with your husband?
Thank you for having me. I appreciate Living Beyond Breast Cancer for having me here and for wanting to have my insight, as well. Having breast cancer and still being in active treatment in my thirties has been something I never imagined. There are so many things that I identify with that Stephanie said. So many role reversals and it's difficult for me to ask for help. I just don't ask for help. So that really resonated with me. And the trauma that my children experienced with losing my hair, losing my breast, seeing me ill, falling out. It's just been so many different layers to it, and having to care to their needs, as well, because when I was diagnosed, they were ages one, four, and six, and now they're just three, five and seven. So, they're still babies.
In addition to that, the hard thing is watching your husband go through his emotions and he's trying to be Superman and hide his feelings, and crying in a shower. You secretly see him being frightened and seeing that in him, and you're trying to console yourself, but you're also trying to console your husband, as well. More recently what I'm experiencing, this year, after going through chemo and the bilateral mastectomy and radiation, is the body dysmorphia and how that affects me psychologically. I didn't know that. For me, that has been like the role reversal. Body dysmorphia has been the most difficult thing for me with the cancer. It wasn't the chemo, the psychological aspects of this cancer, in my opinion, it’s more of psychological diagnosis than it is just physical.
And so, dealing with that, not wanting to look in the mirror after a mastectomy, because I had to stay flat – because it was advised, because I had to go through radiation and there were concerns about, contractions, expanders, and all that. So, that interim period before being flat, I'm still in that process, and just seeing your body, just not liking your body, not liking the way you look and not wanting your husband to touch you, because you don't feel sexy, you don't feel beautiful, you don't feel glamorous, it interferes with our intimacy. I will say that I am very grateful for my husband. I'm not trying to put him on the pedestal, but I've heard so many different stories and horror stories about women who are going through this and their husband divorced them, or were not being supportive.
My husband has been my rock. He tries to love me up when I feel ugly, you know? I don't look pretty and he's still supportive or touching me and he literally had to tell me, “Why are you not letting me touch you?” And that resonated and I still push him away in certain instances. So, it just affects so much. It affects so much. I can go on and on, so I don't want to take too much time. But it's been multilayered, yeah, for sure.
Ans this is a lot to unpack, and I think it doesn't matter whether you're married, you're single, you have a partner – we all for the most part have those experiences, and as we go through this journey, there are different components, whether it's losing your hair and your nails turning colors, or whatever the case may be in terms of the side effects, and even post-treatment, we all are dealing with those same challenges. I remember my niece, when I lost my hair, she was about three or four years old and she told me I looked like Frankenstein. Of course, I had to laugh, but she did not like seeing me bald because it scared her.
So, I want to go to you, Thomasina. You've been living with metastatic breast cancer since 2005. And during this time, I would like to hear about your and relationships and how it has been, especially from your first diagnosis and then when you were diagnosed again. How was that different? If you can just share a little bit with us about that?
Thank you for having me. I would say that the difference between the first diagnosis and the second one is that I was so afraid. In the beginning I had no information about anything, didn't know what was going on. And then by the time it came the second time I was like, “Whatever, as long as you come back, I'm going to keep fighting you.” And I know that it's a possibility it can come back, but I'm not afraid. If it does come back, I'm ready to do what I have to do. But as far as relationships, the role reversals did, happen with my two daughters, and my grandsons, as well, where they had to be the caretaker pretty much because the chemo was horrible, of course, as everyone says.
I really needed them to help me and it was hard for me to let them. I was also still working. But then, after 11 years, I had to leave my job. It's difficult to watch them go through everything, and to see your young…I think my youngest one was 15 at the time. I didn't think I was going to see her graduate. And to see her thinking that her mom was going to pass away was, you know…she was with me the most because she was still home. Then my grandsons didn't understand why I was sick because they were young. Even the youngest one helped me with things, you know, put the blanket on me, whatever, but he didn't understand what was going on. It's not easy. It's very difficult. I had one diagnosis and two recurrences, so, I'm not going to say I'm used to it, but I know that it can always come back. I'm just pretty much prepared. I hope it doesn't, but because I'm still living with it. I hope I don't have any more recurrences, but I'm pretty much used to that.
Thank you for sharing. Miss Marilyn, I want to talk to you about your diagnosis. You were diagnosed with breast cancer in 2021, while still grieving the loss of your husband of 41 years to cancer just a few years prior, in 2019. Can you talk to us a little bit about what it was like for you? Latoya mentioned that her husband was her rock. What was that like for you, not having your rock there to lean on when you were going through your treatment?
Marilyn Drew Thomas, MA:
Well, thank you, Tiah, for this invitation. And Stephanie, you were talking to me personally. You just hit all of these hot points. My breast cancer diagnosis was just a continuum of grief. I've been in grief for several years, and when my husband was diagnosed, it was sudden. It was quick. And I stayed numb, that was my survival technique. Even after he transitioned and I retired and moved back home to Washington, I stayed numb. Yet I was continuing to operate. I found that my rock has been my adult children. I am really blessed to have awesome children. My two sons and my daughter-in-love. They are the rock, and we rallied around each other. Once I was able to share that with them, we did what we needed to do and we continued to move forward.
On top of that, I didn't realize until Tiah and I were talking that I was in a triple-dose of grief. My husband gone, this pandemic that was rocking the world and everybody was living in pods and isolation, and then this cancer diagnosis. I know that I was blessed because I went back to the doctor I had before I moved away. And then I moved back here, and I went back to my doctor. My mother had breast cancer, and now I realize I have a sister who had breast cancer, also. So, when I got the letter from her saying, “It's time for your mammogram,” I said, well, I just had an MRI, this thing can wait. And she said, “No, you need to stay on point.” And remember, this is the time when people were canceling appointments and basic procedures. I went in and it was the mammogram that really found it. There was no lump, nothing. It was just the mammogram that picked it up.
Yeah. Thank you for sharing. You know, it's really is interesting that you mentioned you had two sons helping you to navigate your breast cancer care and being your “rock,” as you called it. Miss Thomasina, she had two daughters, so I'm sure there were different perspectives; and then we look at Latoya, and she had little kids. So, just thinking about just how that potentially be different with those different individuals.
Stephanie, I'd love to bring you in and get a little bit of insight from you. When you heard Miss. Marilyn talk, she mentioned being numb, and that's how she was able to get through her breast cancer journey. Can you talk to us just a little bit about the impact that being numb can have on us in these kinds of relationships?
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
Absolutely. I think being numb – it's probably more common than we think. To some degree people will say, “well, it's avoidance, it's the now,” or those kinds of things. The reality is that if we look chemically, the mind can do things to protect us. In situations, especially like Miss. Marylin’s, where we're dealing with complex grief – I would probably challenge that some of those layers are deeper than we really know because it shifts the whole dynamic and that support system. And so, out of survival, sometimes we'll go numb to senses. Think about if you put your hand on a hot stove, right? When that heals, the next time you touch, there's a scab over the initial healing surface. So, it's really not as hot to the touch each time because our body is helping to protect us from what's there, the next time.
In order for us to get back to that real layer of skin, that [scab] has to fall off. The same thing with our emotions and our mental wellbeing. Sometimes out of protection, our brain will do these coverings to try to keep us from our senses being so sensitive to the stimuli. And that's what happens when we're numb. Sometimes that could be done intentionally, right? We think we're doing it intentionally, but we're probably not. It's about what happens so that we don't stay there. Because numbness can be very helpful. Not that it's something we want to do, we don't want to practice avoidance. I don't think that's healthy. But sometimes if our brain is helping to do that, sometimes that may mean it's what's necessary for us to survive and push through.
It's about what we do once we acknowledge it, right? We want to be present, and sometimes that means the awareness of those difficult emotions can help us navigate and push through a little bit differently. I think I heard a lot about, even with having children and the impact, in general, of having those children present and that support from children, the impact on our parental relationship is really different when it comes to cancer, specifically because of what it means to explore the idea of mortality. For children, especially young children, one of the things that's really important is about that communication, because you want to be able to communicate with them in a way that's age appropriate where they can digest that information. I see families all the time where they're like, well, we don't want the kids to know.
They know. They just don't know what it is. They know they feel something, they're able to see it. That's why, even in adult children, we see that role reversal, because part of what's there is that dynamic in trying to connect and feel that space. There's a biological connection there that allows them to feel when you're uneasy, when there's the uncertainty. That's why we see that role reversal happen. Sometimes where they're like, “I'm not your mom. I'm the mom. You don't tell me what to do.” And that can happen. Sometimes it's organic and sometimes you see some personalities that lend themselves to it a little bit more. That can really be a difficult space to be, if we don't call it out. And also, about navigating emotions: If we don't model what it looks like to hold our emotions and give it space, we teach our children that their emotions don't have space either.
Wow. Wow. So, speaking of communication to our families and dealing with those emotions, Latoya, how did you have that conversation with your children, if you don't mind sharing? I know we talked a lot about your husband, but how were you able to have that conversation with your kids and talk to them about mommy being diagnosed with breast cancer, or being sick, or whatever way you presented it to your children?
To be honest, there wasn't a conversation, because like I said, I had just recently stopped breastfeeding my baby. I had a one-year-old, a four-year-old and a six-year-old. They don't know what cancer is. They don't know what that means, you know? When I initially started going to chemo and after that second treatment, my hair started falling off. That was just so traumatic for them. I told them, mommy is sick. I used the word “cancer,” but do they know what that means? No. So, I got two books. They're from two black female authors and specifically talk about breast cancer.
We would read the books, and then one of the books had a coloring book in the end. My daughter, my oldest, she likes to write, so I would see little things that she would enter into her journal. But their initial shock, their initial wake-up call that mommy was sick, was after my first treatment and I came home and my husband gave me those Neupogen injections that we all hate. I passed out and the ambulance came to my house and I ended up two days in the hospital.
I wish they were a little bit older, sometimes, but they were babies. They didn't know what cancer means. So, I didn't have that conversation with them, to be honest. It was just “mommy's sick.” And every time that I leave the house, they're like, “Oh, mommy's going to the doctor.” I can be going to the store now, but if I leave the house, “Oh, mommy's going to the doctor.” That's how much I was going to the doctor's appointments. They associate me leaving home with going to the doctor. It's just difficult. I'm still dealing with the effects of that.
We had a question that came in the chat. Someone was interested in the books that read to your children?
Oh, yeah. One of them is by Marquita Goodluck, BK’s Mommy has Breast Cancer. She also has her own radiation cream. You can Google it. She's a breasty I met. She sent me a radiation cream and I did not burn one time during my whole treatment, like a complete unicorn.
Awesome. Living Beyond Breast Cancer has a program, Reading for Reassurance. They have books for children to help you have the conversation with your children. Those books are at no cost, so be sure to tap into their program. Stephanie, did you want to chime in?
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
Yeah, I just was going to say that I think Latoya, you said you didn't have a conversation, but you actually did. You said “mommy's sick,” right? That’s an age-appropriate way for them to understand what you're experiencing.
I think the other thing is about being proactive in communication with the kiddos, so that they don't have that fear. Because for example, especially if they were there when you passed out and they had that experience, they may walk with that fear and not be able to communicate it because of their age. If you call it out and say, “When mommy leaves, mommy's going to ABC” so that they're aware that this means mommy's coming back, to walk through that with them. I just wanted to acknowledge that you had a conversation. It may not have said that “I have cancer,” but saying “I'm sick” in a way that they can understand, and maybe they can expect, maybe mommy might lose her hair and sometimes mommy may feel really tired, but in a way that they can understand.
Yeah. I wish I could go back and do that, prepare them, but I'll be honest with you, I was still processing it myself. You know, you go from being the caregiver and the PA in the emergency room taking care of patients, and then all of a sudden now you're the one who is being cared for. The role reversal, for me, and just the processing of it…I worked up until the day before I started chemo with a port, in the ER. It just wouldn't hit me. I was like, “No.” I was in denial for a long time.
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
But you also give yourself the grace that you did the best at what you knew to do, with those circumstances, for those babies. And they got what they needed at the time. There's time to move forward. But you did the best that you knew to do.
Yeah, you're right. And that's the reason why these conversations are important, so that if someone else is in my situation, then they can mentally prepare their young children in the age-appropriate conversation.
Since you all were talking about role reversal, I want to pivot just a little bit. Stephanie talked a little bit about us wearing our cape, and when we think about Black women and who we are in our families and our position. Many of us are familiar with the idea of being a strong Black woman. Stephanie, if you can, talk a little bit more about this dynamic and why it can actually be harmful to us as Black women, and how it impacts the relationships.
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
Listen, if there's one thing I can't stand, it’s that strong Black woman narrative and the Superwoman narrative. Because it does not create a space for us in a model vulnerability, so we oftentimes are in spaces where we are used to being the load bearer. We have the fear that if I put this load down, is there anyone that's capable of picking it up? And in turn, what that does, is it doesn't allow the people around us the opportunity to even try. Because we're juggling, we're carrying it at all. Then we create a narrative where they can't show up for us, even if they wanted to, because we won't even give them the opportunity. The idea of holding all of that emotional weight, and the physical weight and strain, isn't good for us.
Let's just be honest. It's not healthy. We deserve the grace. We deserve the safe spaces. We deserve the opportunity to be vulnerable and have our tears and to feel all of our feelings – also our joy and our hope. We deserve all those spaces. But if we walk around like superheroes, society, number one, isn't going to see us and create the space. We have to carve it out for ourselves and say, we deserve the privilege of being vulnerable. We have to take that back, because it teaches people around us and even those who love us, that we don't need that space. So, they don't know. I'm really committed to the generation behind me learning that, hey, sis, yes, you can carry the load and carry a lot, but that doesn't mean you have to. Yes, you can probably navigate it alone. Doesn't mean you have to. The sisterhood, the friendship, the communities like being able to…we are a people who thrive in community. So why does it that mean that we get to be in the community, but not feel the support and the love of it? I don't think that makes sense to me. It's really important for us to navigate and model vulnerability. There is power in our vulnerability, but we have to choose to lean into that. It's absolutely the healthiest thing for us.
I remember seeing a TikTok and there was a young Black lady who just went on a rant. I don't know if anyone else saw it, but she was like, I am vulnerable, calm me, I'm precious, I'm not strong. Like you say: strong, right? When people say “You're a strong Black woman,” and she's like, “I have no other choice. It's the only thing that I can be.” So, I want to ask Thomasina and Miss. Marilyn, have you all had those experiences of being a strong woman? And what has that been like for you?
I've always been like that since I was young because I have three younger siblings that I always took care of. So that was always in me to take care of everybody. If I can't do it, then I think there's something wrong because I feel like there's nothing I can do.
When I was working, I would take one day off, go to chemo the next day, and then go back to work the next day. And I kept doing this for 11 years. I don't even understand how I did that. But yeah, that's me being stubborn. I accepted some help, but I should have accepted more. I think I was telling myself that I'm okay, because once I felt like I can’t go to work after I go to chemo, then something's wrong. So, I constantly kept doing that to myself and I made it out by the grace of God and my doctors and my family and myself. I'm pretty stubborn when it comes to getting help and seeking help, sometimes, but I've learned to stop doing that. I'm hoping that a lot of people that need the help would reach out to people, even if they feel like they don't want to. They probably need it and they probably think they don't.
How about you Miss Marilyn? Does this resonate with you, being the strong Black woman?
Marilyn Drew Thomas, MA:
Well, my definition of being a strong Black woman is being in tune to yourself. It is okay to cry. It's okay to be angry, angry with God. It's okay to be angry with yourself and to express yourself. That has always been so important to me. Being straight up, this is how it is, and you don't have an option. You have to get up. You had to go to work, you have to continue to do laundry and pay bills, you have to do all of those things. And it is okay to get help and to say, I don't have it together. And that's what being numb came as for me.
Marilyn Drew Thomas, MA:
It works for me.
Yeah. So, I want to go ahead and answer some of the questions. I'm seeing the chat is truly, truly on fire. Same thing for the Q&A. I want to just pivot to some of those questions that our audience has for us.
You know, we talk about this cape, right? And I have to go back to this cape, but oftentimes we wear our cape because we have so many disappointments. We get let down, and it hurts. So, it's our way of protecting ourselves. How do we deal with these types of scenarios when we don't want to let our cape go because of the disappointment? Stephanie, if you could chime in on that one, that would be great.
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
I would love to say that people want people, right? That people will show up for us in the way that they always will. We wish they would, but that's not reality. People can only love us at their capacity. So, I think how we navigate disappointment is how we navigate our expectations. I think we start out with, number one, verbalizing what we need from people and communicating “this is what I would like to see,” and then giving them an opportunity to show up and do that exact thing that we've asked them to do. If we haven't communicated it, being okay with saying, “Hey, ooh, what I meant was this.” And then if people fail to do that, be okay with the reality that yes, it will hurt. Yes, it could be painful and disappointing, but that people can only show up for us in their capacity.
And if they don't do that, that doesn't mean that you don't deserve that thing. It just means that they don't have the capacity to give it to you. But that also means you have to find somewhere else. So, I love the idea of fostering community, fostering support. Yes, you deserve the love and dedication and support from the people that belong to you, right, who should intrinsically give that to you. But if they can't, that doesn't mean you don't get it. That means seek out, look for opportunities, look for community. I heard a beautiful story when we were logging in, of people showing up for each other and being at the bedside of each other. Those people didn't sound like they were related. Those are friends and relationships that were cultivated in different communities. If the people you wish could show up for you, don't, don't take that on as “you don't deserve it” and just neglect yourself because they can't do it. Then you are harming yourself just as much as they did. Make sure you seek out those opportunities.
That leads me to the next question. How do we go about juggling, taking care of ourselves, our children, our parents, especially when we're in what we call the “sandwich generation,” right? I'll ask Latoya, because Latoya, you're the younger one on the panel. How do you navigate all of that? Especially when you have young kids? Then I'll ask Miss. Marilyn and Thomasina the same thing, as well. But Latoya, how do you navigate trying to manage everything, including yourself?
I don't know how. I mean, it's definitely God's grace that I've been able to manage still being a mom to very young children who can't do anything for themselves. We still have to bathe them. We still have to brush their teeth, still have to prepare their meals, to pick out their school clothes. It's by God's grace and, I guess, they give me my strength. They give me a reason to live and to push through and just that resilience, you know? I think it just taps in as being a natural woman and a natural mother, it is what pushes me through. Just knowing that, the other thing, too, for me, is that for a while I also felt guilty because they weren't able to enjoy their normal activities.
I had to pull them from school and daycare because I was scared of getting sick because I was in the thick of chemo, and pulling them from their other activities that they were in. But now I'm in a better place even though I'm still in treatment. I just don't want their childhood to be further impacted by this cancer. I'm not going to continue to allow breast cancer to rob them of their childhood, from the trauma that they're already still trying to work through and recover through.
Thank you. And Thomasina, I'm going to ask you that question, but I want to ask it in a different way because you do have adult children and you've been dealing with this since 2005. There's been a different transition. How do you navigate a relationship with your adult children and a diagnosis, especially when you have one or two that are in their early adult ages, like 21, 22, and they start to pull away? They create distance between you and them after being diagnosed with breast cancer. How do you deal with that?
I think when you start realizing that they're pulling away from you just try talking to them a lot and, if I'm thinking something is a certain way, instead of assuming it, I ask them and I realize it's not what I think it is. I keep them informed that I appreciate them and love them for helping me, but there's a lot of things that I can do, to let me do whatever it is I can do on my own, as much as I can do it. And when I need the help, I'll let them know, pretty much. I guess they’re just afraid that something's going to happen to me. Since it's been so long, it's a little better. Sometimes they kind of forget me, in a way, but it's better now since I've been dealing with this since…I think it's 17 years already. I'm still living with it. So, thank God for that. And, reach out. We talk a lot, all of us, my daughters and my grandsons, we talk a lot about things that we think the other person is feeling, so we can make sure we know what it is. Because the majority of the time it's something different than what you think. You know, so I talk to them a lot. I compensate a lot.
And you know, that's a great point. I want to say thank you for sharing that with us. Stephanie talked about communication and sharing your emotions and being vulnerable and transparent, and I think that's important for us to be able to communicate.
Stephanie, I want to ask you, can you give us some language to help our family members help us have this conversation, and help us to help them process what we're dealing with and what we're going through? Especially when they don't see illness, right? They don't see our hair gone, they don't see the change in our nails, they don't see us walking with a cane or anything of that nature. They just see, “Oh, you're fine.” Kind of like what Thomasina said: Sometimes her children even forget. Can you give some language to help us to be able to have that conversation, so that they can process what we're actually dealing with?
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
So, where it's really important to start, is ask them what they know. “Tell me what you understand about what I'm going through, and about my illness. I want to make sure that I can answer any questions you have. But most importantly, I want to know what you know.” I think that's a really great place to start because it levels the playing field. I say the same thing to my clinicians and my physicians. I tell them, “When you want to know where a patient is, ask them what they understand. What do they know to be true?” I think that's where you start, because then you can fill in any gaps and say, “Well, actually, and I know it looks like mama's doing whatever…I'm grateful I'm doing as well as I am, but here's what I need you to know about what's going on with my body and my health. And also, here’s what I need for me.”
And explain those things. Sometimes people don't know. They think that they're giving you the break or they're giving you the space. I saw somebody in there about preserving your energy, because you do also have to preserve your energy and your space and navigate and set your boundaries. Sometimes people think they're giving you what you need. I think it's really important to ask the questions that are important and then use it, just like if we were in relationship counseling.
It's just like the TV shows make it, “I feel this when you do this, or when you didn't do this, this made me feel this way.” You take the ownership of that onto yourself and make it really about what that dynamic is. And then say, “I don't want to misinterpret, I want to make sure I understand. Right now, it feels like you aren't as worried about me, or I don't feel as close to you, or I feel like we're disconnecting. But, I know that maybe isn't true, so I want to make sure we stay tight. Can we talk a little bit about what's going on?” I believe in transparency, but I also believe that we have to make space for people to have an emotional response to our transparency. You can't tell me you feel like I haven't been there for you, and then be upset, that I'm upset, that you’re upset. You have to make space for both emotions: for yours and theirs. I think Miss. Thomasina said a really great point about the misunderstandings that can occur, making sure that we ask for clarification before we say, “well, you’re not showing up for me.”
Well, maybe they also have their own stuff, or maybe they're navigating their own fear. They're trying to figure out what to do with that and don't want to bring you down because they don't want to ask you every day, “Well, are you all right? What did the doctor say? What's happening?” So, they don't know what to do. I think a lot of that can happen with just small communication. What do you know, this hurt me, this I felt this way. I'm sure it wasn't your intentions, but this is what I perceived from that. Can you help me better understand? So, start with maybe identifying how you feel, then what their behavior actually did to you.
Awesome. Thank you. That was great insight. Right now, especially with COVID-19, everybody's going through something. Sometimes we have situations where people compare their scenarios, or their health crises, or their life crises with ours. And it really can be a hard pill to swallow, or it can hurt us when someone makes a comparison with whatever they have going on. How do we deal with that, when we say, “You know, you can't even compare what you're going through with cancer.” How do we have those conversations with them, to let them know that they've hurt us, for one, and really want them to understand that we truly need them. We need their support, we need their help, but we don't want them to compare us because what we're going through is a tragedy for us. They may be going through a tragedy for themselves, but this is our tragedy and we don't want the comparison. Can you talk to us a little bit about that, Stephanie? How do we manage or navigate that with other people?
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
I think that's a tough one. That's a really a tough one because sometimes people will try to share as a connection point, not necessarily to negate what your experience is, but to relate. It's tough because oftentimes we're not trained or equipped to communicate in a way to just let you have your space and let you share. First, I'm going to encourage people to give people grace, and extend yourself the same. The other thing is, be okay with saying, “You know what? I'm all full-up today. I only have the emotional capacity for my stuff. And although I love you and care for you, I really don't have the space to hear this. So, what I need from you is a listening ear.” Or, for example, today, give the permission to not talk about cancer. If you just want to hang out and not talk about it, then say, “Hey, hey, today I want to focus on this. I just want to focus on getting my nails done. I want to do anything else. We're not going to talk about cancer today. I want to break. I live it every day. I don't need you to talk about it, for me, today.”
But, also, people don't know what to say. Sometimes people say dumb stuff., I know y'all probably know, but people think dumb stuff, and they're really trying to be supportive. They really aren't aware. They just want to be there. And sometimes we're uncomfortable. We just say words. It's important to be okay with saying, “You know what? I appreciate you trying to show up for me and be supportive, but what I really need from you is this.” Or, sometimes, “Can I just have this space today? I really just need to talk and vent.” And stop them – have no problem stopping them, and saying, “I just can't take this today. I love you, child, but no, not today. I'll call you when I have some space, because I really want to be there for you when I can. But today I don't have it.” That also models that self-care for themselves as well.
And if they don’t respect that boundary, then that's a whole other conversation.
Miss. Marilyn, you have two adult sons who had to deal with that grief of losing their father alongside you. Then, a few years later, the pandemic hits, and then their mother gets diagnosed with breast cancer. How did you have conversations with your adult sons? How were you able to communicate to them?
Marilyn Drew Thomas, MA:
Well, first of all, I did not. I'm blessed that my daughter-in-love is awesome. She took me to get the biopsy and we didn't tell where we were. We just went out that morning, and I had the biopsy, and then we went to breakfast in the car at Starbucks – because, remember, nobody went anywhere inside during the pandemic, that phase of the pandemic. Once I got the confirmation that it was cancer, I had to tell them my sons at the same time, that's the mother in me. So, I said, you all come on over. And I told them, and once I set it up and said “This is what's going on and I have to have this, this and this.” They took moments of relief and then they went right into pragmatic moments of, “Okay, what do we have to do? What are the surgery dates, do you have to drive?” Both of them drove me to surgery that morning. I think one or both of them spent the night there, or they asked, “Do you need to come to our house?” “No, I'm staying in my house.” And then we just went on a row, because we had just gone through this with their father. It was very much to-the-point, and hoping for a better outcome than what we had with their dad.
Thank you. Well, before we wrap up, Stephanie, I have one question for you – one final question from our audience. What do you do when your family doesn't agree with your decisions regarding your treatment? Whether it's go on the conventional route or not go the conventional route? How do you navigate that when your family is not in agreement with your decisions?
Stephanie Broadnax Broussard, LCSW, ACHP-SW:
I think that's a tough one. I think the first thing is the awareness that sometimes people act out their love in bad behavior. Think about a kid, right? Sometimes when they don't know how to process what to do, they have bad behavior. Sometimes our family, in love and concern and compassion, will act out because they just don't get it. They can't process it. So, maybe a little bit of grace there, but most importantly: it's your life. I think one of the most important things is that you only get one go at this. It is important to advocate for yourself, to speak up and step in the boldness of your voice. That means with your healthcare providers, that means with your family. To speak up and choose to live on your terms.
Sometimes when there's a lack of control in a lot of different areas, assume all of it where you can. That means that people, when they truly love you, they may not understand it, but they may stand beside you. You have to set that boundary to say, “Hey, I've made this choice and you may not get it, and you may not understand, but if you're going to choose to be here, here's what I need you to do. And if you're not going to be on board, you can't be here. You have to love me from a distance. Send me a plate, send me whatever. But you can't be in my space if you're not going to show up in the manner that I need you to.” It's okay to say that. I think sometimes we don't give ourselves the permission to advocate for ourselves as intensely as we probably should.
That doesn't mean you're acting out. It's saying, “Hey, you, here are the parameters. I'm choosing to do A, B, and C, and if you love me, and I want you here to walk beside me, then you need to be a cheerleader for A, B, and C. If you can't do A, B and C, I want you to love me from over there, and I'm going to love you from over here. It doesn't change that dynamic, but what I need is this.” And be okay with how the chips fall. I think that's the tough part, right? What happens when the chips fall, and maybe people do choose to not show up for us, and we're dealing with that disappointment?
I think that's where we have to prepare ourselves, once again. That goes back to expectations. People can only love us at their capacity, but also, if people are having trouble processing, offer them some support. There are therapists like me who specialize in this, who support caregivers and families who are also trying to process, right? There are a lot of caregiver support groups, there are family support groups.
Awesome. Thank you so much to our entire panel, and all of you, for such a rich conversation.