Navigating the changing landscape of early-stage breast cancer

Session 1: How treatment for early-stage breast cancer has changed

Wednesday, May 14, 7:00 pm (ET) – 8:15 pm (ET)

Join us for an update on early-stage breast cancer. Dr. Lustberg will cover key topics including the impact of treatment de-escalation, or overall decrease of treatment, clinical trials, and advancements in types of ctDNA and tumor tests. We’ll also discuss treatment updates by sub-type and answer your questions.

Speaker: Maryam Lustberg, MD, MPH

Moderator: Jean Sachs, MSS, MLSP

Watch or listen to the recording below, or read the transcript here.

Session 2: Psychological impacts of new treatments, testing, and the fear of recurrence

Wednesday, May 21, 7:00 pm (ET) – 8:15 pm (ET)

A breast cancer diagnosis can be emotionally overwhelming, especially when facing difficult treatment decisions and concerns about recurrence. Join this session to learn strategies for managing anxiety, fear, and the emotional challenges of a diagnosis from our expert, Celeste Vaughan-Briggs, LCSW. You’ll also hear from those with early-stage breast cancer about how they’re coping with the emotional impact.

Speaker: Celeste Vaughan-Briggs, LCSW

Moderators: Lynn Folkman and Shannon Gottesman

Watch or listen to the recording below, or read the transcript here.

Transcripts

• Session 1
• Session 2

Session 1: How treatment for early-stage breast cancer has changed

Jean Sachs, MSS, MLSP [00:00:08]

Welcome, Dr. Lustberg.

Maryam Lustberg, MD, MPH [00:00:10]

Thank you so much, Jean, and thank you to the organizers as well as the wonderful audience. You’re taking time out of your evening. I’m seeing all the comments and locations coming through. Thank you for joining us and know that this will be interactive, and hopefully we’ll get some of your questions answered. There’s lots of resources that we’ll share with you.

We have a big topic ahead of us with the goal of having a little something for everyone. Because one thing that I will continue to emphasize throughout this talk is how each breast cancer has its very unique characteristics and that you as an individual have your own special, unique circumstances in terms of what treatments are right for you and how you will tolerate these treatments.

My disclosures are here and will not impact the content of what I will share with you.

Jean alluded to the outline of the talk, which is that I hope to give you a broad overview of where we are with early-stage breast cancer then talk more specifically about different subtypes of breast cancer. This is where some segments will apply to some of you at different junctures. Then we’ll come back together again and talk about more general new discoveries and how we manage symptoms and side effects. And as I mentioned, we’ll make sure to try to take as many questions as they come.

Talking about general trends in early-stage, non-metastatic, breast cancer — we’re referring to stage I to III. Ductal carcinoma in situ is sometimes known as stage 0 breast cancer. Although I didn’t specifically comment on DCIS in some of these slides, I think some of the things that I will talk about will also apply to stage 0. But our primary focus will be invasive non-metastatic breast cancer tonight.

The good news is that advances in screening — and that includes mammography, ultrasound, and MRIs — as well as improvements in how we give therapies — this can include systemic therapy, optimizing our local-regional therapies, including surgery and radiation — all have led to definite improvements in the survival of early-stage breast cancer. In this plot here, you can see the breakdown by the different subtypes of breast cancer. I will go into a little more detail in this next slide.

We know that breast cancer peaks in our 50s and 60s, but as I’m sure some of you are in these younger age groups, breast cancer can absolutely happen in the younger age groups. And this is something that we are trying very hard as a scientific community, as an advocacy community, to draw attention to because younger women can absolutely develop breast cancer. And we are seeing actually a rising incidence of breast cancer in younger women regardless of the age group. The hormonally driven breast cancers tend to be more common, as you can see in these bar graphs.

We continue, unfortunately, to see disparities in how patients do depending on their race. We continue to see worse clinical outcomes and survival in Black women. And lots of work is ongoing in terms of trying to understand these differences.

As I talk about breast cancer, it’s important to emphasize that it’s not one cancer. There is tremendous heterogeneity, and we have different subtypes of breast cancer that we use clinically day to day. When I go see a patient, one of the first questions I ask myself and try to share with the patient and her family is the subtype of breast cancer.

Maryam Lustberg, MD, MPH [00:05:05]

We routinely run three protein markers known as estrogen receptor, progesterone receptor, and HER2. When you have very hormonally driven breast cancers that tend to be much more slow growing they fall in this luminal A category. These tend to have lower proliferation, lower grade, and they tend to respond best to anti-estrogen therapies, and they tend to be less responsive to chemotherapy. But then we have some hormonally driven tumors that may have a faster proliferation rate, and these may need chemotherapy. We’ll talk a little bit more about that. These are known as luminal B tumors.

Then we have our less common, but equally important, breast cancers known as HER2-positive tumors. I like to think of HER2 as a growth antenna. It’s normally present in all our cells. When there is a lot more of it, it’s known as HER2-positive breast cancer, and that is about 15% of our breast cancers. And then we have the basal or triple-negative breast cancers, where all three markers, ER, PR, and HER2 are negative, and these are another 15%.

If we had to go by breakdown, 70% of our tumors are hormonally driven. One-third are HER2-positive and one-third are triple-negative. And the HER2-positive tumors may also have hormone receptor positivity. So we have two targets for those types of tumors that we treat.

That is a very broad overview in terms of the types of breast cancer that we see. I do want to highlight that we are beginning to do what we call genetic testing, or germline genetic testing. Many of you have had this test where you have a cheek swab or a blood test looking for predisposition to breast cancer. There are now genetic panels that look for that.

What’s interesting is that even in younger women, the majority of patients actually do not have a known genetic predisposition that we currently know of. But we are beginning to test a lot more women with breast cancer as well as men who develop breast cancer with these genetic panels.

This is called germline testing because it’s your genetic makeup. In contrast to metastatic breast cancer — and this is not a talk on metastatic breast cancer, but I do want to clarify this point — currently in early-stage breast cancer, we’re not doing genetic tumor profiling of early-stage breast cancer. You may find commercials, or you may be reading articles where we’re talking a lot about different estrogen receptor mutations or different genetic alterations in the tumor. I’m not saying that may not be the future of early-stage breast cancer, but currently a lot of that type of data is in metastatic breast cancer and not early-stage breast cancer. So I did want to clarify that.

Let’s start with the most common type of breast cancer, which is the hormone receptor-positive breast cancer. And there’s a lot to cover because, with this being the most common type, there is so much research in this area. But I chose to break it down into four categories, and then we can have additional discussions based on your questions.

Starting with, we are doing less chemotherapy. And part of the reason we’re doing less chemotherapy comes back to: We’ve all heard about personalized medicine, precision medicine, and it seems like, Is this really happening? What I’m here to tell you and emphasize to you is that indeed, due to advances in profiling tests such as Oncotype DX or MammaPrint, we can directly test the tumor cells for sensitivity and really understand the biology of the tumor. So even though we’re not doing the type of genomic profiling that I mentioned in metastatic breast cancer, we have different tests in early-stage breast cancer where I can actually take this report with me to a patient room and talk about what we call the recurrence score, which is that validated number derived directly from testing your breast tumor after surgery. We can do it on biopsies as well, but in general we do it most often on the surgical specimen.

Maryam Lustberg, MD, MPH [00:10:04]

Then based on a validated algorithm, we can actually estimate what your risk of recurrence is at 10 years if you were to take some type of anti-estrogen therapy — it can be tamoxifen, it can be an aromatase inhibitor. And this last box estimates your benefit from chemotherapy.

In general, if this score is lower, there’s more benefit from endocrine therapy and much less benefit from chemotherapy. The way I would interpret this report with a patient is that the good news is that you have a very hormonally driven breast cancer and that you do not benefit from chemotherapy.

This has really changed how much chemo we give. It used to be, 20 years ago, that any tumor that was 1 centimeter or larger would get some type of chemotherapy. But now about two-thirds of our breast tumors that are hormonally driven can actually be spared chemotherapy. And based on a large phase III data from the RxPONDER study, we actually have data that this even applies to node-positive breast cancer. If you have one to three positive nodes and are postmenopausal, we can use this type of testing to potentially spare you chemotherapy.

This is a really important assay that we use all the time. And MammaPrint, similar idea, tumors are classified into low risk, high risk, or ultra-high risk. And this is critically important for clinical decision making.

For younger women, because a lot of these data were validated in postmenopausal women, there always has been a question of can we use this similar type of data in younger women. And this is something that is the subject of active investigation.

This OFSET study is a large National Cancer Institute-sponsored study, which is asking the question of let’s take premenopausal women with early-stage breast cancer and if their Oncotype recurrence score is lower, they can be randomized to receiving maximal hormonal suppression using shots that suppress their ovaries. They have the option of having helper therapies added to the anti-estrogen therapies. And we’ll talk about those in a second. Or they may be randomized to chemotherapy.

You may be thinking to yourself, Who would ever agree to be randomized on chemotherapy? I think it takes a wonderful patient who’s willing to do that, but the reason that the randomization is happening is because we’re not sure that chemotherapy is truly needed in this favorable biological group. The only way that we can definitively reach that conclusion is through this type of study design.

This trial is ongoing. A little under a hundred patients have enrolled so far, and this is a critically important study for breast cancer.

I get this question quite a bit, which is, there is so much in the news about immunotherapy and a lot of my patients with hormone receptor-positive tumors ask me What about us? Is there an option for immunotherapy?

Right now, immunotherapy use in early-stage breast cancer is being tested in clinical trials. We used to generally think that hormonally driven breast cancers did not really benefit from immunotherapy, that they were what we call colder tumors. They were not immunogenic enough to benefit from chemotherapy.

But as studies have been done, what they have shown is that there is a subset of hormonally driven tumor that actually have an immunogenic profile. And the way we find out which tumors have this immunogenic profile, it back goes back to testing the tumor. Particularly that MammaPrint test. If there’s a subset of tumors, about a third of these hormone receptor-positive tumors fall in that high 2, H2, tumor category. And what studies have shown is that based on studies such as I-SPY 2, there was also a KEYNOTE-756 study that resulted where patients with hormone receptor-positive breast cancer, some of the patients received immunotherapy, other received standard chemotherapy, and particularly in tumors that tend to have lower expression of hormone receptor positivity or tumors that have this more immunogenic profile, immunotherapy may actually significantly improve response to chemotherapy. So there is an ongoing phase III study that’s evaluating this very question.

I would say most patients with early-stage breast cancer are not receiving immunotherapy, but there is some important work going on in the context of clinical trials.

Maryam Lustberg, MD, MPH [00:15:49]

When I talk about endocrine therapy, I just want to clarify that there are multiple terms that are used to describe endocrine therapy. This includes anti-estrogen therapy, sometimes it’s referred to as hormone therapy, which can be confusing because it sounds a little like hormone replacement therapy, which is not what we’re suggesting here. Just know that when I’m referring to endocrine therapy, I’m talking about some type of estrogen-blocking or estrogen-reducing therapy.

I cannot impart enough the importance of this in hormone receptor-positive breast cancer. This is the target. This is what’s driving these tumors. But what we have also learned is a way to help the endocrine therapy work better. If you can think back to your biology class, tumor cells go through mitosis; that’s another fancy way of saying that the tumor cells learn to divide and replicate their DNA or genetic material. What if we had elegantly derived pharmacologic therapy, prescription medications, that actually stopped the growth of cells in this G1 phase, which is part of that cell cycle?

A good way that I’ve seen this explained by my colleagues, and I’ve adopted it, is think of it as a break. What if we put the break on the tumor cell growth and made them freeze in this growth cycle, then the anti-estrogen therapy or endocrine therapy can actually work better. As a consequence of years and years of research, three drugs were developed — two of them are approved in early-stage breast cancer — that block this growth pathway. We’re putting the brakes on and preventing these proteins that are critical for the cell to progress through the growth cycles. These drugs are known as CDK 4/6 inhibitors. So they’re inhibiting the pathway, and by inhibiting the pathway, we’re arresting the tumor cells.

The first drug that was approved in early-stage breast cancer is known as Verzenio or abemaciclib. And then in the last year we had a second drug approved known as Kisqali or ribociclib. These are two agents that we now are routinely using in early-stage breast cancer that has some high-risk features. We’re not using it for the earliest stage I breast cancers. But for tumors that are showing evidence of lymph node positivity or evidence of a more aggressive biology, these are approved hot off clinical trials and ready for use.

Verzenio is used for 2 years along with endocrine therapy, and Kisqali is used for 3 years along with endocrine therapy.

There are patients that are eligible for both, and we do shared decision making, reviewing different side effects. And we decide together which one to go with. There are patients who may be a little bit earlier stage but have high risk features that may only qualify for Kisqali. It’s something that has really changed this immediate survivorship period, that acute period coming off surgery and radiation. Where we used to say, go take your endocrine therapy, now we have these smart pills or targeted therapies. And what the studies have shown is that they reduce recurrences, and ultimately we expect that these drugs are going to show a survival advantage. So these are really important drugs. They do have some toxicities that we actively manage with our patients, but really important in terms of keeping the early-stage breast cancer patients from progressing to metastatic disease. So if you’re a candidate for these, I think it’s a really important set of drugs to keep in mind.

Jean Sachs, MSS, MLSP [00:20:16]

Dr. Lustberg, I’m just going to jump in with a few questions. I’ll try to stick with what you’ve already presented. One question is: What are some of the side effects of the CDK 4/6 inhibitors?

Maryam Lustberg, MD, MPH [00:20:31]

The number one thing that’s reported by patients is actually tiredness or fatigue. This is something that we manage. We know that reducing the dose of the chemo, if fatigue is very bothersome, has not been shown to impact the efficacy of these targeted therapies. So dose modifications are a very active part of our managing side effects with these drugs.

With Verzenio, we also manage diarrhea actively. I think it’s absolutely possible to manage diarrhea by proactive measures of taking Imodium, or loperamide, at the earliest onset of diarrhea. And if it’s not responding, dose reductions can really make a difference.

With Kisqali, we watch out for liver function test changes as well as lowering of the white count. And again, we may hold the drug and then resume at a lower dose. So those tend to be the most common side effects that we watch out for.

Jean Sachs, MSS, MLSP [00:21:34]

Great. And another CDK 4/6 question is how did they decide that two years was the right amount of time to take these drugs. I think this person might be a little bit nervous. Is that really enough time?

Maryam Lustberg, MD, MPH [00:21:53]

Great question. The monarchE study with Verzenio was set for 2 years. Then NATALEE study for Kisqali was set for 3 years. A

A little bit of that is based on the biology of hormone receptor-positive breast cancer and the idea of what we call minimal residual disease, which I have a slide on coming up. Which is that there may be tiny microscopic cells in the blood that we can’t see or measure clearly, although we’re getting better at that. What if we use these smart pills to try to eliminate that early evidence of minimal residual disease. The 2- to 3-year mark is thought to be that time period where we sometimes see those early recurrences in hormone receptor-positive breast cancer. So that was part of the rationale.

But to your excellent question of is that enough, we have maturation data for the monarchE study that shows that even after the drug was stopped after 2 years, patients who received it continued to do better. It’s not that the drug was stopped and suddenly recurrences started to go up. The idea is that that early proactive intervention on minimal residual disease can potentially change the biology of recurrence. So we do think a couple of years is definitely enough time.

Jean Sachs, MSS, MLSP [00:23:24]

OK, that’s a great answer.

There’s several questions about aromatase inhibitors, so I’m just going to kind of lump them into one, and then I’ll let you move on with your presentation. A lot of questions about can you stop it early, can you completely avoid it, how the side effects are difficult. And then also why is joint pain a side effect of some of the AIs?

Maryam Lustberg, MD, MPH [00:23:51]

Yeah, great question. Let me start with the last one.

The best way we understand is that estrogen is a natural lubricant for our joints and tendons as well as our vaginal tissue. What aromatase inhibitors are doing is they’re blocking the aromatase protein, lowering effective body stores of estrogen. So even though they’re at low levels in postmenopausal breast cancer, we’re making them go even further lower. In this very low estrogen state, everything feels stiffer. What you may be experiencing is when you wake up in the morning, it takes longer to warm up. I’ve done work in this area where if we image the joints, we can actually see inflammation. So there may be actually an element of an inflammatory arthritis that’s not a rheumatoid arthritis, but just the joints in this low estrogen state may have evidence of inflammatory changes.

Whether you can take it or not. Pretty much all our studies to date have studied these for a minimum of 5 years. We do have studies in non-invasive breast cancer with tamoxifen for 3 years now. But all our data right now in aromatase inhibitors is with 5 years. Whether you can stop or not, I think is a personal decision based on the stage of breast cancer.

I think if you have an Oncotype report, seeing your actual benefit from endocrine therapy can help in your decision making. What this plot is saying is that if you were to not take the aromatase inhibitor or tamoxifen, this number jumps to about 10%. So there are tumors where this number may be 2%, and you double it because that’s an approximate benefit from endocrine therapy.

If you’ve taken it for a few years, there’s also an additional test that I didn’t make a slide for called the Breast Cancer Index, which can also help you and your doctor decide whether there’s any benefit to extension of therapy. There is a good amount of data that taking a hold for a few months to let your inflammation and joint symptoms get better is absolutely feasible and does not seem to impact recurrences. And then when we switch the aromatase inhibitor, about half the time patients seem to derive benefits.

I think it depends on a few things, but don’t be afraid to discuss it with your doctor in terms of what your expected benefit is and also whether discontinuation or therapy switch is an option.

Not a one-size-fits-all answer, but don’t be afraid to bring it up if it’s hurting your quality of life.

Maryam Lustberg, MD, MPH [00:26:53]

And there’s a quick question on tamoxifen versus osteoporosis.

Tamoxifen is bone protective. If you have osteoporosis, it’s absolutely something that I tend to favor tamoxifen for the right patient with osteoporosis. But also know that there are bone building medications that can be used to manage osteoporosis.

There’s been great advances, tremendous advances in terms of testing the blood for what we call that minimal residual disease. There have been multiple blood-based biomarkers over the years, including tumor markers and circulating tumor cells. But I think the latest variety is known as circulating tumor DNA. And the idea is that tumor cells shed fragments of DNA in the blood. And due to advances in technology, we’re able to detect these now.

There are multiple different assays out there including blood tests that are specifically formulated to your primary tumor genetic makeup and are looking for those tumor fragments in your blood. There are also circulating tumor DNA tests that are in development, and some of them are available now, where they’re not based on testing your initial tumor, and they can detect fragments of abnormal DNA in the blood.

Lots of patients are asking about these tests. I think it’s an important advance in that we are able to continue to improve on this technology. They do give us clues in terms of what may be happening, and they may be a sign that a recurrence may be in the horizon. Now there’s still a chance for false positives and false negatives, but they do appear, particularly for hormone receptor-positive breast cancer, they may be a sign that late recurrences may be something that could happen later down the road. And then I’ll talk about it in the context of triple-negative breast cancer coming up.

There’s a number of studies that are looking at this question, and I’m not going to cover all of them. But this particular one is in partnership with Menarini, Personalis, as well as the Translational Breast Cancer Consortium, where we are actually taking patients who have completed their endocrine therapy for early-stage breast cancer, testing their blood, and if there’s ever evidence of circulating tumor DNA, they have the option to enroll in this study and get a novel anti-estrogen therapy known as elacestrant, which is another, newer type of estrogen degrader pill. So lots of studies like this are in the horizon.

Maryam Lustberg, MD, MPH [00:30:06]

There’s another larger study called the ELEGANT study, which is taking patients with early-stage breast cancer with high-risk features. The idea is, do we want to change up our traditional endocrine therapy agents where we know that sometimes resistance can happen. This is a population of patients where they have the option of potentially receiving new anti-estrogen therapies. The theme of this is in hormone receptor-positive breast cancer, we’re trying to derive newer ways of addressing what we call late recurrences — recurrences that can happen years down the road — by understanding better who’s at risk and can we target them with newer therapies.

This is a little bit of a busy graph that shows you that lots of activity in this early-stage hormone receptor-positive breast cancer looking at new drugs. We’ve talked about tamoxifen, we’ve talked about aromatase inhibitors, but there are a new set of drugs known as SERDs or selective estrogen receptor degraders. And lots of trials are trying to answer the question, perhaps introducing these new drugs either in sequence or in place of your traditional tamoxifen and aromatase inhibitors. Can we more effectively reduce recurrences in hormone receptor-positive breast cancer?

Jean Sachs, MSS, MLSP [00:31:55]

I think I’m going to let you go to triple-negative, but I did want to ask one question because I know that the information you just shared on the Signatera test, or circulating tumor DNA, and there’s also Guardant Reveal. If people listening want to go talk to their doctors about this, when is the time to do it? And who should be asking?

Maryam Lustberg, MD, MPH [00:32:17]

First of all, my message to the audience and patients is it’s absolutely your right to ask these questions and that I think your oncologist should hear your questions, hear your concerns.

I would say that oncologists, depending on which camp they’re in, our national guidelines and national societies are recommending caution right now in terms of routine use of circulating tumor DNA tests.

What we know is that we know that they’re promising. There’s absolutely no question about that. And I really do think they’re going to change the face of how we practice oncology in the future. That’s my personal belief.

At this present moment, the concern or hesitation by many oncologists is that if there is a positive result, we will scan you up and down, and we may not see anything. Outside of a clinical trial, we don’t know what exactly to do with that positive test result. So it may cause additional anxiety, it may not. But this is the concern, that we have a lack of clarity in terms of how to utilize those positive test results.

What do I do in my practice? I tell my patients that I may not know what to do with those positive test results. And there are many patients who say, “I don’t care. I want the test. I want to have as much information as possible.” And I think that’s exactly where we should be landing with our patients, that shared decision making, letting them know that this technology is there, we’re still learning about it, but to have those discussions about pros and cons for each individual case.

Jean Sachs, MSS, MLSP [00:33:56]

Great. Let’s get to triple-negative.

Maryam Lustberg, MD, MPH [00:34:00]

This is about the 15% of our breast cancers, and I’m going to talk about some of our newer trends in triple-negative breast cancer.

If you go online and if you’ve done research on triple-negative breast cancer, I know it can sometimes feel terrifying because a lot of the literature does paint a grim picture about triple-negative breast cancer. But I’m here to tell you that particularly for early-stage breast cancer that’s triple negative, we have made a lot of advances.

One is with immunotherapy. This was the first type of breast cancer that got approvals for immunotherapy. These are checkpoint inhibitors, Keytruda, or pembrolizumab, and they have changed the face of triple-negative breast cancer.

What we have learned through the trial known as KEYNOTE-522 is that when I add Keytruda to traditional chemotherapy, a larger number of patients, almost 14% more, are able to achieve that complete pathologic response. If a patient receives a complete pathologic response with preoperative chemotherapy, the chance of recurrence from triple- negative breast cancer is extremely low. So it really improved outcomes and led to the approval of Keytruda in early-stage breast cancer.

An additional advance has been a group of drugs known as antibody-drug conjugates. This cartoon illustrates that it’s not that they’re not chemotherapy, I like to think of them as they’re a smarter way of delivering chemotherapy. You target a protein on the tumor. It could be HER2, it could be TROP2, it could be any number of markers on the tumor. And that that antibody is linked to the actual chemotherapy that then gets released inside the cell.

Some folks have referred to these as the Trojan horse model of delivering chemotherapy. You kind of sneak in and deliver your soldiers after you’re inside.

This is showing tremendous promise in triple-negative breast cancer particularly, but it also applies to other subsets of breast cancer as well, including hormone receptor-positive in the metastatic setting as well as HER2-positive breast cancer. The reason I chose to highlight ADCs in the triple-negative breast chapter is that we’re actually doing studies right now in early-stage breast cancer for patients who have not had that complete response to chemo-immunotherapy. Then at the back end after surgery, they are candidates for these antibody-drug conjugate therapies. We have a lot of hope that these drugs will help improve cure rates in triple-negative breast cancer.

Back to the circulating tumor DNA, the story is even more evolved, I would say, in triple-negative breast cancer. We have a body of data that shows that if we can detect circulating tumor DNA — particularly after surgery after completion of that preoperative chemo-immunotherapy — that may mean that we are seeing a potential for a higher risk of recurrence.

This is not meant to scare anybody in the audience who may be experiencing this. There are patients who may not experience a recurrence. All of these are probabilities. They’re not meant to predict your particular course. But it’s something that study after study has shown that if we can see it, particularly in that post-surgical period in triple-negative breast cancer, these are the patients that we need to focus more on. We need to target them better, we need to have them enroll in smarter clinical trials. So I think this will change our ability to improve cure rates if we’re better able to pluck out the patients who are more likely to have recurrences. So this will lead to better delivery of systemic therapy.

We’ve talked about escalation of therapy so far in terms of triple-negative breast cancer: we’re giving immunotherapy, we’re giving antibody-drug conjugates. But I also wanted to mention that not all triple-negatives may need more therapy. We’re learning that if the tumors have these immune infiltrating cells known as tumor-infiltrating lymphocytes, we can actually test for these now. If they have a lot of these, these triple-negative tumors actually can have very favorable biology and may not need as much treatment. So there’s actually going to be a trial investigating that, where patients who have a lot of tumor-infiltrating lymphocytes may be spared harsher chemo.

We’re conducting trials where we’re using less anthracyclines in triple-negative breast cancers, avoiding chemo in very small tumors. And for patients who have germline alterations, BRCA1 and BRCA2, there have been several exciting trials that have looked at using PARP inhibitors and immunotherapy in place of the traditional chemotherapy. So these are some of the newer trends that are happening in triple negative breast cancer.

Any quick questions on triple-negative breast cancer before I move on to HER2-positive?

Jean Sachs, MSS, MLSP [00:40:11]

There’s not any specific triple-negative questions, but a lot of questions about if you are hormone-positive or HER2-positive or triple-negative, if there is a recurrence or if it becomes metastatic, can it change? Can the subtype change?

Maryam Lustberg, MD, MPH [00:40:26]

Yes, 20% of the time it can change, which brings up the point that it’s really important not to assume that it’s the same subtype of breast cancer and definitely have tissue biopsy confirmation of that recurrence. There are also times where what is thought to be a recurrence ends up not being a recurrence. So definitely tissue confirmation is really, really important.

Jean Sachs, MSS, MLSP [00:40:59]

And then there’s one triple-negative question, so I’m going to ask that and then we’ll go to the HER2-positive. This person’s asking why are these newer drugs only for stage II or stage III.

Maryam Lustberg, MD, MPH [00:41:11]

Really important question. It has to do with the recurrence patterns that we see in triple-negative breast cancer. In general, stage I triple-negative breast cancer does quite well without a lot of treatment. These are very small tumors. We tend to treat them with surgery first and then they typically get a shorter course of traditional chemotherapy.

It’s these stage II and stage III breast cancers that if we look at survival curves and recurrence curves, those tend to have the highest levels of recurrence relative to stage I. This is why the standard of care has been that if it’s stage II or III, we want to do that preoperative type of approach so we can actually see if your tumor is responding. And if it’s not, then we can do additional therapy at the back end.

The concern for treating stage I tumors like this is that, since they do well regardless, it may end up being overtreatment and additional toxicity for really no benefit. So that’s the reason.

All right, HER2-positive breast cancer, and there are lots of advances in HER2-positive breast cancer.

We talked so much about clinical trials and scientific discovery, and I think out of all the breast cancers that I’ve covered, the story of HER2-positive breast cancer is truly a story of amazing human innovation and discovery. When we discovered Herceptin [trastuzumab], which is an antibody that targets this HER2 protein, it completely revolutionized treatment. We used to talk about HER2-positive breast cancer as the worst, most aggressive type of breast cancer. And now it has become really truly one of our most well-treated and well-behaved types of tumors as long as it receives HER2-directed therapy.

In that plot you see a series of milestones. There have been a lot of amazing drug developments in this area and we will cover some of these. When I see HER2 positivity in a tumor, this is one of those funny things oncologists say, but I actually feel great excitement that I have wonderful drugs to give my patient.

The theme with HER2-positive tumors is that we’ve learned to do much less harsh therapy. We used to give a lot of Adriamycin [doxorubicin], which is part of the class of anthracyclines. We would give Adriamycin and then we would give Herceptin, patients had higher rates of heart failure. But what we learned through dedicated clinical trials is that we could eliminate the anthracyclines and patients would do just as well and have less cardiotoxicity. So this has become really the standard of care.

My boss, Eric Weiner, was one of the pioneers who really asked the question that for the, these really small stage I, HER2-positive breast cancers, we don’t really need multiagent chemo. We could pick one chemo, Taxol or Taxotere, combine it with Herceptin, and the vast majority of patients can do really well with this much shorter, much less toxic regimen.

The third piece has been that even for stage II and stage III breast cancer, we’re beginning to kind of get away from adding too much chemo on the front end. Standardly we give Taxotere plus carbo plus Herceptin and Perjeta [pertuzumab]. There’s mounting evidence that we can eliminate one of the chemos, known as carbo, and patients can do just as well.

Maryam Lustberg, MD, MPH [00:45:32]

There are times when patients do need more therapy. For patients who don’t have that complete response to preoperative chemo, similar to the triple-negative breast cancer story, the targeted drug known as Kadcyla or T-DM1, giving 14 doses of this drug for 3 weeks after surgery has been shown to dramatically improve the number of patients who are able to achieve a long-term cure. In addition, we are adding additional targeted therapies to drugs like Kadcyla and Tukysa, or tucatinib, is a smart oral targeted therapy that’s currently approved in metastatic breast cancer, but now we are testing it as part of a clinical trial in early-stage HER2-positive breast cancer. In this clinical trial, known as Compass-Residual Disease [CompassHER2-RD], half the patients get Tukysa in combination with T-DM1 and half the patients get simply the standard, which is T-DM1. One of the reasons that the Tukysa story is important is that it’s a small molecule so it can potentially penetrate the brain tissue much more effectively than T-DM1 and Herceptin and help prevent or reduce the chance of future brain metastases.

You will hear a lot of headlines in this year’s ASCO, they’re calling it ASCO Breast because there’s going to be a lot of headlines. And one of the headlines that you will hear about is — I introduced the idea of the antibody-drug conjugate, or ADC, therapy — this was an early-stage, HER2-positive neoadjuvant therapy that that used a HER2 ADC. And what they found is that with this HER2 ADC, known as Enhertu [trastuzumab deruxtecan], when given upfront, compared to traditional preoperative, HER2-directed chemo approaches led to higher complete pathologic responses. So we’re going to see the full data in this year’s coming ASCO, which is going to be in a few weeks.

The theme that I hope you can also take away with you in terms of new emerging therapies is that we’re going to see a lot more ADC therapies emerging in this early-stage breast cancer space.

You may have heard about HER2-low because we’ve been talking a lot about that in the metastatic breast cancer space. So I wanted to make sure to touch on that.

We’ve talked about these antibody stains and immunohistochemistry that we do on tumors. And you can see on the left-hand side, if a tumor has a lot of HER2 protein, it’s going to stain dark and brown as you can see on top. If it has no staining that’s at the bottom, nothing picks up. But a good proportion of tumors that are hormone receptor-positive or even triple-negative breast cancer actually can pick up low levels of HER2. And these are known as HER2-low. And there’s even a new category now known as HER2-ultralow, which is just a tiny bit of staining.

So I wanted to at least introduce this category with the caveat that right now we’re primarily using HER2-low to direct patients in the metastatic setting. We’re not ready yet to use this as a biomarker in early-stage breast cancer. But one of the rules of breast cancer talks is that your talk is outdated within 6 months. So stay tuned because I think this is a rapidly evolving area, but right now the takeaway is know that the HER2-low category exists.

You can find out what your HER2-low category is. You just have to find your initial pathology report and as long as it’s 1+ or 2+ by immunohistochemistry and it’s FISH negative, you’re actually HER2-low. It’s fine to know the information but know that we’re not currently acting on that information.

Any questions here? I want to make sure I’m answering the treatment questions before we move on to anything in symptom management. Jean, anything you wanted to ask right now?

Jean Sachs, MSS, MLSP [00:50:36]

I’m not seeing any HER2-positive questions. There are a lot of questions, so why don’t you keep going and then we’ll just run through everything.

Maryam Lustberg, MD, MPH [00:50:48]

I wanted to really take a moment to highlight that the right therapy is critically important, but to make sure that you tolerate that right therapy, we want to make sure that we’re taking care of all of you and trying to minimize toxicities as much as possible. The two go hand-in-hand, it’s not either or, it’s “and” and “and.”

I wanted to highlight some exciting developments in early-stage breast cancer looking at optimizing metabolic health. The BWEL study was over 3,000 patients with early-stage breast cancer who were overweight or obese, and they were randomized to targeted coaching for weight loss. Lots of patients were able to lose some weight, and there were important markers of improved metabolic health. So you’ll be hearing just continued importance of optimizing metabolic health in breast cancer survivorship.

But how do we do that is the issue. I think we all have busy lives, and it can be very hard to know exactly what type of things to eat. In general we talk about a plant-forward diet, less processed foods. This is a study that I’m leading with my colleague, who is a PhD-level dietician. So this study is available free of charge for any of you who may be eligible, you can just scan the QR code and it’s free virtual nutritional support for you.

The question of breast cancer and pregnancy. For the first time we had the landmark POSITIVE study readout in the last 2 years, which showed that pregnancy after breast cancer is possible and safe and that even if you’re on ongoing endocrine therapy and you haven’t finished your 5 years or 10 years of therapy, if you’ve taken it for a few years, you can have a 3 month washout, attempt pregnancy, have your child, and then return back to endocrine therapy. We finally have prospective, global data on this approach.

There’s a lot of attention now on GLP-1 agonists and weight loss drugs. Even though patients with breast cancer were initially excluded from GLP-1 agonist clinical trials, I do want to say that there’s a growing body of retrospective data that is suggesting safety in breast cancer survivors. So definitely, based on your metabolic health needs, have that discussion with your doctors in terms of if you need to use pharmacological therapies. We do not currently have any contraindications in breast cancer.

Jean Sachs, MSS, MLSP [00:54:08]

I’m glad you mentioned that because a question just popped up, so thank you so much.

This’ll be just questions all over the place. The first one is: What if you are ER-positive and HER2-positive? So you have two different types of breast cancer. Is there anything new or is it the combination of everything you talked about.

Maryam Lustberg, MD, MPH [00:54:30]

We initially target the HER2 pathway more strongly. So initially you would get the right type of chemo-HER2 combination, and then for your maintenance therapy, introducing the endocrine therapy agent, whether it be tamoxifen or aromatase inhibitor.

CDK 4/6 inhibitors, we do not have data for early-stage HER2-positive breast cancer, but we do have data now for HER2-positive metastatic breast cancer. So stay tuned, but right now endocrine therapy alone for what we call triple-positive cancers.

Jean Sachs, MSS, MLSP [00:55:10]

There are a lot of questions about who is eligible for CDK 4/6 after their primary treatment, what stages. And there are some people here that have lobular breast cancer, and I think there might be confusion. Is lobular a subtype or is it something else? So if you could do both of those.

Maryam Lustberg, MD, MPH [00:55:32]

Sure. There are many different histological subtypes of breast cancer. Ductal is the most common histological subtype. So that’s a pathologic diagnosis in terms of where the cancer cells originated: Was it the milk ducts or was it the lobular tissue?

In some ways, yes, lobular cancer is a histological subtype, but in terms of the traditional prognostic subtypes it typically falls in the luminal A, luminal B, hormone receptor-positive. But there are exceptions. There are even times, rarely, where we see triple-negative lobular cancers or we may see pleomorphic HER2 positive lobular cancer. So great question. But I think the biological subtypes that I presented apply to all histological subtypes. In general, all the treatments that I talked about, lobular cancers tend to need less chemotherapy but really benefit from that smarter, endocrine therapy, targeted therapy approach. Even though the original trials did not break things down by histological subtype, we know that lobular cancer tends to really benefit from endocrine therapy.

In terms of eligibility for CDK 4/6 inhibitors, there are wonderful tables that I can maybe share with the organization to pass out to patients so that you can see clearly. But I think the simplest way of describing it is pretty much at this point between the two drugs, if you have lymph node-positive breast cancer, you’re eligible for one or both of the CDK 4/6 inhibitors. If you are lymph node-negative and have one additional high-risk feature — that may be that you have a high proliferation rate in terms of a high Ki-67 or you have a high grade tumor, like a grade 3 tumor, or you have an Oncotype Recurrence Score of 26 or higher — you are eligible for Kisqali.

Jean Sachs, MSS, MLSP [00:58:02]

OK. So it sounds like you should have a conversation with your doctor about this.

Some people are confused when you talk about a germline mutation. Can you explain?

Maryam Lustberg, MD, MPH [00:58: 21]

Yes. So by germline we talk about what makes you, you; what makes Jean, Jean. What is the genetic makeup. These are building blocks that get passed down from parent to children. They are genetic factors that get passed down. They’re inherent to you, it’s what makes you, you.

Classic hereditary breast and ovarian cancer syndromes tend to be positive in BRCA1, BRCA2, PALB2, but there are others as well.

But when we talk about tumor genomics, this is known as somatic tumors, tumor genomics. This is not your genetic material. A tumor is a foreign entity in your body that has learned to live inside you. So when we talk about tumor sequencing or interrogating the tumor, this is different than your genetics. This is particular building blocks of the tumor that makes the tumor grow and proliferate.

Jean Sachs, MSS, MLSP [00:59:25]

Great, thank you. We always get that question. It’s good to just say it over and over again. I appreciate it. And similarly, we get this question a lot also. If you are triple-negative and you’re a BRCA1 carrier are you more likely to have a recurrence?

Maryam Lustberg, MD, MPH [00:59:44]

In terms of distant recurrence, your chances of distant recurrence are very much driven by the stage of the triple-negative breast cancer, how well your response was to the preoperative treatment, if that’s what you ended up having. Having the BRCA alteration does not necessarily make you have worse prognosis. In some ways it may make it better, because selected patients are also candidates for adjuvant PARP inhibitors in that setting.

But in terms of local recurrence, you have a choice in terms of whether you choose to have bilateral risk-reducing mastectomies or you choose to do intensive surveillance with alternating mammogram and MRI. For those patients who elect to keep their breasts, yes, having those hereditary alterations, like BRCA1 and BRCA2, does elevate your lifetime risk of a new breast cancer developing even after definitive treatment for triple-negative breast cancer.

Jean Sachs, MSS, MLSP [01:00:52]

You didn’t talk about Nerlynx, but could you talk about Nerlynx versus Kadcyla?

Maryam Lustberg, MD, MPH [01:01:01]

Nerlynx is another smart oral targeted therapy, Nerlynx or neratinib. The ExteNET study studied high-risk patients, and a year of oral targeted therapy was shown to reduce recurrences as well as reduce the incidence of brain metastases. The idea is that these smart, HER2-targeted therapies have better brain penetration.

One of the things that can happen in breast cancer is that data continue to evolve. So sometimes we don’t know where therapies might fit in the context of new therapies. However, for certain high-risk patients who are not eligible for oral targeted therapy on residual disease, I’m absolutely using that and having a discussion with my higher risk, HER2-positive patients about the potential benefits of Nerlynx in that setting after they have completed the year of HER2-directed therapy.

Jean Sachs, MSS, MLSP [01:02:11]

We’re just going to do a few more questions because I’m sure you’ve been in clinic all day.

There’s a couple people who I think are concerned now because they say they never got an Oncotype score. They may have gotten it and don’t know it, but are there certain people that just are not eligible for Oncotype DX?

Maryam Lustberg, MD, MPH [01:02:32]

The extremes, and I don’t want to talk about anybody as an extreme, so forgive that terminology, but if you had a very, very small tumor that was grade 1 — which grade is different than stage. Grade 1 tumors tend to be very slow growing. These really small, few millimeter tumors that are grade 1, we need the tumor to be at least half a centimeter. So it’s a discussion with your oncologist in those settings whether we want to send it on these very small tumors.

Similarly, if you have stage III hormone receptor-positive breast cancer, we’re beginning to use Oncotype testing a little bit more in this setting, but it is sort of at our data limits because the RxPONDER trial really focused on patients who had up to three positive nodes and not more. There is going to be a larger study mounting for these higher anatomic risk patients and using Oncotype in decision making.

But I would say if you had very early stage I or a stage III breast cancer, you would not have officially met criteria for Ocnotype

Jean Sachs, MSS, MLSP [01:03:42]

So don’t be panicked. You can always ask your doctor, it might be in your portal and you don’t know it. I’m going to ask you just two more questions.

There is a question saying, what if you’re very ER, PR positive. Like you’re just exceptionally high. Is that good? Bad?

Maryam Lustberg, MD, MPH [01:03:59]

It’s exciting. It’s good. These are weird things oncologists say, but having a strongly ER-positive tumor means two important things. One, these tend to be our well-behaved slow-growing tumors. They tend to have just the best prognosis. And two, they derive a lot of benefit from our endocrine therapy agents. So two bonus areas there.

Jean Sachs, MSS, MLSP [01:04:28]

Great, that’s good. Because sometimes people get worried like is it good or it’s bad. I’m just going to ask this because it concerns me, but that someone is asking, is it true that some grade one breast cancers can be resolved naturally by the body?

Maryam Lustberg, MD, MPH [01:04:43]

We’re beginning to study this and this is not permission to not go out there and treat grade 1 tumors. But I think it’s an important question.

Most of this work has been done in ductal carcinoma in situ. So the COMET study looked at potentially observation on endocrine therapy and not doing surgery. But I think what you are asking is could there be grade 1 tumors that are small, so indolent that they may not need a lot of therapy and perhaps we’ve been overtreating them. Right now we’re not smart enough to know which grade 1 tumors are in that camp, which grade 1 tumors are in the camp that need at least a little bit of therapy. But I think this is going to be changing. Don’t go stopping your endocrine therapy now but know that we’re actively working on being smarter about picking out the bad players from the good players. We are committed as a breast oncology field to answer your very important question, but we’re not ready yet.

Jean Sachs, MSS, MLSP [01:05:52]

Great. I want to thank you for both showing de-escalation of treatment, new treatments, and also having a couple of slides on nutrition and other things that you can do to increase your health and hopefully prevent cancer from coming back.

Session 2: Psychological impacts of new treatments, testing, and the fear of recurrence

Celeste Vaughan-Briggs, LCSW [00:00:08]

Welcome. I am Celeste Vaughan-Briggs, an oncology social worker.

This topic is so important. It touches so many lives. Once you have heard those first words, “You have cancer,” the worry starts then for many people. We want to talk about what that journey and trajectory looks like and some strategies for what helps, much of which you already know and are doing.

What we’re going to go over today is a little bit of data, not too heavy on the data aspects. Our presentation last week was so wonderful with so much good information, and I couldn’t follow that up if I tried. But I do want to talk a bit about the psychosocial data and talk about the fear of recurrence using three buckets or categories. They aren’t the only buckets or categories, but just three areas that sometimes can make it easier to organize how we think about these issues. We’re going to talk a little bit about some strategies, and then we’ll take some questions.

In social work and in helping professions, there is a technique and tool called a community meeting. It comes out of Dr. Sandra Bloom’s work with folks impacted by trauma. And we’re going to do a modified community meeting. Basically, who in your circle can you ask for support and part of the process of identifying how we feel, identifying a goal we want to achieve, and who in our community can help us. You could potentially put that in the chat, or you can think about it to yourself. But how are you feeling right now? What do you notice in your body? What thoughts are coming through your mind? What are those feeling words that you’re associating? So you can ground yourself into here and now. What’s your goal for tonight? Is it to get some information that you find relevant? Is it to maybe connect with someone in the chat? Is it to see yourself as part of a bigger community?

And then who can you ask for help? You can ask all of us for help. You can ask in the chat. You can ask in Q&A. You can follow up with other programming that LBBC has. Maybe you can even turn to friends and family in your circle of support. You can ask for help. That’s our little community meeting to get started.

Last week the presenter really went into the deep data. I just want to give a general overview. We know that breast cancer is one of the most highly diagnosed cancers in the United States. This data is from the American Cancer Society and their estimates.

Knowing that you are part of a growing number of people who are impacted by this disease, it’s a little six in one hand, half a dozen in the other. You are part of a larger community of folks who have navigated challenges and difficulties, treatment decisions, and have come out the other side through survivorship with support from family, friends, organizations. But it is a club you did not want to join. You did not want to hear those words. And knowing that others are going to be introduced into that experience can feel a little challenging. It can feel both that I’m part of a community but that I really don’t want to be part of that community, and that’s OK, that paradoxical tension. But I show that to say that there are others like you.

Celeste Vaughan-Briggs, LCSW [00:04:48]

The other piece about this, and the presenter last week really did go into this from a medical framework. And I am not presenting this as a clinician, I am just giving an overview that there have been great breakthroughs in science. Where we have come from to where we are, and this particular data is from the American Cancer Society, shows from 2014 to 2020, that survival rates have continued to improve for all cancers, breast included. So even though we know there are more people being diagnosed, more women being diagnosed — and some men — we know that people are surviving and surviving longer. And you’re in that greater circle of support.

That framework, sometimes, for some people — and all of these strategies do not work for everybody so you have to see what works for you — but for some individuals, that context is helpful to ground them when moments of fear, distress, worry, and anxiety happen. It can be helpful to see yourself as part of a larger story of survival, survivorship, and of science and technology moving forward, and to see yourself as part of a community that has resiliency and strength.

Hopefully that is helpful for some folks. If it is not, you can leave it where it is.

Let’s talk a little bit about cancer-related distress. For those of you who have been through the treatment experience — there may be some caregivers on the webinar as well. You may have gotten questions at some point in your journey, either from a nurse navigator, a social worker, a nurse. You may have been handed a little thermometer or you may have been asked a series of questions about how you were emotionally feeling and psychologically processing what was happening. They were trying to identify your distress.

We know that a cancer diagnosis is one of the most stressful experiences that a person can have, even when the news is hopeful, when there are treatments identified, when there’s curative intent, as they say. Nonetheless, the psychosocial impact of a cancer diagnosis really does hit all aspects of life. These distress symptoms, or distress areas, are things that clinicians or other members of the care team will ask about.

What are they? They’re commonly identified and expressed as emotional experiences. Fear, worry, and helplessness? Absolutely. That is a human condition. Sadness, feeling regret, longing for the world as it was before you heard those words, sadness of being part of this larger community that you did not want to be, which can be particularly challenging — although it’s not worse or better, but challenging in a different way — for our survivors who also have genetic mutations. Sometimes there are family history stories that can also impact our emotional experience and distress.

Depression, anxiety. Depression and anxiety are psychological concepts, it’s sometimes helpful to think of them along a continuum. One end of a continuum may be a clinical diagnosis given by a psychiatrist, a psychologist, licensed professional counselor, marriage and family therapist, social worker, or other clinician where you meet criteria for a DSM-V diagnosis. But often it can be pieces of that criteria. You might not fit all of those, but that does not minimize your experience of having impact to your activities of daily living, sleep disruption, appetite disruption. You may be at one end of the continuum, not necessarily being diagnosed with a mental health condition by a clinician, but you’re hurting, you’re impacted.

Celeste Vaughan-Briggs, LCSW [00:10:10]

Anxiety is similar in that regard. Again, along a continuum. Your activities of daily living — sleep, eating, concentration — those can be impacted, those distress symptoms. Concerns about the illness and the treatment.

Feeling isolated from family and friends. This is very common. I talk to people every day. I talk to newly diagnosed folks. I talk to people in survivorship. People a little bit further in the journey, sometimes as they are reconnecting to a larger community of support, will talk about how in the beginning it was really challenging because maybe they didn’t have anyone in their cohort, in their family, in their friend group that had ever gone through it. So they felt quite alone. That can increase our feelings of distress.

Frequent thoughts of illness and death. Now listen, being diagnosed with an acute or chronic or serious illness and reckoning with our mortality is part of the human condition. So I’m not pathologizing that. There’s no right or wrong about that. However, when someone sees a mental health professional or when we’re assessing for the level of distress, how impactful it is or disruptive to your daily life are the things that we really want to know about because we want to try and help get you the support that we can.

What does the research tell us about the impact of a cancer diagnosis?

These things can sometimes amplify our feelings of distress and sometimes they can mitigate our feelings of distress depending on our own circumstances. Life is turned upside down, disrupted routines. We know that often women who are diagnosed function in so many roles in their households, in their employment, in their jobs, in their family group, in their friend group. Now having, on top of doing the laundry and getting the kids to practice and getting dinner and going shopping, now I have to fit in medical oncology and radiation oncology and, “Boy, I have to get this scan and they could only fit it in for me at 2 o’clock in the afternoon when that means I have to take off work again. And now I have this report I had to have done.”

That disrupted routine can amplify stress, it can impact our cycles, whether that’s sleep, having those moments where you had a chance to play the latest little game on your phone just to decompress. Well you don’t have that time anymore now because you have to keep going, going, going. The physical impact of disrupted sleep patterns, nutrition being impacted based on the treatment that you’re having, new health issues that pop up as a result of the treatment or post-treatment, which is something that the clinical team really does need to pay more attention to. They’re getting somewhat better. But that is something that I hear from folks all along the continuum of care, that they wish the care team paid more attention to post-treatment side effects. That also increases the level of distress because it’s not talked about. Is this a normal post-treatment side effect? Is this something new? Is this something I should be concerned about? That can amplify that fear of recurrence.

The emotional impact, which we’ve talked about. If there have been periods in our life where we have struggled in the past or have overcome in the past and found strategies and tools to deal with challenging issues or concerns that have come up in early childhood or young adulthood or later in life. Having a new, disruptive event — again, one of the most stressful things that you can have happen — can amplify existing distress, and there may be new tools that you have to add to your toolbox in getting that support. And then changing roles, I alluded to before. That unpredictability impacts our households. If we’re caring for children and caring for elders, those types of issues really can amplify the distress of an individual. And that can be while you’re newly diagnosed, in active treatment, and well into survivorship because it will look different at different stages. And often when you are in your journey of survivorship, when new events happen or new fears or worries pop up, sometimes people feel transported back to a previous era. They are reliving it, not in the same way as a flashback, but they are reexperiencing what that is and that can amplify distress.

Celeste Vaughan-Briggs, LCSW [00:15:44]

Let’s talk about defining fear of recurrence, which is actually in the literature. There are lots of journal articles if you do want to dive into it. Psychosocial oncology research is tailored to try to identify these issues, to get a handle on it so we can think about how do we best come alongside and support folks.

This is an interesting article. It’s a little bit older but not too old. I just want to highlight that definition:

“Fear of cancer recurrence (FCR) has been described as the sword of Damocles that hangs over survivors for the rest of their lives. FCR is usually defined as ‘the fear or worry that the cancer will return or progress in the same organ or another part of the body.’”

Associated with that can be increased impairment in functioning, increased psychological distress, and stress response symptoms that can lower the quality of life. It is a big deal, and we want to talk about some ways and strategies to address it. But I do want to emphasize this is real, it’s an important topic, it’s being researched, and just to help you feel seen.

Remember I talked about those buckets? Let’s go back to the buckets because there’s a million buckets of distress and worry. But I want to talk a little bit about the life bucket and that fear of recurrence in the life bucket.

There are so many decisions that we make on a daily basis, some of which end up being rote, under the radar, we don’t think about, and they become part of our routine. But when we have that disruption, we have to think harder about the next decision. Also, we worry or wonder about previous decisions that we’ve made. What are the impacts of those decisions?

And we are looking for some predictability and control. To normalize that is a human condition. Looking towards predictability and control in situations in which we feel are out of our control is something that we do. There’s nothing wrong with you for aiming towards that. That is absolutely understandable and common.

In these types of situations, and as medicine has evolved and they talk about patient-centered and patient-driven care and shared-decision-making models, you might have heard some of this from some of your clinicians. Sometimes it’s presented as, look how great we’ve come. We we’re moving away from a strict patriarchal medical model where a doctor says, do X, Y and Z. And the patient says, “Yes, ma’am!” “Yes, sir!” And just does it. We’re more in a collaborative relationship and we are moving together towards addressing the pathway to care.

That’s true, but in some ways it can feel overwhelming — all of the alternatives and uncertainty. Did I make the right choice? What about the consequences of the choices that I made? The doctor gave me an option between A and B, I chose B and now I’m having long-term side effects. Maybe if I had chosen A that would have gone differently. We have a lot of counterfactuals. Again, very common in cancer, but also in other medical conditions and acute care conditions. But it’s also common in life.

Celeste Vaughan-Briggs, LCSW [00:20:32]

What strategies may be helpful? This will be something to think about. When you have made decisions in your life before, when you have approached it making the best choice you could with the information and resources available to you at that time, you did the best you could. To try to work through a process — a therapist can be very helpful with this, sometimes they do techniques such as cognitive behavioral therapy to really get in the nitty gritty of your thought process — to come to a place where you are able to work towards a more helpful homeostasis when reviewing past decisions related to the cancer diagnosis or choices you’ve made, which facility to go to, etc.

Our second bucket. This bucket is a bucket I walk alongside; the care team drives this bucket. This worry category is the diagnosis itself and the medical issues. It’s similar to the life category and the decisions and uncertainty, but it’s a little bit different.

I want to talk a little bit about the complexity that is compounded in modern medicine. I want to empathize and give you all of the props and kudos and just all of my love and support because it is so challenging to sit in the room and hear all of this information spoken in a different language, medicalese, as it pertains to you. I have sat alongside folks who are also clinicians or nurses or have other medical training. When it’s you, you just can’t process it in the same way.

That bucket of worry can also impact your fear of recurrence and that uncertainty because it is amplifying: Did I make the right choice? Is my team making the right choice? And sometimes that’s because we’re all human beings. Doctors aren’t perfect. Nurses, social workers, none of us are perfect. And the complexity can be compounded by the healthcare system’s inefficiencies, challenges, things that we just don’t do as well as we could. Things that we’re striving to get better at. Siloed communication, doctors or care teams asking you the patient, “So which treatment is this?” Which doesn’t necessarily inspire confidence. And you know why they’re doing it? It may be their verbal cue to themselves, to familiarize themselves, sometimes they do a teach back to try to gauge how much you know about the process. But sometimes there can be a little tension in the communication of that. That can certainly be a concern.

Barriers, and this is what we’re going to talk a little bit about, that worry category of society and community. There can be these barriers that impact how frequently we can get back to see our team and what’s going on in the larger context of the world, and that can impact how we interact with our teams and increase and amplify our fear of recurrence.

I want to talk about the bucket of community worry and societal worry. I’m going to put on a little teaching hat. I’m not getting into all of public health, but there is a particular theory, it’s often used in public health, this concept around social-ecological theory, which was partially developed by Urie Bronfenbrenner.

Celeste Vaughan-Briggs, LCSW [00:25:18]

You can see that very big circle that has ever smaller circles in it. It puts we the individual in the center of these concentric circles, these other areas of influence and support that are mutually influential. We are individuals, but we are connected to our finances. And the physical impact of the diagnosis, that impacts how we work alongside friends and colleagues. How socially engaged we are in our interpersonal relationships. Are we connected to larger organizations, either as an engagement strategy, in a helpful way like LBBC or other organizations? Maybe there are other opportunities for you to engage, to feel connected, and to channel your worries and concerns. Are we connected to our community? Where we live, where we work, where we play. Which gets to the factors such as the social drivers of health.

You may have also seen that or gotten asked questions about that in your care journey. The social drivers of health, a public health concept but is increasingly adopted across many health systems to get at the important factors that impact an individual’s situation beyond just the physiological and disease factors, and knowing and saying that it’s important. Do we have access to healthy food? Are we experiencing financial toxicity as a result of the diagnosis? Are we having transportation barriers? Are we depressed? Do we have other impacts? Is it difficult for us to obtain our medication due to those financial factors? It’s important to ask about that. That can help a care team.

Now, social workers, we aren’t the only ones that ask these questions or try to address the issues that may come up. Your nurses, your nurse navigators, doctors, other clinicians, and even some health system’s medical assistants are asking some of these questions. It’s to say, can we help connect to community health workers, to someone who can help address this worry. This is difficult sometimes for the care team. Sometimes the cancer diagnosis and the things that come from that are super important, yes, but so is my rent just went up and now I’m going to miss work and I don’t know I’m going to make my rent and I’m worried. My child is now starting to do well in school, and I’m worried with all of this focus on these other issues, something’s going to happen and that’s going to take them off track. That is important, and your care team should respond to that.

Please, if you are asked those questions, answer as honestly as you feel you can. If you already know or can identify those issues, let them know. Let them know and then maybe we can try and address it.

Celeste Vaughan-Briggs, LCSW [00:29:35]

Let’s say what helps. Are we looking at a glass half full or a glass half empty? Sometimes it’s both. That paradox is OK too.

Who can you share your frustrations with? What works for you? When we’re thinking about psychological and emotional wellness, make an inventory of the tools in your toolbox, how you’ve gotten through difficult times in the past, because you surely have. What family and friends are a part of your network that are more helpful to you? Do you have support groups in your cancer center or outside in other organizations like LBBC? Are you connected to complementary medicine, which can be a helpful adjunctive way for folks to calm themselves, address anxiety. Things like acupuncture, yoga, massage, Reiki. Sometimes they’re cost-prohibitive, but sometimes there’s opportunities and organizations that can help.

Getting supportive counseling. Therapy isn’t for everybody, but even if you don’t think it’s for you, maybe talk about it with a trusted friend or someone from your care team because there may be some options that are more acceptable to you. Sometimes they have brief intervention therapies — three sessions, six sessions — to really focus on something specific that’s more worrisome than not. Some care teams and facilities have educational programs around the fear of recurrence. Some have ongoing support groups, and that can be helpful, to be in that community of support.

Some of this will be based in your cancer center, and some may be more in the community. Some may be connected to your insurance, and there are some services that are free because they’re offered by community organizations or another advocacy groups.

Check in with your nurse navigators. Nurses are awesome! I love our nurses, and I love our nurse navigators and our lay navigators. They’re a wiz at finding resources, as well as your social work team.

Communication. And it’s hard because sometimes it’s hard to find just the right person that you feel like talking with about the diagnosis or changes in treatment and symptoms. But at the very least, please communicate to your care team because there could be referrals or resources we can connect you to. And if we don’t know, it’s going to be difficult to address those concerns.

If you need professional help, or just the things that might not be directly cancer related but could be long-term impacts, if you’re still dealing with fatigue or things like that. Can you get some paid or non-paid help at home for those mundane tasks, you know like cleaning and yard work, et cetera?

Psychoeducation courses. At Jefferson we have our patient support welcome center where we offer a whole variety of different programming. You don’t have to be a Jefferson patient, it’s usually free. Some things are online, some are hybrid, some are around particular topic areas. Sometimes that can decrease our worries and fears of recurrence because we’re getting the information. Seeing ourselves as problem solvers and skill builders, that can be in a variety of different settings. Again, supportive therapy, family therapy, couples, sometimes, in those integrative therapies.

I also want to highlight that there are some national resources. We don’t want people to suffer in silence and suffer alone. For some people the fear of recurrence and psychological distress is very serious and can trigger a mental health crisis. We want you to be able to make sure that you get that support.

These are some crisis hotlines information and text crisis hotlines, some other cancer-specific resources and community, and as always, our lovely LBBC, as well as some other organizations.

Here are some specific population-focused resources that offer therapy, sometimes programming, psychoeducational options. So those are things also to look at.

There are a few app-based options that can be tools that can be utilized to help you in the moment. Again, it’s not a magic wand, but they can help you in the moment to be able to bring the temperature down as they say, to stop, breathe, and think, which is one of the apps. Calm, which I love. Headspace and the Mindfulness App. These different tools that can be helpful along your journey.

I’ve gotten to the end of my slideshow, and that is my contact information. I will stop sharing now and see what questions we have. Thank you so much.

Lynn Folkman [00:35:21]

Thank you so much, Celeste. That was a great presentation. So many things resonated with me and, I am sure, Shannon as well.

Shannon has now joined for the Q&A portion. So Shannon, if you would take a couple moments to introduce yourself to the audience.

Shannon Gottesman [00:35:40]

Yeah. It’s such a pleasure to be here, and, Celeste, thank you for sharing your time and such a wonderful presentation for all of us.

I am so proud to be a Living Beyond Breast Cancer Young Advocate, as part of the newest cohort. I partner and work with 20-plus incredible humans who have been such a huge part of my journey and my chapter here. And so thanks to Lynn and everyone at LBBC.

I was diagnosed just 2 years ago in April of 2023 with stage IIIB, ER-, PR-positive, HER2-negative breast cancer. I went through 16 rounds of chemo, double mastectomy, lots of nodes, 25 rounds of radiation. And as I was sharing with Lynn a little bit earlier, I am now in the height of my hormone and endocrine therapy of chemically induced menopause and dealing with two to three different medications. I had another surgery just a few weeks ago, so this topic has meant a lot because for me I’ve been very open in that survivorship has almost been harder — I don’t want to say harder, let me just use my words wisely here — has been really challenging from a mental health perspective.

Thank you. I just saw Alexa put up a story I had written recently.

I really just chugged through goals at a good pace and I moved quickly. I could just move through, knowing that there was the next step of active treatment, and when I really had to sit with things and pause, that’s when I really had, not a hard time, but I really had to feel these feelings and figure it out. And I see Celeste nodding there and Lynn too.

LBBC has become a huge part of how I’ve been able to cope and making connections. So for me it’s been, now that I’m trying to focus, I think there’s also so much emphasis on the physical aspects of how you cope. Don’t eat sugar, don’t drink alcohol, do this, do that. And all these do’s and don’ts about what you can be doing for your body. And I think there’s a lot less talk, particularly sometimes with your own care teams, around the mental health aspects and resources. So I really had to go out there and piece together my team, and we could talk more through questions. But that’s my story.

I’m from Philadelphia, proud Philadelphian, but I now live in Pittsburgh. We are raising our family here, our two young boys. We also had a 2- and a 4-year-old when I was diagnosed, and that’s another part of my experience that I’ve been working with. And so hopefully that’s a good introduction and happy to answer some questions and be a part of tonight’s conversation.

Lynn Folkman [00:38:18]

Thanks so much, Shannon.

I think the first question, I’ll phrase the question that came in, but I certainly think this is so universal in so many ways. Shannon and I were talking about it too before we came on.

“While I look forward to finishing my 5-year course of Arimidex [anastrozole], how can I handle the anxiety over no longer taking an anticancer drug and suddenly feeling less protected and that fear of recurrence even stronger?”

Celeste Vaughan-Briggs, LCSW [00:38:52]

That’s such a great question and such a common experience.

First I’ll say to that question and those whom that may resonate with, that you are certainly not alone in that.

I think part of it is, it’s going to look a little bit different for everybody, but there is a strategy. I’m leaning a little on cognitive behavioral therapy, I’m putting my little therapist hat on because I do do that as well. But there is a piece called cognitive restructuring. Those are the scripts and stories we tell to ourselves that are running in the background. And that’s, in some ways, what worry is and anxiety is. It’s a script and a story of what you are telling yourself about what could happen in future events. Sometimes what is helpful is a process, whether that’s with a therapist, with your care team, with your loved ones, of developing an alternative, believable, fact-based story that you can also tell in script, you can tell yourself that will be as valid and as useful, that you can use in those moments of worry.

I broke down cognitive restructuring therapy in like 30 seconds. But in some ways that is one of the implementation tool.

It is usually most helpful if it is honest and holds both the uncertainty in one hand, that is real, as well as what other fact-based information you may be able to get from your care team. That the evidence shows that if I take it this long that this percentage really is helpful for me, and this is why my care team suggested that. But it has to make sense to you in your words too. Hopefully that helps.

Lynn Folkman [00:40:54]

Yes, and I think it just validates, like that is real. Like Shannon and I were talking about before, years ago when suddenly I was like, “I’ll see you in 6 months.” And I was like, OK, I guess I should feel good about that, but right now I just feel really scared. I know, Shannon, you had the same response. But thank you for that.

Shannon, do you want to take the next question?

Shannon Gottesman [00:41:28]

Yeah, we have, “Celeste, you really struck a chord when you mentioned finances. Most of the alternative treatment choices I’m interested in are not currently covered by insurance at all or maybe only partially. Cryoablation was a fabulous psychologically comforting and effective choice for me for the first time. I will choose it again but can’t get supplements paid for either. So can you speak a little bit to that, Celeste?”

And I’m happy to jump in as well just because I did use integrative oncology at my cancer center. Celeste, I’m happy to chime in after you.

Celeste Vaughan-Briggs, LCSW [00:42:16]

Yeah, I’ll make mine really brief because I really would want to hear your story too, that’s probably most resonant for the person who asked the question.

But I’ll just say, yes, it is a key piece of advocacy that we need to push insurance. Right now, what we have in the United States is an insurance-based healthcare system. There’s huge disparities. One with people not being able to even have access to insurance or having insurance that doesn’t cover all of the treatments. Even when certain treatments are covered, they’re cost-prohibitive because the percentages of reimbursement and patient responsibility.

It’s a huge piece of advocacy that I think we all have a voice in and not being siloed by ourselves. But also, check in with the nurse navigators, social workers, and care teams. Sometimes we have little tricks and ways to try and get around some things. That’s not really what it should be, equitable and open and accessible to all. But sometimes folks who have been doing this for a while have ways or organizations we can refer to. But I definitely want to hear your story, Shannon.

Shannon Gottesman [00:43:27]

Yeah, I think it’s all of that.

For me, I really wanted to seek out all the resources that I could early on in my diagnosis, just to understand what was out there. I was fortunate to be at a cancer center that’s also a research center. And so this integrative oncology has been a big piece of it.

They offer some free services there for your first month or 2, and then you could pick and choose what you could do through your own chapter and doing that. There were a lot of local organizations, so in talking with my nurse navigators, just as Celeste mentioned, there’s Cancer Bridges here in Pittsburgh and I know there’s been a whole scroll of a lot of organizations people have been mentioning in the chat, which has been really helpful.

I’m not one to reach out for help, but I really wanted to make sure I could understand what resources I had to help and think about that. To, me having all that integrative oncology and those things really did help with my anxiety. I had general anxiety prior to cancer, and so for me these were coping mechanisms and things that I could use to help me with that.

I would say I used those resources for not only myself but for our children and for caretakers. I think that it’s good to think about those relationships immediately around you. All of the integrative pieces and putting those teams together were really important for me and the team around me and my family who was supporting me as well.

Lynn Folkman [00:45:07]

Thanks, Shannon. I know I stumbled into a lot of things by accident, and I think, to your point, Celeste, it’s so hard when you need to piece it together. But sometimes that’s what you need to do. Get, say, a resource from my cancer center had resources. I was part of a clinical trial in mindfulness meditation art therapy that I literally stumbled into. They had a flyer in a hair salon of all places. But I know there’s Cancer Support Community, I know people have mentioned in the chat Unite for Her. There are different resources.

I know for me, meditation really got me through, and I continue that to this day. I know you mentioned other resources. I think Insight Timer is also another one. I don’t know if that was mentioned, but almost all of the meditations there are free. It’s piecing it together and finding what works for you. And sometimes that takes time, and not only does it take time, but it’s trial and error to see what that is.

Shannon Gottesman [00:46:22]

Lynn, we did talk earlier about that whole-person care and building a comprehensive team. For me, that was really important. It wasn’t just my care team and my oncology team. I really had to build out and figure out what resources meant for me.

Yoga was my saving thing. I found it again through the integrative oncology. I had this incredible yoga therapist who really changed my path. It’s an every day thing for me, similar to the mindfulness. But a therapist, a yoga therapist, and just figuring out what that comprehensive team means to you. What works for me and for Lynn might not work for you because it is so individualized and so personalized. But I think it’s so important to know that there are resources and just to think about that holistic part of this.

This is a great example. When I moved, I was pregnant and I was seeing the midwives. And they were wonderful for my pregnancy, pre-cancer. When I went back during cancer and post-cancer, the team I was working with was not as educated about tamoxifen and all these drugs, and I felt a little bit scared to be there with them googling like, “I don’t really know about this.”

So in a few weeks I’m meeting a new midlife specialist, OB-GYN, who’s now going to help me navigate all this menopause and all these new things. I just recognize like I’m not the average patient. I don’t want to use normal or average, but I’m no longer just going there for my annual. I am now dealing with a lot of different things and a lot of different thoughts and processes and things. And so I also just encourage you to keep thinking about that as you go through different phases.

Lynn Folkman [00:48:10]

Thanks, Shannon. Someone in the chat said “I needed anxiety drugs” and sometimes, Celeste, I know I did as well.

Celeste Vaughan-Briggs, LCSW [00:48:22]

And that’s a great point.

Several different cancer centers have, I mentioned this term, psycho-oncology or psychosocial support. There are psychiatrists and psychiatric nurses who specialize in working with folks who are going through or have gone through a cancer experience. There’s a lot of chemical things happening in your body when you are getting chemo, when you’re doing radiation, even with surgery only, a lot is going on so your whole equilibrium is off. It is OK.

There’s a lot of stigma around psychotropic medication, which we are working on. But it is absolutely OK to get assessed and take those medications if you need them. It may or may not be for a long period of time, but sometimes even just opening up the possibility in your mind. For some people the framework of “I may only need it for a little bit of time,” maybe makes it more accessible if it’s something that really has not been something open to them at that time. So it’s OK to look at it like that too. Everybody needs a little help sometimes.

Shannon Gottesman [00:49:40]

We joke, but one of my Breastie conversations on a text chain where we call ourselves Ativan Always because I do feel like even now there’s certain scanxiety times and times where I feel like you need that. And I think also speaking with your team about what other medications you’re taking depending on your subset and your subtype. Because some of this could interact, and they might make a different recommendation.

I changed my anxiety medication of what I was taking before cancer and am now taking one that also helps with hot flashes and helps with all these other things. And so I also was open to changing and being open to that. So I think that’s really important to mention.

Lynn Folkman [00:50:15]

Thanks, Shannon.

Another question that came in, and you actually touched upon this, Celeste, in your presentation. “I’m hoping to hear about specific things that reduce anxiety associated with having a genetic mutation,” when you were going through your presentation. “Doing all the surveillance can be empowering in a way, but I think the experience of living the rest of your life with these risks is so heavy.” Can you speak to that?

Celeste Vaughan-Briggs, LCSW [00:50:45]

That is such a great question. For some folks finding a community of other support. So FORCE [Facing Our Risk of Cancer Empowered], which is an organization. But finding a community of support and how folks manage that paradox of there is some quote-unquote — I’m carefully saying it — “certainty” in having that genetic mutation in terms of expectation and a schedule of when to have surveillance. But there’s so much uncertainty that comes with that. How do you both face that risk as well as live beyond or not all encompassing of that risk, which is the balance of dealing with anxiety anyway, generalized anxiety or very specific anxiety even up into panic.

And I think, Shannon, you mentioned scanxiety, which some folks do have almost an acute anxiety attack or panic response as their scans come up. So sometimes that may mean medication to help even out those highs and lows at particular times. It could be talking to your care team about what is the newest schedule. Is the schedule that you’re on for surveillance the most up to date? Does that work for you? Does that not work for you? Can you cluster? Do you want it spread out somewhat differently? What can your team tell you about the newest and latest and how can that work in your life and schedule and how you’re processing it to give you a little bit more predictability and control, if that makes sense? So hopefully that came up with a few tips.

Lynn Folkman [00:52:52]

I’m going to do a next question, and then I’m going to turn it over to you, Shannon, for another question. Is it normal to be jealous of all my friends who never had a health concern ever? I feel terrible feeling this way, but I feel that they think I’m crazy if I even express that.

Celeste Vaughan-Briggs, LCSW [00:53:11]

That is very, very common. And that means you’re human. You and a couple other billion people on the planet probably had that thought. I think that is part of the human condition. We process our own emotional experience and understanding of the world vis-a-vis our interpersonal relationships. Remember that social-ecological model, little schematic I had up there. So you’re going to see yourself in relationship to others. If you process through that, give yourself some grace and some kindness for being human and feeling what you feel. If it becomes bothersome or disruptive to your interpersonal relationships, you may want to sort that out either with that person or with a therapist. Hopefully that helps.

Lynn Folkman [00:54:08]

Thanks, Celeste.

Shannon, next question.

Shannon Gottesman [00:54:12]

Yeah. “My Oncotype test came back with a score of 57 after mastectomy, which means there is a higher risk of recurrence. It has been a year post surgery and chemo. I worry about that number for recurrence. I feel like I’m at a higher risk. The thoughts can be debilitating.”

Celeste Vaughan-Briggs, LCSW [00:54:30]

Thank you so much for sharing your journey and where you’re struggling with that. The whole issue of newer science and technology, and that Oncotype score. Is that more helpful or less helpful or more hurtful to individual? And sometimes you can’t put the genie back in the little Aladdin’s lamp. Once you know the score, those thoughts and that understanding is there.

Sometimes it’s about managing that with a little bit of predictability and control. Knowing that it’s there, what are the things that your care team has told you to look for? What is your scan schedule? What is your exam schedule? Is there a happy medium? Is your schedule every 3 months or are you every 6 months? Can you advocate for yourself? If the care team says, you’re ready to go every 6 months, if you feel, based on what you understand and information you have and who you are, can you advocate to the team? Is there any way that I can modify my schedule because I really feel like for the next year it should be this?

Attend programs such as this. Become an advocate. There are different programs where you can become a research fellow or involved in some of these things and you can pick the brain of sometimes clinicians other than your care team to get what’s up on the science. And that may help. It might not fix everything, but it may help enough around the edges to help you get a little bit more sense of evenness and calm.

Lynn Folkman [00:56:20]

Thanks, Celeste. Someone had a question, and I know this could be a little bit more medical, but what about the fatigue and chemo brain factors? Approximately how long to expect these to continue? They’re avoiding a book club for struggling how to find words when speaking on the fly. Obviously that is physical but it’s also stressful and anxiety producing.

Celeste Vaughan-Briggs, LCSW [00:56:48]

Yes. Post-treatment side effects are a very big deal, and neuro post-treatment side effects are a very big deal. Now there are some cancer centers across the country where there are now new sub-clinics that are looking at that. And strategies along with neuropsychiatrists and psychologists, folks who are doing research to, identify the phenomena, rule out any physiological symptoms that can be addressed, address pharmacological symptoms by tweaking medications that may exacerbate some of these issues. Nutritionists, they’re not everywhere but they’re coming more and more.

It has been something, again, that advocacy piece. That’s going to some of the vetted groups online, and you can find where some of these centers are or asking other survivors where they’ve gone to get better attention and help because it’s real.

For a long time, I know survivors and patients have said, and I can really hear what they’re saying, that the medical community or was a little like, “Shh, be grateful that you’re cancer free. So what if you have these long-term debilitating side effects?” There’s been that tension.

So advocacy for and attention to physician champions, nurse champions, social workers, other care team members who will try to address that for treatments.

Interestingly, and I would have to find where it was, I was doing a talk a couple years ago. There was a little bit of convergence around some of the research that was happening around long COVID and long-term side effects with chemo brain and strategies. It may be on the American Psychosocial Oncology Society’s journal. That’s an organization I’m connected with. It might have been in a journal article I saw from there. I’ll try to do some research, but I do know that there was something that came out of that. But there are some centers that are focusing on that. So ask your care team. Do some research.

Lynn Folkman [00:59:36]

Thanks, Celeste. I’m going to pose this to you, Shannon, and then I’ll answer it. How did your friends and family react when you told them that you had cancer?

Shannon Gottesman [00:59:46]

It was all over the board. I would say the first month or 2 was the most overwhelming. And also, for me, truly some of the scariest parts of it, just because I had to have PET scans because I had positive nodes and that just led to additional testing and things we had to do. I really shut down, even though I’m a very outgoing person. It was really hard for me to process it myself and figure out how I was going to sit with this.

I learned pretty quickly and got some advice and just learned through talking that writing was really helpful for me. And so I started using CaringBridge as sort of food train, but also because I could write updates. People could read them, and I didn’t have to be overwhelmed because I was getting so overwhelmed by messages. Thoughtful, wonderful, which is great support and I’m grateful I had that, but it was almost too much and I couldn’t just keep cutting and pasting things. That was really my way to start being able to handle how friends and family were reacting, keeping in touch when I was getting questions. And that has really turned into a huge surviving mechanism for me in coping.

I do a lot of prompts in writing with Wildfire magazine. I journal a ton, and that all came out because of that early reaction from friends and family.

I also worked for most of the entire time of my treatment with the exception of surgery, I took a few weeks off, and I remember very clearly someone saying like, assign a work captain. Have someone at work that can be your person. That when people at work also are checking in and want to know how they can help, that they can go to your captain and that person can be your advocate. And that really helped me a lot.

I would say that my friends and family, this came out of nowhere. I have no genetics, I have no family history. My mammo tech saved my life. Like there was a lot that happened, and I think people were shocked. And I really had to work through that. But I think I had to figure out how I was going to deal and do that. So I hope that that’s helpful in how I that first few weeks of what it meant for me to talk with them.

Lynn Folkman [01:02:00]

Thanks, Shannon. When I was diagnosed I was single. My mother had just passed away a few months earlier. My father was still alive, and I kept it from my father for a little bit because I felt so guilty that I would have to tell him. My mother also passed away of a different type of cancer. Thankfully, my sister, she was a nurse by trade, although she wasn’t actively nursing then. But once a nurse, always a nurse, and she really was by my side every single appointment.

I didn’t want to know a lot. I just was like, What are the five things right now in front of me? Maybe five was too much, I should say, What is the one thing in front of me right now? And she really kept the family in the loop, kept my friends in the loop. She reminded me too of like, “Remember, Lynn, you had that. Ask that question.” Or she would ask it for me with the care team.

I also worked full time and really had the support of a wonderful workplace that was very accommodating, and I was very fortunate to have that too.

Celeste Vaughan-Briggs, LCSW [01:03:23]

Yeah, wonderful. Those resources such as CaringBridge are really wonderful.

Some people like to use social media. I caution people to think through that because once things are out in social media, you cannot retract them. CaringBridge and some of these other portals, it’s out there, but it’s a little bit more secure because it’s HIPAA compliant. Also, it is OK to tell as much or a little as little of your story as you choose. Having a designee, though, sometimes is helpful, even if you’re totally analog, nothing online. But to have a sister or a cousin. This is the person who I’m going to tell or is going to be with me at appointments, and this is what you can tell everybody else. What is the acceptable limit of information. It is OK to say, this is how I want inquiry.

It can also be a challenge, and I don’t know if either of you can speak to it, where sometimes folks in that circle of support are a little bit disappointing. The people who you might’ve thought would rally, didn’t necessarily rally. And then the people, there’s some unexpected surprises, and that can sometimes impact your feelings of distress.

Lynn Folkman [01:04:55]

Very true. That’s what I’m going to say about that. I think that is, you said it in a synopsis. Some people really surprise you, and some people you might be disappointed by. And then you decide what you want to do within those relationships. It’s all OK, and you get to choose.

We’re going to take one more quick question and then I’m going to sort of wrap up.

“I personally feel awkward as I face a reemergence back into society after completion of my cancer treatment. I don’t feel normal, but people are starting to treat me like I was never sick. I still face many health issues related to treatment, and I feel like I don’t fit in. I feel like there needs to be more discussion about this period of the cancer journey and its effect on mental health.”

Do you want to comment on that, Celeste? I know we’ve been talking a lot about that.

Celeste Vaughan-Briggs, LCSW [01:05:52]

Absolutely. I think that really does sum it up. Normal isn’t normal anymore because you’ve had this significant life-altering event. You’ve gone through a transformative, invasive, disruptive to all aspects of your body, mind, and spirit experience. You’re going to look different on the other side, you’re going to feel different, but the people around you aren’t necessarily going to know how to respond to that.

We can give them some grace of not knowing what they don’t know. But it is OK for you to feel different or feel like normal isn’t normal anymore. But you can come up with a new normal. Sometimes that journey, maybe some of the tools like Shannon mentioned: journaling, the creative arts, expression, things like Lynn said, mindfulness, getting in touch with yourself, of who this new person, this new you is emerging on the other side and saying, “OK, this is new me. This is what I need from you, and this is how I need you to support me differently. Because this did happen and it was a big deal. And here I am, see me as I am now.”

Shannon Gottesman [01:07:12]

I also think it’s OK to admit to myself, like it’s OK to not be OK. Because like they say that I’m out of active treatment and I should be OK. And some days are worse than others.

I’ve been really struggling with like sleeping and the night sweats and just not having a good sleeping foundation, and I’m tired and I feel really exhausted. And it’s OK for me to say that out loud and to accept that and to figure out how I deal with that.

I think it’s also giving yourself that grace to be able to say those things out loud. And just know that like survivorship for me, I’ve accepted that it’s this forever chapter and there’s going to be ebbs and flows of lifetimes and different stages of medication and post-treatment medication and not post-treatment checking in and what that means.

I think figuring out what that is for you is really important. But yeah, it’s hard. It’s hard to reemerge and find that new you and to accept the new you. I think I’m still having a lot of issues and challenges because I am just now 1 year NED [no evidence of disease] and 2 years from diagnosis and there are many days that I don’t recognize the new me. And that’s been really hard, not only physically in how I look but how I feel. I’ve had to reinvent myself so much over these last few years, and I’m still working with my therapist and lots of other people through what that means. But yes to everything Celeste said.

Lynn Folkman [01:08:41]

I compare it to like I’m trying to fit a square peg into a round hole after my diagnosis. So I think we’re just all trying to figure it out. And like you said, Celeste, earlier, choosing what works because it’s different for everyone.

I want to thank you so much, Celeste, for joining us and sharing your expertise. This flew by! Thank you to Shannon as well for sharing her experience and helping moderate tonight’s program. Again, it was just a great discussion with lots of helpful information.