July 2017 Ask the Expert: Newly Diagnosed, What Do I Do Now?

July 1, 2017

Learning you have breast cancer can be overwhelming. You’re hearing new words, meeting new people and making treatment decisions, all while trying to live your life in as normal a way as possible.

Nobody understands this better than people who have experienced it themselves. So in July, Living Beyond Breast Cancer presented a panel of women with different subtypes and stages of breast cancer, including metastatic breast cancer. They answered your questions about being newly diagnosed with breast cancer, including how to make difficult treatment decisions and how to live well despite the worries and fears that come along with cancer.

Our Panelists

Joanne Hayashi, of Kaneohe, Hawaii, was diagnosed with triple-negative stage III breast cancer in 2015 at age 33. She lives with her husband, her parents, her sister, her brother-in-law, two nieces and a cat. She volunteers with LBBC’s Community Connector program.

 

 

 

 

Kimberley Jennings, of Maidens, Virginia, was diagnosed with hormone receptor-positive, stage IIB breast cancer in 2014, at age 49. Doctors later discovered the cancer was HER2-positive as well. She is married with one adult son. She volunteers with LBBC’s Community Connector program.

 

 

 

 

 

 

 

Kathy Townsend, of Helotes, Texas, was diagnosed with hormone receptor-positive, stage IV, metastatic breast cancer to the bones in 2015, at age 46. She is married with three young adult children and one teenager. She volunteers with LBBC’s Community Connector program.

 

 

 

 

 

Remember: We cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.

 

Did you know much about breast cancer before you were diagnosed? I didn’t and I feel overwhelmed. How did you deal with getting so much new information?

Joanne: I didn't know anything either and was totally overwhelmed as well. There is so much information out there, right? Here are a couple of suggestions:

  1. Stick to trusted resources. For example, Living Beyond Breast Cancer's articles are evidence-based and vetted by healthcare providers. Instead of randomly searching on the internet, I would stick to a few websites and search within those sites.
  2. Be OK with the fact that you don't know every single piece of information out there. Yes, it's important that you have a good understanding of your disease and what to expect, so that you can be your own health advocate. At the same time, don't forget that it's just as important for your body to get the rest that you need and to lessen the stress burden. I recommend resources like the Guide for the Newly Diagnosed. This is a good starting point for the information that you might want to prioritize.

Kimberley: I didn't know anything about breast cancer prior to diagnosis. So many of my ideas were misconceptions. I needed information to cope, so I asked lots of questions, scoured the internet for reliable resources and relied heavily on my nurse navigator to guide me in appropriate directions. The more I understood about my disease, the less overwhelmed I felt.

Kathy: When I was first diagnosed I really thought I knew a lot about breast cancer. My sister-in-law was coincidentally going through early-stage breast cancer treatment when I got my diagnosis. Because of her experience I thought I knew what to expect. I discovered very quickly, however, that every person diagnosed has a unique pathology and no two people are the same when it comes to treatment. I quickly became overwhelmed and very frightened when I was told I had stage IV breast cancer and there was no cure. I felt like I was backed up to a brick wall with no way out. This feeling of being overwhelmed is something every person feels when first diagnosed, so you are not alone.  No matter how much knowledge you think you have, you are never truly prepared when it happens to you. 

People came out of the woodwork with all kinds of advice. I was having difficulty knowing if I was doing the right thing or if I was making the right decisions. The way I dealt with the influx of advice was learning to build a good relationship with my oncologist. Everyone means well and they are just trying to help, but at the end of the day I decided to focus on only the advice given to me by my doctor. If I felt unsure about anything, I would reach out to other breast cancer professionals for a second opinion. I also built a relationship with other women who were going through the same diagnosis and they helped me to find balance, brought me comfort and gave me a safe place.  

How did you deal with telling your kids about your diagnosis?

Kimberley: I was very concerned about telling both my son and my parents. I was sandwiched between the two, as my parents were aging and required some of my attention and my son was launching into adulthood. I hated the thought of telling them. I hated for them to worry. I hated not having the answers and a clear cut path that I would travel. But I told them. I told them the facts as I knew them and when I knew them. I told them in person. I remained upbeat and tried to provide reassurance to them. I had to believe that I could handle the diagnosis, so that they could believe and handle it with me.

Kathy: I have four grown children. One would think that because they are older that it would be easier. But it most definitely wasn’t. Telling my children that I was diagnosed with stage IV breast cancer was one of the hardest things I ever had to do. As a mother, I’ve always tried very hard to protect and guard my children from anything that could bring them pain. It hurt me deeply to have to tell them something that was going to bring them pain and sorrow. I’ve always been open and honest with my children so I decided I would handle this the same way I would with any hardship that we were facing. After I told them, we hugged, we cried and we floundered for months together. Eventually we all accepted what had happened and this helped us to be able to move on with our lives with a new normalcy.

The one thing I never do with my children is make promises that may not come to fruition. We prepare for the worst, hope for the best and just try to take advantage of every moment possible to spend quality time together. Cancer takes so much away from us, but I don’t allow it to take away any possibility for happiness. It is important for my kids to see that life continues to bring us joy even in the midst of chaos.

I was just diagnosed, but I’ve already had a few people saying strange, insensitive or rude things to me when I tell them I have cancer. How did you deal with that?

Joanne: I had that too, and almost 2 years from my diagnosis, I still have that! First, it's OK not to respond to every single person who says something. Rather than spending time and energy to come up with a response, I just simply ignored some of what was said and moved on. Second, even when I perceived a comment to be insensitive or rude, I still believed that the person saying it did not mean to hurt me. Cancer is a difficult topic for friends and family members, too. Realizing that the comment did not come with a malicious intent can make it easier to forgive and forget. Third, if it's someone close to me with whom I have a lot of interactions, I've had to say something like "I'm not seeking to debate this topic. I'm just telling you what my thoughts are and just need you to listen right now."

Sometimes people feel like they need to say something and end up saying something insensitive. You can remind them that it's perfectly fine for them to just listen and not say anything.

Kimberley: I believe that people have good intentions and don't realize the impact of the things that they say. If you haven't dealt with a devastating diagnosis and disease, you just don't know. People have the same misconceptions that I had before I started to travel this road. Some days I correct their misconceptions and sometimes I just give them grace and know that they are struggling with what to say and they do not intend to be hurtful.

Kathy: Unfortunately, there are people in this world who are not very good at giving support. They don’t know what to say so sometimes they say all the wrong things and don’t realize that they are being insensitive. After 2 years of living with this diagnosis I have learned to just let things go. I have a strong support system in place and that is where I draw strength. It is important not to let outside negativity affect you. Create a world around you that is positive and supportive and it will help give you the ammunition you need to handle the insensitivity that unfortunately comes with the territory of a breast cancer diagnosis. Avoid toxic people and keep them at a distance. You can’t change how people treat you, but you can control how you allow it to affect you.

Did cancer change your relationship with your spouse? I’m worried about the stress that this diagnosis is putting on us.

Joanne: Yes, cancer has changed our relationship ... although I would say it has evolved for the better. The last 2 years since my diagnosis have been the most stressful out of our 16 years together as a couple. I think that the emotional and financial burden, coupled with the changes to your body and the side effects from all of the treatments and medication would strain even the strongest of relationships.  

In reality, during treatment, it might be hard to find the time and energy to try to really fix anything or address any deep issues. For me, I was just trying to stay alive, and it was difficult for me to deal with a whole lot of other things outside of that. I did go to sleep each night telling my husband, "Thank you for today." Hopefully, your marriage is strong enough that a little acknowledgment and appreciation can carry you through the hardest of days. When you have the time and energy for it, an open two-way dialogue is important to set expectations and let one another's feelings be heard. 

I've been lucky to have a husband who has been willing to grow and change with me. Sure, things have changed quite a bit and our life now has a huge emphasis on health and wellness. However, we have new things that we enjoy doing together, like finding new vegetarian dishes at restaurants, or exercising and running together. It takes work, but I hope that you and your spouse will eventually find a new normal for the two of you. 

Kimberley: Cancer strengthened my relationship with my spouse. My husband was my rock. He was with me at every appointment, scan and treatment. He was supportive and loving and positive. This experience has made us stronger and closer and that is one of the many blessings that cancer has given to me.

Kathy: A breast cancer diagnosis at any stage is immensely stressful. It changes you in ways you never thought possible. With my stage IV diagnosis, my life came to an abrupt halt and along with that so did opportunities for intimacy with my spouse. The changes I have gone through since my diagnosis have caused a ripple effect of unwanted changes for my spouse. The stress of losing our normal lives together as a couple was incredibly challenging. My spouse became overwhelmed with taking on the caregiver role. With all of the focus being on me, he quickly felt like he was invisible and pushed aside.

We finally decided that we would take time every few months to go on an outing together. Doing so has been very therapeutic. It allows us time to just be a couple and do something normal together. It is very easy to allow cancer to slowly take over your entire life. It’s important to find ways to reclaim your lives together as a couple. You can’t ever go back to being the same couple you were before, but you can reinvent your relationship and move forward together embracing opportunities for intimacy. It’s very important for our spouses to find an outlet for their stress. They also need a foundation of support. None of us can face the challenges of a breast cancer diagnosis alone. Reaching out for support and having an open dialogue with each other is very important.

I have stage IV breast cancer that has spread to my spine. It’s not obvious from the way I look that I have cancer, and I've told very few people outside my immediate family about my diagnosis. I feel alone in my battle except for the staff at the clinic where I receive treatment. My family doesn't seem to understand how vulnerable I feel. Do you think it would be helpful to let more people in my circle of friends know about my breast cancer?

Kathy: All of us with a stage IV diagnosis march to the beat of a different drum. I tend to be very open with everyone about my diagnosis and treatment. But some like to keep their diagnosis very private. It’s important for you to decide what works best for you and what brings you the most comfort and support. I have found having an open dialogue with friends and family to be greatly beneficial in helping me find those who I can truly depend on for support. It took a long time for me to build this support system. Some of my family and friends have chosen to take a step back and that is OK. Not everyone is equipped to handle our daily struggles.

I have also found many online support groups for stage IV breast cancer. Being able to have a private venue to discuss my daily struggles with those who are going through the same diagnosis has been an invaluable resource. I find that even though my friends from my life before cancer are very supportive, it is impossible for them to truly relate to my inner and physical struggles. When you look OK, people equate that to you being OK. With us that is not the case at all. If you are feeling isolated I do think that you need to start opening up and allowing some people into your world. This is a stressful diagnosis and finding a support system that helps keep you uplifted is very important. 

I’ve heard a lot about how bad menopausal symptoms from hormonal therapy can be. Have you had these side effects, and have you found ways of dealing with them?

Joanne: Although I was treated as triple-negative, I was slightly positive for estrogen, so my doctors put me on tamoxifen. Although not severe, I am experiencing hot flashes, mood swings and weight gain. It seems like healthy eating, exercise and stress management is helping to keep the side effects minimal. I also see an acupuncturist and that also helps with some side effects.

Kimberley: I took tamoxifin for 2 years and then my doctor switched me to anastrozole (Arimidex) after he confirmed with a blood test that I was indeed in menopause. I have had hot flashes on both medications and some achey joints. I have found that gentle exercise on a regular basis helps a lot with the joint pain. The hot flashes happen, but they pass as quickly as they arrive. Deep breathing and mindfulness helps in the midst of the flash.

Kathy: I was premenopausal when I was diagnosed with stage IV breast cancer. Being estrogen and progesterone receptor-positive meant that the doctors had to halt my production of those hormones in an effort to keep the cancer from spreading further and get it under control. I was pretty much thrown into a forced menopause as a result and the side effects hit me like a brick wall. Night sweats, hot flashes, mood swings ... yes, I had them all and I was really, really miserable.

The best advice I have for women who are going through these side effects is to communicate with your oncologist and to go and see your gynecologist for an exam. There are medications available to help ease the symptoms. Don't feel bad if you need to use them. After toughing it out for several months I finally reached out to my doctors and they had many suggestions for me that were very successful. It took some time but I was finally able to find a combination of medications that eventually helped me eradicate my hot flashes, night sweats and mood swings completely, and I feel so much better. I also recommend purchasing cooling towels and keeping one with you when you are out and about in the heat. I pull that out when I still have the occasional hot flash and use it to help cool myself down. You don't have to live with the side effects. There is help available.

I’m scared about chemotherapy. What can I do to feel less scared?

Joanne: Yes, it's scary to not know what to expect and how it might affect you. I helped to ease my fears by being prepared and feeling like I was logistically well-equipped to handle whatever might come my way from the chemo treatments. My husband helped me get my bedroom "chemo ready" by getting one of those hospital bed tables to go over my bed. He installed a doorbell buzzer by my bed so that I could buzz people in the living room if I needed something. We decorated the walls with cards that I received from my family and friends. We also bought things like a bed wedge and a tablet holder to provide comfort while I was resting.

I always walked around with an "anti-nausea kit" with medication, queasy pops (candy to alleviate nausea), Sea-Bands, and a throw-up bag in case those interventions did not work. For my infusion days, my husband packed a "chemo bag" for me and it had everything I needed in there...laptop, headphones, fleece blankets, socks, Kindle, snacks, anti-bacterial wipes, etc. You might not be able to control what comes your way, but knowing that you have some control over how you respond to it can hopefully help you feel a little less scared.  

Kimberley: I read as much as I could from reliable sources about the chemotherapy drugs that I was going to be given. My chemotherapy nurse had lots of information and tips for handling the side effects. Everyone's experience is different so try to keep an open mind and positive thoughts as you go into it. I was able to work quite a bit while receiving treatment. I think the scariness diminishes once you are in it.

Did you lose your hair? How did you deal with that?

Joanne: Yes, all of it! I went to a salon to get it all buzzed off after about the second infusion to avoid clumps of hair falling out on me. I also got a wig, but it was too hot to wear. I did get a lightweight cotton hat that I wore out to protect my head from the sun. When I wasn't wearing my hat, I did get some stares sometimes, but it didn't really bother me. One side perk is that it's SO much easier to take a shower without hair! As it grows back, you'll have to deal with your hair at various awkward lengths, but that's nothing that a headband and a couple of hair clips can't fix!

Kimberley: I did lose my hair and that was much more difficult than I thought it would be. I let mine fall out in clumps for a while and I cried daily in the shower. One day I was ready and asked my husband to shave my head for me. He was kind and gentle and we laughed a little. I figured out a new style for myself and ordered all kinds of hats and scarves to get me through. Some people will say that "it's just hair" and "it will grow back," and while that may be true, it was still one of the hardest parts of this road for me.

Do you still think about breast cancer every day? I’m worried I’ll never be able to stop thinking about it.

Joanne: Yes, I think about it every day. Honestly, almost everything that I do now has been colored by cancer: what I eat, how long I sleep, when I exercise, how I spend my free time ... it has all changed because of the cancer. There's also that looming fear of recurrence. It's hard to not be concerned with every new pain, change, or discomfort in your body. However, I don't think of all of these changes in my life as a bad thing. For me, it's important that I stay on top of my health. I know that my risk of recurrence is higher than others because of my subtype, stage and age. Staying vigilant makes me feel like I am in control of the disease and it makes me feel less scared about the risk of recurrence. At the end of the day, I'm not just fighting cancer, but helping to prevent a whole host of illnesses and chronic diseases. 

I'm also part of a couple of support groups, where I talk to other women who understand each other because we're all going through similar issues. Sometimes it just helps to talk it through and get it out of your system. We also share tips with each other on how to deal with various issues. If you would like to talk to someone who has had a breast cancer diagnosis and can better understand what you're going through, LBBC has a great Breast Cancer Helpline at (888) 753-LBBC that you can call and talk to a trained volunteer.

Kimberley: I am approaching my 3-year cancerversary. I think about breast cancer quite a bit, but not as much as when I was in active treatment. I think breast cancer is like a stalker and is always in the back of your mind, but as time goes by, the stalker is less scary. I live every day to the fullest and enjoy every moment. I have found that helping others helps me, so I spend a lot of my time mentoring, advocating and volunteering with breast cancer events and organizations. I try to control the things that I can. I take good care of myself: I eat right, I exercise ... knowing that I am doing everything in my control to be healthy eases the fears as well.

Did you have breast reconstruction surgery? If so, what kind, and are you happy with it?

Joanne: I ended up opting for a lumpectomy, so I did not get reconstruction surgery. However, I was originally planning on getting a bilateral mastectomy and did a lot of research on it. LBBC's resources, including this webinar on breast reconstruction was very helpful in learning about the experiences of people who chose different options.

Kimberley: I had a bilateral mastectomy with tissue expanders put in place immediately. I had the tissue expanders for 18 months and then was able to swap to my permanent implants. I chose to go with silicone implants and I am very happy with them! They are comfortable and look natural!

I’ve had a double mastectomy and chemotherapy, and am also supposed to have radiation and take trastuzumab and hormonal therapy. I am very scared I will go through ALL of this and it still might not work. Do you have any advice for me?

Joanne: I think many of us share that fear ... what if our treatments don't work? Don't forget that the medical treatment that you receive is just one factor in your outcome. There are other factors at play, including many that you have control over. Nutrition, exercise, stress management, alcohol intake, complementary therapies ... It helps me to ease my fears by focusing on those factors that I can control. 

Kimberley: I had all of that as well. I have followed all the guidance and protocol that has been recommended by my team. I take good care of myself by eating well, exercising, managing my stress and sleeping well. The fear of reccurrence lurks in the back of my mind, but at this point I know that I am controlling what I can and that I am very healthy. I feel like if it comes back, I am well equipped to deal with it.

Kathy: I'm pretty sure all of us go through similar emotions when first diagnosed. That feeling of being overwhelmed, uncertain and scared is unavoidable. So much has to happen very quickly and there really is very little time to absorb it all and be sure that what we are doing is the right thing. This is where it is really important to have a good relationship with your oncologist and to bring these fears and concerns to your doctor. Having an opportunity to talk these fears out with your doctor can really help relieve some of your anxiety. I am very lucky to have an oncologist who is always very honest, but at the same time hopeful. Holding on to hope really is the best way to move forward. The best advice I ever received and what I like to pass on to others going through treatment is to try not to waste any time worrying about what might happen or what could happen. Try to re-claim your life one day at a time by focusing on those things that bring you joy. No one can give any of us a 100 percent guarantee of what lies ahead in the future. The only thing we can control is what happens today. 

Have you had genetic testing? Why or why not, and what were the results?

Joanne: Yes, I had it performed because it was recommended by my doctor based on my age at diagnosis. My results were negative for any known mutations. I know that some people are hesitant about getting this testing because they are afraid to know. However, based on your test results, your treatment protocol could be different. Lumpectomy would not have been an option for me if I was positive for a BRCA mutation, for example. It was important for me to know my genetic test results so that I could make the best decisions for my treatment.  

Kimberley: I was tested for the BRCA gene mutations and it was negative. I wanted the information to make the best treatment decisions for myself and so that my family members would have that information as well.

Kathy: I did get genetic testing and the primary reason was because I have three daughters. I had a grandmother who was diagnosed with breast cancer so I was concerned it might be hereditary. I tested negative so it was somewhat of a relief that maybe my daughters might have a chance not to have to go through a breast cancer diagnosis. It was recommended to me to have it repeated every few years because advances are constantly being made in this area. So I might have it done a second time in a few years just to be certain.

My doctor suggested joining a clinical trial, but I’m not sure if I’m comfortable with that. Have you done any clinical trials?

Joanne: I have not participated in one, but I have looked into them. LBBC has excellent information about them here. Also, the Dr. Susan Love Research Foundation recently produced a short video series on this topic and I found it very helpful.

Kimberley: I participated in two clinical trials while going through treatment. My oncologist highly recommended participation because you receive the "gold standard of care" plus you may be getting something else in addition that could positively impact your outcomes. I was more than happy to take advantage of participating in these trials to help myself, but also to help the future of treatment.

My doctors keep telling me how important exercise is, but all my appointments and treatments and worries make exercising the last thing I feel like doing. Did you experience this? Do you have any advice?

Joanne: As a non-athlete and non-exerciser, I found all of these recommendations for exercise very daunting. I didn't exercise before my cancer, and between all of the appointments, not to mention the fatigue and nausea, there was no way I was going to start exercising during my treatments. However, you won't have to look very hard to see all the research showing that exercise leads to lessened side effects and improved outcomes for survivors. I took this to heart, bought a Fitbit, and gave myself a goal for the number of steps to take in a day. When I felt good, I would shoot for 10,000. On bad days, I would have a lower target. I also incorporated nature walks when I could. I found this to be very calming and therapeutic.  

Hopefully, the positive effects of walking will lead you to become more active. It always helps to exercise with a partner or a group. You might want to research classes in your area that specifically cater to breast cancer or cancer patients. I attend an exercise class at a local hospital that is specifically geared towards breast cancer survivors. The peer support definitely keeps me going. LIVESTRONG has a nationwide partnership with the YMCA to provide exercise classes specifically geared towards cancer survivors. You can check here to see if there are classes in your area.

Side note: My walks eventually turned into short jog spurts (30 seconds at a time). I'm proud to say that I was able to run a full 5K without stopping last weekend. I also go to the gym at least twice a week now! I never had the time or energy for exercise prior to my cancer ... funny how priorities change.  

Kimberley: I found that I felt better throughout my treatment on the days that I could get some movement or exercise into my day. I joined a class at my local YMCA during my treatment that was designed for older adults. The pace was just right for me at the time, and I made some lovely older friends who helped me keep my perspective and sense of humor on those days that I just didn't feel like moving. Post-treatment, with the hormonal therapy, my joints and energy level are revitalized as I incorporate movement and gentle stretching throughout my day. As much as I don't want to exercise some days, the benefits after doing it are worth it! Start small and do what you can. Every little bit helps!

Kathy: Oh yes, this is definitely a difficult thing for me. As a stage IV patient I will always be in treatment. Just dealing with the constant doctor appointments, treatment schedules, side effects and life as a full-time wife and mom is exhausting. Then the doctors tell you to make sure you exercise. Really?? It does seem impossible most days. But, I know that when I do squeeze it in I always feel better, have better mobility and I have less anxiety. Try to remember that when they say "exercise" it doesn't necessarily mean high-impact exercise. Simple things like taking a slow walk around the block, swimming gentle laps in the pool, yoga or any type of low-impact exercise can be very effective. Try to find some type of movement that you enjoy and make doing that your short-term goal. Once you begin to feel better you will be able to do more and more over time.