Navigating risk of recurrence after an early-stage breast cancer diagnosis

Session I: Understanding and reducing risk of breast cancer recurrence

Tuesday, November 12, 7:00 pm (ET) - 8:15 pm (ET)

Learn how testing may help you make more informed treatment decisions, predict your personal risk of recurrence, and hear about treatments that may be available to reduce risk. We will also talk about changes you can make right away to help improve your quality of life and lower risk of recurrence.

Speaker: Monique Gary, DO, MSc, FACS

Moderator: Ebony-Joy Igbinoba

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

Session II: Managing fear of breast cancer recurrence

Tuesday, November 19, 7:00 pm (ET) - 8:15 pm (ET)

It is common to worry about cancer coming back after being diagnosed with breast cancer. This fear can have a powerful effect on your everyday life. This webinar will help you understand what your concerns or ‘triggers’ may be and will teach coping strategies to help manage them.

Speaker: Maurade Gormley, PhD, C-PNP

Moderator: Lynn Folkman

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

Transcripts

• Session I
• Session II

Session I: Understanding and reducing risk of breast cancer recurrence

Ebony-Joy Igbinoba [00:00:11]

I am honored to introduce you to today’s speaker, Dr. Monique Gary. Dr. Gary is a board-certified, fellowship-trained breast surgical oncologist. She is medical director at Grand View Health and Penn Center Cancer Network Program.

Dr. Gary does so much for those of us with a breast cancer diagnosis and is a great friend of LBBC. Please read her full bio on lbbc.org.

Monique Gary, DO, MSc, FACS [00:00:46]

Hi, good evening. Hello, everybody. Woo!

This is… boy! This is a loaded topic and it’s probably a topic that is more than we can discuss today. It’s going to get to be more than I think we’ll have time for. But I’m going to do my best to, one, give an overview of the genomic landscape. And then, two, talk about some of the technology that we have and how genomics helps us look at risk of recurrence. But then, three, what are some of the evidence-based things that you can do to focus on the things that you can control? Because I’d like to frame this in the context of a really pivotal life event.

Cancer changes everything. It is the lightning strike in your life that now makes you want to think twice about stepping outside your door because of fear that lightning will strike again. I use that to say that the fear of recurrence is so much more than the fear of actual in-breast or tumor recurrence, fear of metastatic disease. There’s a lot of mental gymnastics and things that happen that influence that fear. So the second part of this talk that you’re going to get, I think next week, is going to be even more pivotal than this one because it talks about how to deal with that. That battlefield of the mind, as it were.

We’ll talk about some physical stuff. And then we’re going to talk a little bit more about some of the ways that we’re looking at recurrence.

As they mentioned, I’m Dr. Mo, I’m a breast surgeon. I’m CEO of a farm for integrative wellness in Bucks County. I’m a professor and faculty at Dartmouth. I wear a lot of hats. But the one that I’m so proud of is to be a breast surgical oncologist. I have the privilege of taking care of breast cancer patients every single day, and it is truly my life’s work and my life’s mission. I dedicate this all to my mother who had ovarian cancer, 29, and my grandmother who had bilateral cancer that didn’t show up on mammograms called invasive lobular carcinoma. And so the work that I do is an extension of the care that I wish they had received and that I hope you all are receiving wherever you are in the world.

We’re going to talk about understanding risk of recurrence. And the first thing you should know if you don’t already — and you probably do, but just to level set — is that breast cancer is not one single disease. It never was, but it really, really isn’t now. There’s so many tools that help us to refine the prognosis, assess how treatment is going. It used to be that we had a TNM scoring system when someone would say, “OK, your stage of cancer is this, it’s based on the tumor, the node, and then any evidence of metastatic disease.” And then we learn about hormone receptors, and we’re going to talk a little bit about that. And now there’s proliferation scores, there’s computer models, there’s molecular assays, there’s all sorts of really interesting things happening to help us understand how breast cancer is unique and how to make the treatments that much more precise.

This is an ongoing study. So my disclaimer here is that I don’t have all the answers. And so there may be a lot of “I don’t knows,” but it’s good questions that you can take back to your oncologist. And it’s good questions that you could ask LBBC to continue to provide programming around.

When I talk about precision and treatment and this genomic explosion, what do I mean? You might see some of this stuff that looks a little bit familiar, but basically when we talk about understanding the tumor’s biology, we used to just think it was about the estrogen receptor and the progesterone receptor, or the little, the stations on top of that cancer cell. Now we know that there are different subtypes of breast cancer, and a subtype tells us exactly how it’s going to behave. It tells us what it responds to. It doesn’t tell us what caused it. We don’t know what caused cancer, but it tells us whether or not estrogen is driving it and whether or not progesterone is driving it and whether or not it’s expressing something called HER2, or this human epidermal growth factor receptor.

When these cancer cells have receptors, the simplest explanation I use is it’s like having tollbooths on the turnpike. If you got a tollbooth, I know you’re using a dollar. So estrogen is your dollar, and the basis for your whole-body treatment is going to be, partially, blocking that estrogen, taking away your dollars so you don’t go through more tollbooths.

We used to think it stopped there. But there are subtypes of breast cancer. You may hear your oncologist say, luminal A, which is estrogen receptor, any PR, the HER2 is negative, and the proliferation score is low.

Monique Gary, DO, MSc, FACS [00:05:27]

You might hear your doctor say, “You have luminal type B.” Luminal B breast cancers. These are a little bit more aggressive. When we look at the prognosis, from the best prognosis moving on down to the worst prognosis, and you can see when HER2, that protein, is overexpressed that prognosis getting a little worse. Triple negative, right? Your cancer cells don’t have any tollbooths on them that we know of, at this time. It’s kind of like being in the E-ZPass lane. I’m in Pennsylvania, so people in PA know E-ZPass. But basically, I can’t take away your dollars because you’re not using dollars. So how do we treat you and how do we manage the whole-body therapy? Because the way you have to think about breast cancer, and I know I’m probably preaching to the choir, is that something treats the breast — that’s what the surgery does, that’s what the radiation does — and something treats the rest, the whole body. That’s what your medical oncologist does.

We’re going to be talking a lot about what the medical oncologist does and how they use these tools to make decisions. But what you should get from this is that there are so many different types of breast cancer based on these receptors and these proliferation rates. And depending on what you have, there’s a better or slightly worse prognosis. And the treatments are tailored to some of these too. And so they become predictive and prognostic. So not just predicting how well you’re going to do in treatment, but can we predict, or can we say, what it’s going to do for your prognosis, how long you’re going to live, and whether or not cancer’s going to come back. And these markers kind of are that. There are markers that help us to figure out how likely cancer is to happen again.

Whether or not you’ve got cancer in your lymph nodes and how many lymph nodes. The grade, or how fast a tumor’s growing. The size of a tumor. Age, not as much, although we tend to think young people, more aggressive cancers. This LVI, this word means lymphovascular invasion. Are there tumor cells in the lymphatics, or the spider web system surrounding a tumor? Think about your tumor like chewing gum in a spider web. The tumor is the chewing gum, but in the spider web, or the lymphatics, you’ve got a network that can go places. So when you have cancer cells that have invaded those lymphatics, or that spider web system around the tumor, we start to think, is this a higher risk of cancer coming back again. Our hormone receptors, our ER, our PR, our HER2/neu. And then these genomic assays.

So genetics is what you’re born with. Genomics is what happens in the tumor. And I’ll give you the analogy of, I’m showing my age here, but some of you will be able to relate. Give me a little a reaction in the chat if you are able to relate to I Love Lucy. In that episode where she and Ethel work in a chocolate factory. You know what happens in that episode. The chocolates are coming off the conveyor belt, and they’re doing pretty good. They’re putting the wrappers on them, and all of a sudden the belt goes crazy. The machine goes haywire. You got 1, 2, 4 chocolates. She’s stuffing in her pockets, putting them in her cheek, she’s putting them in her hat.

That’s what happens with cancer. One makes two, two makes four, four makes a million. There’s a change in the machine that happens that makes it happen. But not all those mistakes get passed down generation after generation. That’s heredity. So that’s genetic. Genomic means what happened in that machine, what happened in that tumor? And what are the changes that we can use to diagnose, to treat, or to predict risk of recurrence.

We figured out, well, there’s some ways to look at the machine. There are some assays, and that word assay means a test. There are some tests. The genomic assays mean tumor tests. There are three that we really use. The fourth one, not as much. But the first one, you all should have hopefully heard of. Ebony-Joy, I’d love to know if you have heard of an Oncotype DX. If you’ve heard of Oncotype, put a check mark in the chat. You might have heard of MammaPrint. You might have heard of Mammostrat, although not too many people are using that one. And Prosigna is also called PAM50.

So what do I mean by that? All right, well, let’s start with the Oncotype, it’s the most common. And when you see your doctor, or my patients will ask me when they come for their post-op, “Doc, what’s my Oncotype score?”

It estimates the risk of recurrence for early-stage, hormone receptor-positive breast cancer. So the ER, the estrogen is positive, the HER2 is negative. This is considered a favorable subtype. And I hate that word, favorable, because nobody’s cancer is favorable. But some cancers will behave badly. And so these types of assays are for people whose subtype seems to be favorable. But we want to know, is it truly. If 70% or 75% of people who have this type don’t need chemo, who are the 20% that do? Who are the 30% that do? And that’s what this test helps us to understand.

Monique Gary, DO, MSc, FACS [00:10:13]

It helps us to understand how likely is a person to benefit from chemotherapy. It estimates the risk of recurrence for DCIS now, so stage 0. We’re starting to understand stage 0 is a very different disease. And when I say stage 0, the best way to think about that is think about your milk duct like an empty paper towel roll lined with bubble wrap on the inside. When that bubble wrap duplicates, replicates and keeps growing. Or a can of Pillsbury biscuits, crescent rolls. When the can pops open and the dough pops out, that’s invasive cancer. When the dough is rising, it’s still stuck in the can. That’s DCIS, stage 0.

And so how likely is that to happen, to invade, to break out? How likely is somebody to benefit from radiation? So that’s what this test tells us. It analyzes the activity of 21 genes and it calculates a score. The higher the score, the greater the risk of recurrence. And it’s now a tool that we use to help talk about things like chemotherapy and even radiation.

So that’s a first-generation test. That was the one we kind of knew that there were 21 genes we could look at and we could figure out whether or not your risk of cancer happening again somewhere else in the body is so high that you would need chemotherapy. And again, this is for the favorable types of breast cancer, the ER-positive ones. Because if you’ve got triple negative, if you’ve got HER2 positive, you would know that anything greater than 5 millimeters, any tumor greater than that, you’re likely to be recommended chemotherapy. So this is a different conversation for you.

MammaPrint. Now we’re up to 70 different genes. So we can take a tumor sample, we can take some tissue that’s removed, we can spin it down and get some RNA and some cDNA. We can do some comparative gene analysis, and we can branch you out into either high risk or low risk.

There’s some interesting controversies going on right now between Oncotype and MammaPrint as to whether or not they’re most helpful for women of color who tend to have more aggressive cancers, whether or not they’re more relevant or more precise. So there’s a lot of talk happening in the medical world right now. Some doctors are using Oncotype, most of us are. Some of us are using MammaPrint. Some of us are using both. This is helping us to decide who needs chemotherapy. And it also helps us to decide how long you need to be on endocrine therapy or anti-estrogen therapy. So MammaPrint is a tool that we use.

The PAM50 one. PAM50 is 58 genes that calculates a low, intermediate, or high risk. I don’t know many doctors using this one, but it’s another tool that we use. A genomic test, testing the tumor for risk of recurrence.

This is kind of a busy slide, but bear with me because what I want you to get from this is I want you to see. This is what I do as a surgeon. We’re talking about the breast cancer treatment of the breast. The goal, the primary treatment, I want to get rid of your tumor, and there’s some tools I can use to stratify whether or not we need to give you more treatment based on what’s happening in this tumor. This is what the surgeon and the radiation oncologist do, and the medical oncologist is using these tumor-based prediction tools.

Beyond the surgery, now we’re getting into, how do I know that there aren’t cancer cells that went somewhere else? And how do I know that it’s not going to lead to being somewhere else in my body? What are we using to check for this? The somewhere else? Are there circulating tumor cells, or as we call it, ctDNA? Are there little fragments of DNA in my bloodstream that are telling my body to do something? And there aren’t a lot of great markers for this, but it’s an area of very, very heavy research. And you can see here some of the blood-based markers. Some of your doctors might be ordering these tumor markers like CA 15-3. They might be ordering CEA, which is very non-specific for breast. They may order CA 29, ctDNA, and circulating tumor cell tests. These are whate we’re getting to. I know somebody put Signatera in the chat. We want to know, are we able to detect a minimal residual disease? Is there some fragment of cancer that’s left over?

This is something very interesting because now we can start to see, are we going to be able to develop some interventions. Do we need to give you chemotherapy based on this because there’s cancer in your bloodstream? And then how do we get from here, this minimal residual disease, to actually metastatic disease? Does a high one of these truly mean one of these? And that is a question a lot of doctors are asking themselves, or asking each other. And this connection here is not so solid. Because CA 15-3 is not so specific. CEA is highest in colon cancer even. CA 29, 19 and CA-125, those tests are not so specific for breast cancer. And so it’s a confusing time for you because you’re like, “Why can’t there just be a blood test for this, doc?” And some doctors are starting to look at some.

Monique Gary, DO, MSc, FACS [00:15:10]

So here we go, Signatera enters the chat. Signatera, and this is taken directly from their website I claim no credit for this slide, but the first time your doctor orders it, they need some tissue and they need a blood sample. They’re going to build out a signature here, almost like a thumbprint. And they’re going to look inside your blood to see if that signature or that thumbprint is there. After they build the test, then every time you go to your doctor, they’re going to draw some more blood. How often does this happen? Well, could be twice a year, could be every 3 months. It really varies, I think, depending on what that signature’s doing.

They’re saying repeated blood tests can help to see, are there some changes in the circulating tumor DNA, are there little fragments in the bloodstream that can help your doctor understand if your cancer’s shrinking, if it’s growing, is it coming back. This is where we’re now starting to get to where there’s some blood tests to help with this.

How does it help? In diagnosis, let’s say you’ve got to get chemo beforehand. Can we draw your blood and can we look at those levels to see is the chemotherapy actually working? As a surgeon, I use my clinical exam. After about the second round of chemo before surgery, that tumor’s going to start to shrink. You’re not going to feel it as much. I reorder imaging. So I have some tools that help me to measure how well a tumor is responding.

After surgery, now, are there people who have some disease that’s left over? Should they get higher or more strong adjuvant, or after surgery, treatment than others? And then in the surveillance setting. Are we looking at whether or not people are testing high for these levels? And if so, does it mean that their cancer’s coming back? And if so, would they benefit from immunotherapy? So this timeline, or this pipeline is really, is what we’re hoping for.

The challenge is: What happens if you’re after surgery and you’re after chemo and we’re getting this blood test and here it goes and it goes down. What happens if it spikes again? Then you’re thinking, “Oh gosh, my levels are up. My Signatera level is up.” And we do a mammogram, we do an ultrasound, we do an MRI, and we don’t find anything. So now your insurance says, OK, well you’re not getting a PET scan, you only had stage I breast cancer. Now what do we do for the next 3 or 6 months? And if we get it again 3 or 6 months later, and it’s still hovering here, what do we offer you? What do I say to you that this value hasn’t gone down. It hasn’t gone down, or it crept up a little bit. Maybe not up to here, but maybe it crept up to here. And so there’s a lot of unanswered questions about how to incorporate these types of tests into clinical practice. Because when we end up doing the workup and we don’t find any cancer, but your numbers are up, what does it mean and how do you as the patient live with the results?

That is the question. Before we do any test, we need to anticipate what are you going to do with these results. What am I going to do? If I order this test, what am I going to do with these results? And how do I justify and explain it to you?

Ebony-Joy Igbinoba [00:18:23]

Dr. Gary?

Monique Gary, DO, MSc, FACS [00:18:24]

Yeah, ask me anything.

Ebony-Joy Igbinoba [00:18:26]

OK. Yeah. So it’s interesting that you are talking about this because it was offered to me probably about 3 or 4 years in, and I was just kind of shocked. I was like, “How are you going to get my cancer if you took it out?” So that was just scary. I don’t know if you can. I was like, where is this cancer sitting, if it’s outside of my body to even run this test?

Monique Gary, DO, MSc, FACS [00:18:52]

And the answer is, we don’t know. It’s not outside your body, but certainly outside your breast, because my job as a surgeon is to get rid of the tumor and get clear margins. And you don’t get the advance to radiation or anything else until I have clear margins, meaning the edges are clear.

But these circulating cells, we don’t know where they are. We don’t know where they’ll land. We don’t know when they’ll land. And so it’s a tricky and a very nuanced conversation. And when you look at who’s using these the most, many doctors in academic centers are using them because they have tools to help refine: Where do we search? How do we know whether it’s going liver or brain or pancreas or lung? How do we begin to tease out the results of elevated levels of these? And there are lots of different ones of these on the market. Signatera is probably one of the ones that you hear of commercially the most. But many academic institutions have their own in house. So they have their own version of this, and they’re doing clinical trials to study that. And so maybe the best place for this might be in a clinical trial, perhaps.

Again, this is editorializing, this is not Dr. Gary’s viewpoint. I’m just saying this is how we’re starting to interpret this, but this might be the reason why your doctor isn’t offering it. Because if you ask your medical oncologist, why aren’t you doing this blood test that tells that my cancer’s come back, they’re going to say, because if the number’s a little bit high, I have absolutely nothing to do to help diagnose that for you. It doesn’t mean anything. There’s no threshold yet by which we know that if it’s this high, oh, it’s got to be here. We just don’t know yet.

There’s so many targets. And while it can be confusing, while it’s daunting, while it is probably a very unsatisfying conversation that I’m having with you right now, this is important because this is teaching us that we are learning so much. In the next several years, we’re going to be able to look for signatures that help to unlock proliferative signaling and evade growth suppressing. We’re going to look at how our immune systems are better fighting cancer cells. We can look for inflammation and polymorphic microbiomes. Our gut microbiome. We’re going to talk about how our intestines contribute to our cancer risk recurrence.

This is something I hope that feels hopeful to you, because while it seems confusing now, confusion is the gateway to hope. Let me just say that. We’re on the path, and we’re not looking back. Just because your doctor doesn’t offer this today doesn’t mean that your doctor won’t offer this in the future. Because I believe that this, in the next 2 to 5 years really will become much more standard of care as we’re able to better refine and diagnose where cancer could be spreading.

Monique Gary, DO, MSc, FACS [00:21:32]

The last thing I was asked to talk about, and this should be a separate topic altogether, is what about precision wellness. We got precision medicine, precision oncology, and, it’s maybe not that precise but we’re getting better. So what about wellness?

And this is when we talk about the things that you can control. So what is integrative oncology? Integrative oncology, we’re talking about lifestyle modifications. It’s a patient-centered, evidence-informed field of cancer care. It’s not just the hoodoo. It’s not just the thing that we kind of believe, but there isn’t a science to it. But there is a science to how lifestyle modifications can influence your health, your quality of life, your clinical outcomes, how it can reduce your risk of recurrence.

I like to couple this conversation because there are things you cannot control. What’s happening in your very cells and in your genome. What happened in your breasts, what happened in your body, you cannot control. But the things that you can control, I call the three M’s: your meals, your movement, your mindset. These are things that you can control, and they actually do influence your risk of recurrence. It’s not all just theoretical.

Let’s talk about the movement. How does exercise lower cancer risk? Well, first, it decreases the biologically available hormones, and that decreased lifetime exposure helps to decrease the risk of hormone-related cancers. So you got breast, uterine, ovarian, prostate, testicular cancer. And this was a slide that I used for all cancers, but decreasing hormones can certainly help to decrease the risk of hormone-related cancers. I liken it to estrogen as the gasoline that makes the car go. We can empty out the car, the gas tank, so that the car is less likely to go down the road again.

Let’s talk about foods. Directly and indirectly, foods can help fight cancer. Directly: vitamins, minerals, phytochemicals have anticancer effects. And I’m happy to talk more about this when I finish the presentation. We can have just a chat about what types of foods. But indirectly, decreasing fat, low calories, you got more fiber, you have nutrient-dense foods that are going to fill up your plate and fill up your stomach so that you’re less likely to eat things that are the poor choices of calories. And there’s a science behind that too.

So you want to add your cancer protective foods, those phytochemicals, eat your rainbow. Subtract the foods that are going to increase the risk, the smoked and processed meats, processed foods, extra glucose. Sugar in moderation, and certainly from our fruits is not a bad thing, but excess and exogenous sugar is something you want to try to avoid. Calorie dense foods. You want to replace those.

The phytochemicals are the cancer fighters. They’re naturally occurring. They look, they smell, they taste, they chew. Oh, you’re going to be chewing that kale, absolutely. Unless you really, really rub it with some lemon juice and get it nice and tender, that kale’s going to be awful chewy for you. But these things help to fight. I left out the slide that talks about all the different ways that they fight. But they can fight by increasing and inducing natural killer cells. They can fight by being a co-factor for reactions in the body. By decreasing the DNA breakdown and increasing DNA repair.

Your foods can help you fight.

Monique Gary, DO, MSc, FACS [00:25:00]

Let’s talk about movement. Exercise decreases endogenous insulin. Higher levels of insulin are linked to lots of cancers and recurrence. We have IGF. IGF, high levels associated with cancer risk recurrence. So moving your body has a benefit, decreases the risk of recurrence. And here it is.

We looked at a couple studies — this is from a 2008 AACR report, and I’ve got an updated one on the next slide — but when women move their bodies, they decrease their risk by 15% to 50%. So four times a week or more, during the reproductive years, postmenopausal women with higher rates of activity have lower incidence of cancer, but it also decreases the risk of recurrence.

Let’s talk about mindset a little bit. VEGF, the vascular endothelial growth factor. Tumors need blood to grow. They need nutrition. Nutrition and oxygen. What brings it there? Blood vessels. There’s a hormone, right? There’s a growth factor that says grow toward this tumor. It’s like a garden where you’ve got a weed growing, and the bigger that weed gets, it needs more energy, needs more fertilizer. Something’s bringing those blood vessels there. We find that women who had ovarian cancer, who had higher levels of social well-being, who showed up for the chat on a Tuesday night with Living Beyond Breast Cancer, had lower levels of this endothelial growth factor. By being not in isolation, by being around each other, by being in community, by sleeping.

Insufficient sleep and circadian rhythm disruptions are associated with negative health outcomes. Well, we always kind of knew it, but here it is in black and white. You’ve got to find a way. And I ask my patients: Are you getting sleep. Are you staying asleep? And we talk about what does that look like. Are you having trouble getting sleep or having trouble staying asleep or both? And what are some natural ways to help you to increase and induce your sleep but have a better, more restful sleep. Because your body needs it. And here’s the science behind it. Negative health outcomes. You end up with loss of gene expression and changes in the regulation of our genes and our immune and our stress response. And when our bodies are under stress, we do not perform optimally.

But what’s really happening is more than molecular. This is a great model that I came across that talks about how to conceptualize the fear of cancer recurrence. All these things are at play. Vulnerability. We’re having traumatic life events, we’re caregiving or being cared for in ways that we never thought we would have to. Things we don’t know, the lack of information, all of that feeds into a heightened fear of recurrence. Our changes in ourself, our changes in what’s important, changes in planning for the future, all of this is at play.

When a patient asks me questions about recurrence, the conversation that I have has a good bit of science. It’s got a lot of stuff you can control — those three M’s, your meals, your movement, your mindset — and it talks a bit about this. Because this fear interferes with everything. And so the next talk that you’re going to hear — I believe it’s going to be next week, and we’ll put up the information for it — talks about this. How do we manage this? Because no matter what surgery a person does, I have patients who do a double mastectomy, and they say, “Now we’re not doing any more mammograms. How do I know nothing is there?” When they did the double mastectomy so there’d be no more mammograms so they’d have peace of mind.

But the fear is real, and you should validate it. It’s important that you understand how to manage the emotional response around it, because there’s no blood test that fixes any of this. And that’s something that I want you to really think about because everybody rushes to their doctor and you ask for the blood test, and then we do it. Then the next headache, you’re right back at square zero. So you’ve got to manage your mindset as best as you can surrounding recurrence so that all these things can really work together.

There are some recommendations as far as healthy lifestyle. These are all the different societies; we’re getting hip to the game. ASCO, American Cancer Society, the Society for Integrative Oncology. This is a good one. You should go to their website and you will see practice guidelines on the evidence-based use of integrative therapies during and after cancer. These are the things that have some evidence that show how we’re able to use integrative therapies to decrease the risk of recurrence and also improve your mindset around those things. I want you to know that there is evidence, there is a guideline, and there’s a rubric that doctors can follow. So if your doctor says “Oh, I don’t know about that,” just get up and move your body. Walk to your mailbox, walk around your neighborhood.

If you want more information, these are great sites for you to go so that you can understand the benefits of an integrative approach to reducing your risk of recurrence.

The last thing I’ll say is, this is a self-promoting slide of my farm where we talk about benefits of horticultural therapy. We have hort therapy classes, and we have a place for people to practice their meals, their movement, their mindset. And these are the types of places, wherever you live in the country, you should seek out. Find community, find ways to maximize the things that you can do to reduce your risk of recurrence, increase your peace of mind and your overall sense of well-being. Because I promise you that the science is catching up. It’s catching up very quickly.

Ebony-Joy Igbinoba [00:30:26]

Dr. Gary, thank you so much for that informative presentation. It was really, really good to navigate the things that we need to know in terms of recurrence, because I myself live with it a lot. I want informed decisions, but there’s so many things that are happening. And a lot of people are asking that question too. How do we know, for example, if we get to the end of our treatment — so you get a 5-year hormonal treatment, and then you’re done — then what next?

Monique Gary, DO, MSc, FACS [00:31:02]

OK. I’m sorry, I don’t why my light looks all crazy like that. Do I look yellow to everybody? All right, I can’t control it.

OK, so for the 5 years of hormonal treatment. We used to think that you take that estrogen-blocking pill for 5 years and then it helps give you benefit for up to 15-plus years. Now, there’s an assay that we can do, there’s a good clinical trial, and there are tests that we can do to determine the benefit of extended endocrine therapy. Not that anybody wants to be on that pill longer than they have to, but we are learning now that we can either de-escalate, and we can drop off and decrease your therapy at 3 years, or we can keep going at 7 and at 10 years, if you’re on that estrogen blocker. There are some assays or tests that we can do to see if adding something extra to it, like immunotherapy, would be helpful as well.

So yes, there is a test for extended endocrine therapy. You can ask your doctor. I’m going to put in the chat: Extended endocrine therapy assays. Breast Cancer Index. Yeah, BCI is one of them, exactly right. But there’s some others too. EndoPredict, I think, was another one. Yes, you can ask your doctor, and that will help you.

Now, what if you don’t have a pill, an estrogen blocker to take? For those individuals who have triple-negative breast cancer, we know now that there are higher-risk and lower-risk profiles of TNBC even. Even if you have early-stage, triple-negative breast cancer, you may have a higher risk of recurrence or distant disease. And so your treatment is going to possibly be coupled with some of the immunotherapy now. If you have TNBC and you’re just starting your journey, ask your doctor, how do I know that something like Kadcyla [trastuzumab emtansine] or Keytruda [pembrolizumab] — I’m using the drug names, I’m not endorsing any drugs, but I don’t want to use the generic names because they’re palbociclib and things like that, it’s hard to understand. But you can ask your doctor about whether or not other agents would be helpful. Immunotherapy in addition to chemotherapy for you.

So we’re getting to the point where we know now there’s some combination things that we can do.

What else?

Ebony-Joy Igbinoba [00:33:38]

Thank you. OK, so you mentioned some health things in terms of sleep and exercise, but these medicines, when you’re thrust into medically-induced menopause, they come with a lot of side effects. You need to sleep, but the medicines make you not sleep or the stress makes you not sleep. So people are asking what can they do to help with sleep?

Monique Gary, DO, MSc, FACS [00:34:00]

OK, so this is Dr. Gary’s recommendation. This is not an endorsement, I am not diagnosing or treating you as a person, but this is what I recommend to my patients.

One: I recommend organic tart cherry juice, about 4 to 6 ounces, usually 4 ounces, about an hour or 2 before bedtime. I recommend a sleep hygiene regimen, meaning you start powering down your electronics at least an hour before bedtime, ideally 2 hours before bedtime. You start to create an atmosphere and an expectation of rest. Ashwagandha is an herbal supplement that can be very helpful for sleep. Magnesium, I don’t think we realize how magnesium deficient sometimes we are. You have to be careful with the dosing, use no more than 400 milligrams about an hour or 2 before bedtime, because, as you imagine, milk of magnesium or mag sulfate, those things can influence your bowels.

So there’s some natural things you can do, melatonin as well. And yep, somebody put medical THC, Charlotte’s Web gummies, there’s a good turmeric tea. You’ve got to figure out what works for you. And I suspect that it will be more than one thing. So don’t give up. You’ve got to find the right combination of things. Be willing to try a couple different things and not give up.

There are also frequencies that you can listen to that will help with sleep. Certain megahertz will help. It’s ambient noise, but it’s worth a try, especially if you are wanting to avoid something pharmacologic.

Use every resource, use the Calm app, go on YouTube and find those frequencies, and keep a journal. Keep a log of what you’re doing so that way it will help to see what’s working and what’s not working.

Ebony-Joy Igbinoba [00:35:30]

A lot of attendees are asking about how we know if this information is accurate: if your Oncotype score is accurate, if your treatment is accurate. What is the baseline for this to see is it working?

Monique Gary, DO, MSc, FACS [00:36:09]

You could ask that very specific question to your doctor. And they may, if they have the time, walk you through some of the subsets of people in the trials. Because the one thing about Oncotype is that they have tried to fit this test to so many people in so many different populations that there probably are some people that fit your profile, that have been in the trials, either the early one or in the later trials. I think that it’s a good question to ask your doctor.

You probably are not an outlier, but if you are an outlier, someone should be saying to you, you weren’t a part of these trials. If you’re 17 years old, for example, my youngest breast cancer patient was 17. There weren’t any teenagers in those trials. So that person’s an outlier. You’ve got to ask your doctor that question: What confidence do you place in this? And why? And where they may take you is they may take you to something called the NCCN guidelines, nccn.org, putting it in the chat. It’s a lot. It’s like a roadmap. But it is the guideline for what most of us do. It’s a way that you can know that we’re not just picking something out of the hat, but that there are actually rules to how and why this applies to you. So the guidelines are a great place for you to go so that you can feel more confident that what you’re getting is the standard of care.

Ebony-Joy Igbinoba [00:37:33]

Thank you. And someone asked, can you use the Oncotype DX test years after treatment? For any of those, the MammaPrint or anything, is there a timeline to use those or they can be used anywhere throughout treatment?

Monique Gary, DO, MSc, FACS [00:37:50]

That’s a great question and I honestly don’t know the answer to that because I generally don’t order an Oncotype years and years later. But I know MammaPrint can be used several years later. And that’s one of the trials that’s going on right now is there’s a trial looking at using MammaPrint to predict extended endocrine therapy. So yes, as long as we have some tissue that we can use — we call it in the blocks, like the wax blocks. What you may not know is that when a tumor is removed, it goes to the pathology lab where they put it in a block of wax, like the wax museum, and then they slice it up on a little deli slicer like a deck of cards. And then all of those cards get saved. If there’s still tissue left somewhere in the deck, we can go back years later and we can do additional testing on it. And so the answer is that yes, we can go, 5 years out, and we can look at those things. You can ask that question at any time, and your doctor should be able to at least tell you what’s available to you based on where you are in your journey.

Ebony-Joy Igbinoba [00:38:58]

Thank you. Some of the research that’s out there is very specific to certain racial groups or age groups or weight groups. So for me as a Black woman, when I found out I had breast cancer, I immediately saw, oh my gosh, all Black women are more likely to die from this, or 40% or higher risk. So that increases the likelihood of me worrying about is this treatment working because the data that they’re using didn’t test anyone like me. The confidence in the treatment plan is, to me, I hope it works because we didn’t test anyone like you. So we don’t know. And I’ve heard that in different conversations.

For participants out there, what could provide hope or more confidence in a system that has marginalized or left out or just made it look bad?

Monique Gary, DO, MSc, FACS [00:40:08]

I love that question. And the answer is, you can’t walk forward looking backwards. We use so much retrospective data to inform future things. And if you weren’t included in that retrospective data, how can we ever make any good conclusions about your future? I put a link in the chat on MammaPrint that’s being done. There was a study that came out actually this year, back in May, that looked at the influence of race and ethnicity on the genomic assay and on prognosis. So we’re starting to answer those questions. It’s valid to ask your doctor, how do I know this is relevant to me? What was the breakdown of people? And I’ll be honest with you, the trials were not required to give all of that demographic data. So your doctor may not even know how many Black women were in this trial. But you can go down that rabbit hole. The answer’s probably not that many.

One of the things that we’re doing to rectify this, because we can’t fix what we did, but looking forward, we’re doing more trials like real world data, real world evidence. You will see that more and more. How are people doing on these types of therapies that help us to inform the people who weren’t included? Because clinical trials in general used to look for the healthiest of the sick, so to speak. You’d be excluded if you had diabetes that was not controlled or hypertension or kidney disease, or if you hadn’t had a first-line therapy or if you failed a first line. You’ve got to check all the boxes to be in a clinical trial. I think that we’re getting better about opening and widening that lens. Even the drugs that we’re using now, we’re starting to go back and test them on different populations of folks to see.

That may not be a satisfactory answer and it certainly isn’t for me as a Black woman because I think about what’s happening in my Black body too. And like, how do we know? The answer is, we’ve got to get involved. When we’re at the table, we’re not on the menu. We’ve got to get involved in clinical trials.

Ebony-Joy Igbinoba [00:42:04]

Thank you. I think a lot of people have been talking about this treatment to prevent recurrence, but all the side effects that come with it. And so hot flashes, can you talk about them? A couple of people are like, I need to sleep, but these hot flashes! Like in my house right now, it’s cold outside, but I have my air conditioner set at like 65 degrees.

Monique Gary, DO, MSc, FACS [00:42:29]

Personal summers are real. It wasn’t until I hit perimenopause that I was really, truly able to appreciate what cancer patients are going through, especially those of you who are on anti-estrogen therapies. I call them personal summers because it makes it sound just a little bit fancier. But what can we do?

So there are a couple things you can do. One, you’ve got to look at what foods, what things induce your hot flashes. Let’s start with natural stuff. Caffeine. Caffeine can induce hot flashes, spicy food can induce hot flashes, alcohol intake can induce hot flashes. Those are three things that you could start to modify. Not saying you can’t have spicy food, just know it’s going to raise your basal body temperature. There are herbal supplements that can help to decrease the risk of and mitigate hot flashes. Bee pollen extract is one of them. And again, this is not intended to diagnose or treat, but there are things that you can research and that you might talk to your doctors and your team about. Bee pollen extract is one of them. Evening primrose oil. Although talk to your doctor about any interactions with evening primrose oil, which is a capsule, not an oil. Mushrooms — the lion’s mane, the turkey tail, the cordyceps — can help with that.

And there’s something called Veozah. Because the way it works it is a hormone-free option for hot flashes and night sweats. It’s something to talk to your doctor about. It’s a neurokinin receptor antagonist. So the thing that makes you flame on like Elmo, it blocks that thing. That’s something you can definitely talk to your doctor about.

Ebony-Joy Igbinoba [00:44:15]

Thank you.

You have talked, you spoke about diet and someone mentioned keto or no sugar. I know no medical advice, but what guidance could you give on diet?

Monique Gary, DO, MSc, FACS [00:44:31]

OK, hold on. Acupuncture, yes; for hot flashes, it can help.

So the diet that’s been most widely studied and most recommended to reduce the risk of recurrence is the Mediterranean diet. The Mediterranean diet is going to be high in vegetables, it’s going to have your good fats from fish and you’ll have some lean protein in there. You’ll have some olive oil. You’re avoiding a lot of dairy, avoiding a lot of high sugar. You’ll have some bread, but mainly like whole foods. So a whole-food diet and Mediterranean diet reduces the risk of recurrence.

Ebony-Joy Igbinoba [00:45:11]

Thank you. I would be remiss to not talk about the mental health portion of recurrence. I can speak for myself. Because I wasn’t sleeping, I would obsessively look at everything breast cancer and figure out ways, and ask when did I cause this on myself? And trying to navigate that.

What could you speak to in terms of the mental health portion? And a lot of times when I got my treatment plan, no one talked about the mental health portion of it until much later, when one of the hospitals I went to provided counseling, therapy, while I was in active treatment and I continued on.

The mental thing that cancer does with this whole recurrence. Because I’m like, I didn’t know it was in me. Now I know. And what if it can come back? What could you share with us about that?

Monique Gary, DO, MSc, FACS [00:46:14]

Yeah, I think the first thing is to give yourself a little bit of grace and some space so that you’re not, one, judging your body. Because people feel like, oh, my body betrayed me, for example.

This body got us through every single thing that it needed to get us through the good, the bad, the, the day that we had today. And this body will get us through to tomorrow. And so we honor this body. We’re going to give it a little bit of grace because it didn’t try to kill you. It didn’t try to destroy you. For a lot of people it actually told you something was happening in there. And for some of us, not so much. We found it early enough that we didn’t have any clues.

But seeking out mental health support is important. Finding psycho-oncologists, or psychologists who specialize in oncology. It’s a growing field but there are not enough of them. You can look online for some resources. I would check with LBBC. I would do a quick Google search. I would check with your insurance carrier and see if there are any oncology dedicated psychologists and psychiatrists. Use your support networks. But find the therapist.

And there’s no shame in it. You’ve got to find somebody to talk to and get this stuff out of your head. You need to start blogging, you need to start writing, you need to start journaling. You need to start figuring out a way to get it out of your head.

That’s one of the reasons that people don’t sleep. I tell my patients to keep a nightstand, a little tablet by the bedside, just a little spiral notebook or whatever, and jot down the list of things I will worry about tomorrow. Whether you choose to worry about them and look at them tomorrow, whether you burn them, whether you flush them down the toilet, put them in your bibles if you’re a spiritual person, whatever it is, you’ve got to get it out of your head. And in doing so, I think the benefit of finding good mental health support, and acknowledging and receiving that support, reaps dividends. Because the reality is that very little in this life is within our control; very, very little. And cancer is such a reminder of that very thing.

I tell my patients’ spouses, “Listen, you’re going to take a left turn instead of a right turn going home and she’s going to jump down your throat.” Like why did you take a left? we always take a right! Because you want to micromanage everything. Because the one thing happened that you couldn’t control. And so knowing that and giving yourself some grace around that is really important.

Ebony-Joy Igbinoba [00:48:27]

Thank you. Triple positive, where does that fit in all of this, with the Oncotype and all the different things, is some of this relevant to people that are triple positive?

Monique Gary, DO, MSc, FACS [00:48:42]

So triple positive, HER2-positive. MammaPrint does work for HER2-positive disease. So MammaPrint could. I think though in general, if you are HER2-positive, your treatment is going to be HER2-directed. And somebody put a question in the chat about HER2. Are there any good assays for HER2? And the answer is yes, there are. We are learning that HER2 is not just high or low anymore.

How do we find these hormone receptors? Remember science class where you had to look at the onion peel under the microscope and you took the little slip of onion and put the dye on it, and you now you’re looking at the onion has a cell wall. The way we look at hormone receptors is that we take a piece of tumor and put it on a microscope slide and we look through the lens and then we put a dye down to see does it light up for the estrogen receptor and how many light up blue? And you get a percentage. Same thing for progesterone. Put the green dye down. How many cells light up green? And the HER2 was either you had it, it was high or it was low.

Now we know that HER2 has a spectrum. There’s HER2, there’s HER2-low and there’s HER2-high. It used to be you were HER2 positive or negative. Now you could be high, you could be low, you could have some expression. We’re getting to the point now where we can give more HER2 targeted therapies as well.

For the person who’s triple positive, you’re going to get offered an anti-estrogen therapy. That one-a-day pill is going to give you 15 years of protection for taking it for 5 to 7 years, maybe 10 years. It gives you up to 15 to 20 years protection. But you’re also going to get a medicine that’s very targeted to that HER2 receptor and that treats your whole body. So we’re looking at combination therapies, we’re looking at teasing out HER2-high, HER2-low, and figuring out, you know, it’s not just positive or negative anymore.

Ebony-Joy Igbinoba [00:50:27]

Thank you. And someone mentioned Ki-67. Can you explain it and where can you find it?

Monique Gary, DO, MSc, FACS [00:50:36]

Sure thing. So, so the Ki-67 is what we call a proliferative index. It will be on your pathology report. If it is not, you could ask your doctor, what is my proliferation rate? How fast is this tumor growing? Because you get your grade. When you look at your report, it’ll say invasive mammary carcinoma, ductal type. So it broke out of the milk duct. Then it’ll say grade whatever, grade 2, 3. And then it’ll say your hormone receptors. At the bottom of that report it may say your Ki-67 proliferation index is 5%. If it’s 20%, that’s high. Anything over 20% is a high proliferation rate. It means that the cancer cells have a higher rate of growth, and it’s a marker for more aggressive type of cancer. It’s one of those prognostic factors that we talked about.

When you say, how likely is my cancer to recur or how likely am I to need chemotherapy? That Ki-67 weighs into that conversation.

Ebony-Joy Igbinoba [00:51:35]

I’m so glad you mentioned that because I was diagnosed in 2019 and had my pathology report read to me. I just recently got it re-read to me and I was like, OK, I don’t remember anything that person said 5 years ago. Because of the stress and everything.

So I know what that is because I guess I’m more present in conversations, and I’m more educated from being in these talks and things like that. I am glad that you said that because I constantly now talk to my practitioners. I message them in the middle of the night, “Hey, instead of me stressing about it, can you tell me what research you’re using?” And they will send me the article. One of my doctors, I was like, I’m really concerned about this. And they reached out to Mayo Clinic to see if it will fit for me. So it’s an ongoing relationship that I’m continuing to build with my practitioners.

Monique Gary, DO, MSc, FACS [00:52:41]

Yeah, absolutely. And I love that you said that.

One of the things that you should remember, because I see people are putting a lot of pathology questions in the chat. Your pathology from the core needle biopsy, from that initial biopsy, can be different than your final pathology. Your grade could change. You might be grade 3 at first, and it’s relative to the sample that we took out. We only took a little piece. That’s all they had to go on. When you get the whole picture, your final pathology from the actual surgical excision is what matters. Don’t just go by the biopsy, make sure that you now take into account whatever that pathology is after the surgery.

Somebody said, “Why did my grade change?” or “Why did my proliferation rate change?” It changed because they had more tissue to look at and they were able to make some more decisions about your grade, your stage, your node positivity. All those things came after the initial diagnosis and the initial biopsy.

I’m loving in the chat here, we’re talking about joint aches and somebody mentioned acupuncture. It does help. Acupuncture helps. The rising tide really floats all boats there. And making sure that you have good topical agents, making sure you have good movement. This is those three M’s. The meals, movement, mindfulness are not just to reduce recurrence, but can help you get through your therapies. It can help us with our nausea. It can help us with our joint aches. It can help us increase our bone density. So I think it’s really important, and I love that everybody’s sharing these because there’s so much that we don’t know.

The last thing I’ll say and getting to your point about the whole mindset thing is that we don’t realize the negativity that plays in the background sometimes. And one of the best tips I give to my patients is we’ll take a few minutes in the clinic and I’ll say:

“OK, you know what? I need you to just be still and be silent and tell me what’s playing in the background. What are the background thoughts? What’s the background music that’s playing right now? And it may be that you don’t feel good about yourself.

“And you know what? Every time you walk past a mirror, you’re judging yourself because of the weight that you gain during treatment. It may be, you know what, this cancer’s going to come back. It may be, whatever it is. Like what’s the soundtrack that’s played? OK, now let’s actively do a mental visualization exercise. And I want you to go over to that record player — if you can remember, record players, most of us are old enough here, thankfully — I want you to take that record off and I want you to smash it, and I want you to put a new record on the record player. What does it sound like? What’s playing, what music is playing?”

Recognizing that we have to disrupt that feedback loop that runs in the background, that soundtrack of our lives. And when you can recognize that, “You know what, I don’t have good things playing right now.” The soundtrack isn’t a good one. You’ve got to stop and you have to consciously interrupt that soundtrack in your life so that way there can be something different playing that’s more positive and more hopeful for you.

Ebony-Joy Igbinoba [00:55:30]

We have time for one more question. Well, let’s do two, because a couple of people asked about alcohol. So what are your thoughts? What are oncologist thoughts about consuming alcohol?

Monique Gary, DO, MSc, FACS [00:55:42]

All right, so my thoughts are, I get it. Everybody’s got a thing. But alcohol increases the risk of recurrence, and it increases the risk for just about every cancer. The shortest answer as to why is that alcohol gets converted to estrogen — the biochemistry of the rings and it cleaves and you cut off the this and the that, next thing you know, you’ve got estrogen. But it is estrogenic in not the good way. And it increases your obesity, it increases your risk of recurrence, it does all bad things. And so the recommendation for cancer risk recurrence is that you would drink less than three drinks a week, ideally.

Ebony-Joy Igbinoba [00:56:18]

All right. And the final question, I’m kind of putting them all together. If you have a treatment plan, but you have pre-existing issues that say if you take one estrogen thing but you have a propensity to have a side effect from it. Where can you go to get an option that works for you? If it’s alternative treatment, if it’s medical, who do you question about what’s the best game plan forward for you?

Monique Gary, DO, MSc, FACS [00:56:48]

The first thing you should know is that in general, there’s usually more than one medication to reduce recurrence if you are ER-positive. Triple negative, again, different story. But if you’re hormone receptor-positive, especially if you’re postmenopausal, there are several medications that you can try. If you are premenopausal, they may offer you ovarian suppression. Now you’re going to get Lupron injections or something, or you may end up getting an oophorectomy and that puts you into menopause. And then there’s more options for you. So if you don’t like how you feel on one, it’s like blood pressure pills. Try another one. Take a holiday, and see are these side effects a result of whatever of the pill or is it a result of perimenopause or is it a result of that new mattress I need to get. That hip is hurting for a different reason.

You take a break, under the direction of your doctor, and you say, “Look, doc, these side effects, I can’t, I’m going to have to switch to something else. Can I take 2 weeks off and then switch?” You have that conversation with your doctor, you take those couple weeks off, 2 weeks is OK. And that way you get it out of your system and you see, oh, you know what that knee pain is from whatever I’ve been doing. Or that knee pain is from that estrogen pill. And now that that’s gone, oh, my thumb does feel better, I’m able to do my needle point again.

You can see how you feel off of it, then you switch to another one. There’s different ways for that to go.

If you’d like to consider holistic things. Many doctors don’t know much about it. It’s kind of like if we didn’t learn it, it doesn’t exist. But there are doctors who subscribe to holistic practices who can give you some advice. And there are naturopathic doctors, and especially integrative oncologists, that you could search for. And so you might start with the Society of Integrative Oncology. That link I put, remember that chart I put, I’m putting it in the chat.

These are practitioners who specialize in adjuncts to — they’re complements to, not alternatives to, and that’s the way you should think about this. It’s not Burger King where you can have it your way and you’re can do this, but not this, but not this. We all work together and complement. If you are changing your regimen, you should talk to your doctors about those changes, and you should talk about why you should do those. What is the data and the evidence behind it, and who are the practitioners who can help you to do that safely? Because many of our conventional oncologists don’t subscribe to these. And so you want to be very, very careful.

Avoid the snake oil, avoid the folks who are, you know, honestly, be very careful. Because if they’re making you choose between one or the other, that is in my opinion, not the way to go. I think that you can have your sea moss, and you can use your sea moss to help you detox from chemotherapy. It can work together safely, and find doctors who subscribe to that. Because we know this western medicine works. We know it can be toxic. But if your body can heal itself naturally, then surely it can heal itself from the effects of surgery and radiation and all these things. And how can you boost and support your body to do those things, should be your questions.

Ebony-Joy Igbinoba [01:00:02]

Thank you, Dr. Gary, any final thoughts?

Monique Gary, DO, MSc, FACS [01:00:06]

My final thoughts are keep asking all these questions, keep pushing and challenging your doctors out of our comfort zones, because these are not comfortable conversations for us. These are the ones where we start getting antsy and shifting on one foot and one hand it gets to the doorknob because we don’t know all the answers. But you can ask the questions and you can start to say, Doc, what does the regimen look like for me? If I want to change my diet or I’m worried about recurrence what’s a comprehensive way that we can address that? How do I know? What do I check for at home? Because here today I might feel OK, but in the middle of the night, how do I know that back pain isn’t something? When is back pain back pain and when is it recurrence? What should I be looking out for? Ask those types of questions so that you can better understand how do you source peace of mind.

Above all, prioritize your peace, because cancer happens. Whether you have 2% body fat and drink alkaline water and exercise seven days a week, or whether or not you smoked two packs a day for 20 years, it happens to everybody no matter what you do or don’t do. It’s not anything to blame yourself about. It’s things that you cannot control. And all you can do is move forward in as much empowerment as you can.

Ebony-Joy Igbinoba [01:01:19]

I really appreciate that.

When I started this journey in 2019 and I got that call, I’m actually sitting in the place. See, I’m going to cry.

I’m sitting in the place where I got the call, and my kids were 5 and 6 years old, just started kindergarten and first. And I’m sitting here at the same space 5 years later, speaking to you and hearing your story about your mother. Those are trailblazers I think, that have paved the way and LBBC being able to fly out to Philly and all the sponsors, I can’t thank enough. Because I tell you, it’s a journey beyond journeys. And if I have to be vulnerable and cry as much as I have been doing, but if it saves one more person and puts someone else at the seat to have a better chance, I’m going to keep doing it. So thank you all for providing this platform.

Monique Gary, DO, MSc, FACS [01:02:23]

I love that you said that and that you’re sitting right there in that same spot because it really is a full circle moment. And this is an example to the people who are watching. You don’t know what your life is going to end up looking like after cancer. You really don’t. But look at you sitting in the same seat. You sat in with a totally different message and a different mindset and a renewed sense of empowerment because it didn’t kill you. It didn’t break you because it can’t. Seriously nothing can. You are amazing.

Session II: Managing fear of breast cancer recurrence

Lynn Folkman [00:00:10]

I am excited to introduce you to today’s speaker, Dr. Maurade Gormley. Dr. Gormley is an assistant professor at the University of Connecticut School of Nursing. Drawing on her experience as an oncology nurse, Dr. Gormley’s research focuses on enhancing the psychosocial health and well-being of individuals impacted by cancer. For more information, you can go to read her full bio on lbbc.org.

Maurade Gormley, PhD, C-PNP [00:00:48]

The talk today is about fear of cancer recurrence, and it’s part of the series Navigating risk of recurrence after early-stage breast cancer.

A little background about myself. I am an assistant professor at the University of Connecticut School of Nursing. Prior to becoming a professor, I worked as an oncology nurse and a pediatric nurse practitioner.

I’ve always been passionate about oncology, but this passion was fundamentally shifted when I was diagnosed with ovarian cancer in my twenties while I was working as a pediatric oncology nurse. This caused a seismic shift in my life. And while the type of ovarian cancer that I had was highly curable, I was left feeling shocked, confused, and like I had been betrayed by my body at what I perceived to be a young and conceivably healthy age.

I experienced a lot of fear of cancer recurrence but didn’t realize that these feelings had an actual term until I began pursuing a PhD to study cancer survivorship. I read the literature as they described exactly what I had been feeling when my oncologist said, “You’re done. We’ll see you in 3 months.”

I felt this wave of fear, what would I do over the next 3 months without them? It felt like it was up to me to make sure that my cancer didn’t come back. It also felt like I immediately had to jump back into normal life like nothing had happened. I began to think that if I do this or that, if I eat the right things, avoid this or that, I can make sure that the cancer doesn’t come back. And I began to worry when I felt symptoms or sensations, could this be a sign of recurrence. And everything felt like it was a pre-cancer and a post-cancer world to me, like the person I was before would never be back.

It also felt like everyone around me fit into these two buckets, those who have cancer and those who don’t have cancer. And all I cared about at that moment was being in the category that did not.

But with time, things really improved. I began to process the trauma of the diagnosis and started to establish my new normal and how I could reframe my new identity as an oncology nurse. As I said, pursued a PhD in nursing research and focused my dissertation on fear of cancer recurrence among breast cancer survivors. A lot of my research has looked into how a fear of cancer recurrence differs among young women diagnosed with breast cancer, and what factors would increase the prevalence. I also examined how genomic tests such as the Oncotype DX tests may contribute to fear of cancer recurrence. And currently I’m funded by the NIH to develop a peer-led intervention for Black breast cancer survivors, who face tremendous disparities in mortality and psychosocial outcomes.

I’m looking forward to continuing this work and honored to be here to talk about fear of cancer recurrence. I hope to convey that over time, you know, this can improve. And while I do not expect to ever be completely free of fear, it has been 10 years and this experience no longer plays a significant role in shaping my sense of self, which is mostly now shaped by my family, career, and motherhood.

After presenting a little bit of that background, I just want to dive right into what is fear of cancer recurrence.

Fear of cancer recurrence is a well-recognized concept that describes the fear, worry, or concern about cancer recurring or spreading. And while there are tools or surveys to measure fear of cancer recurrence, there’s no universally accepted or gold standard way to measure it nor is there a well-established cutoff that says, this is severe, this is moderate, or this is mild. There are, however, questionnaires that are specific to breast cancer that can help us better understand if you’re experiencing mild, moderate, or severe fear of cancer recurrence. And more specifically, we can better understand the nature of the fear, what the fear is centered on, be it related to fear of death, fear of disruption to your role maybe as a mother or in your family, fear of disruption to your body image, or the need for more chemotherapy or surgery.

Maurade Gormley, PhD, C-PNP [00:05:07]

In terms of prevalence, approximately 50% of breast cancer survivors experience moderate to severe fear of cancer recurrence. And the rates are up to 70% among young adults. It can have a significant impact on well-being, contributing to anxiety, depression, distress, and overall poorer quality of life. And there are certain factors that we know influence the degree to which someone has fear of cancer recurrence. For example, age is a very important consideration when we think about who is at greatest risk of experiencing fear of cancer recurrence. Young women in particular may feel isolated and distressed by the diagnosis at a young age, as they may lack more established support networks or be juggling demands of family, work, and children. Or they may have concerns specifically about starting a family, advancing their career, or finding a partner.

Other factors, such as the stage at which you’re diagnosed with cancer, the treatment you receive, and other personal characteristics or experiences, can influence the degree of fear of cancer recurrence you have. But fundamentally, it’s really an incredibly nuanced concept, and any cancer survivor can experience it at any point along their journey.

There is some mixed evidence regarding its improvement with time, but most of the literature does support that it does improve with time since diagnosis.

That brings us to the question, what is a cancer survivor. The American Cancer Society defines a cancer survivor as someone starting at the time of diagnosis, however, the term survivor can really mean whatever you want it to be. In addition, it’s important to discuss when fear of cancer recurrence is most likely to arise, which typically occurs after the completion of treatment and during the transition to surveillance or maintenance therapy. This is when individuals often feel what we call “lost in transition” as they’re leaving this structured healthcare system that was dominated by frequent examinations and very frequent communication with your healthcare team. This transition period can be abrupt, and it’s when individuals typically begin to process their diagnosis and begin the process of establishing a new normal.

During the acute phases of treatment, individuals are often in this flight-or-fight stage, primarily focused on completing treatment. Then that abrupt transition at the end may provide the time and space to really start processing their experience, and that’s when the emergence of these adverse psychosocial symptoms can start to emerge.

That brings us to the question, what really is “normal.” But fear cancer recurrence is a normal response to a very challenging and traumatic event. And from an evolutionary perspective, fear can be an important thing because it keeps us alert to danger. However, excess fear can cause significant stress and impact your physical and mental health. As I mentioned, there’s not a gold standard measurement that indicates that you have fear of cancer recurrence. We definitely have tools to measure it, but there’s just not a gold standard measurement.

One definition that we have for fear of cancer recurrence that can try to help you identify whether or not you’re experiencing normal fear from this traumatic event or if you’re having something that might be more of a clinical level of fear of cancer recurrence proposes that fear of cancer recurrence is when you have high levels of at least three of the following characteristics for at least 3 consecutive months. That would be preoccupation with cancer recurring and worrying that is persistent and then hypervigilance or hypersensitivity to symptoms or sensations perceived to be indicative of a recurrence of cancer.

As a cancer survivor, there may be times that you experience an emotional trigger or have a strong emotional reaction to an event, a conversation or other stimulus, and these triggers can feel very distressing and make you feel like you were on an emotional roller coaster. It’s important to acknowledge that triggers are normal and in many circumstances they’re unavoidable. You can’t always predict what conversations will come up when you’re at a dinner party. This happened to me recently. You also can’t, or you shouldn’t, avoid your routine follow-up appointments.

Anxiety triggered by follow-up appointments in scans, such as a CT or an MRI, are common and they’ve been labeled as scanxiety. With scanxiety, you may feel as though you’re moving forward and focusing less on cancer, but then as you know an appointment is coming up or you know a scan is coming up, a surge of intrusive thoughts, doubts, or anxiety can arise.

Maurade Gormley, PhD, C-PNP [00:10:21]

Other triggers may include things like physical sensations, so feeling pain or having a headache, any sort of physical sensation that might trigger you to think: Could this be a recurrence? Certain smells, sometimes. It might be something that smells like the hospital, such as hand sanitizer. Then any external events, so things like hearing about someone else’s cancer diagnosis or watching a TV show where a character is diagnosed with cancer. And we’ll delve into this more when we’re discussing coping strategies, but recognizing emotional triggers is important for developing coping mechanisms.

If there are triggers that you can reasonably avoid, such as skipping a TV show or avoiding cancer survivor blogs, it’s important to do so. However, for unavoidable triggers, it may be helpful to plan for additional support during that time. For example, if you know you have a scan coming up, that would be an unavoidable trigger in some cases, and then you can build in support during that period.

How do you know when you may need more support to cope with fear of cancer recurrence? It can be difficult to determine when you are in need of more support to cope with fear of cancer recurrence as compared to when fear may just be a normal response to what you’ve been through. Some questions you may ask yourself are: Is the fear taking a toll on your physical and mental well-being? For example: Is anxiety, stress, or feelings of uncertainty causing fatigue, sleep disturbances, or difficulty concentrating? Have these emotions strained your relationship or made it challenging to engage in daily activities? Are you frequently seeking reassurance from family or friends? And are they finding it hard to support you effectively? Have you been withdrawing from social interactions or struggling to express your concerns to loved ones?

It’s also important to note that some people may be more likely to respond in an anxious manner, while others may be more likely to respond with symptoms of depression. Sometimes it can be difficult to answer these questions on your own, so this is a good time to reach out to your oncology team who might help determine if additional resources are necessary. They might be able to administer survey measures to determine if you’re experiencing clinical levels of anxiety, of depression. And then do that fear of cancer recurrence survey. Even though I mentioned it’s not a gold standard, we still do have tools that can give us a sense of what you’re going through.

Now we’re going to discuss how you can cope with fear of cancer recurrence. But first I just want to emphasize a disclaimer that I’m not a medical oncologist, nor am I a licensed therapist. A therapist is going to be the person who is best equipped to suggest a specific approach. However, I do want to discuss some of the most common approaches that may help.

First, coping with fear of cancer recurrence is not a one-size-fits-all approach. Effective coping may involve various approaches that are tailored to your needs and symptoms. Everyone is different, and, as I mentioned, some people may experience symptoms that are more on the anxious side and then others may experience symptoms that are more on the depressive side. So a therapist is really the best person who can tailor your treatment based on how you’re feeling.

Some examples of approaches include, but are not limited to, cognitive behavioral therapy, or CBT; mindfulness; or for some, their approach may be really focused on finding new meaning and growth from their experience, which often involves creating a new normal or rewriting your personal story that reflects the growth and renewed priorities that have emerged from your experience.

Cognitive behavioral therapy, or CBT, helps to identify and challenge negative thoughts or cognitive distortions. These occur when our brain twists reality or exaggerates problems, making them seem worse than they really are. These distorted ways of thinking can adversely affect our emotions and our behavior. For instance, one common distortion is black-and-white thinking, an all or nothing mindset where situations are viewed as either entirely good or completely bad, leaving no room for that nuance or middle ground. But if you work with somebody who specializes in CBT, they can help you adapt to a more nuanced and balanced approach.

Maurade Gormley, PhD, C-PNP [00:15:21]

Catastrophizing is similar to black-and-white thinking, but in this case, you expect the worst case scenario. For example, if you think “I have a headache, it must be a recurrence.” You might learn to recognize and label this as catastrophizing. This pattern often emerges during stress or anxiety. Instead, you might do something where you remind yourself, “OK, the most likely scenario is that I simply have a headache. I’ve experienced headaches before my breast cancer diagnosis. So it’s reasonable to assume that this is another typical headache and not a recurrence.”

You can then distance yourself from these thoughts and engage in distraction.

However, you can always decide if the headache persists beyond a certain number of days, you will plan to follow up with your primary care provider or your oncologist. But essentially, your goal is to identify the most likely scenario, reframe your thoughts by focusing on realistic and probable outcomes, rather than fixating on the worst-case scenario. And this approach can help reduce the emotional impact of the distressing thoughts, and promote a more balanced perspective.

Another approach is mindfulness, and there is evidence that mindfulness can reduce fear of cancer recurrence and improve numerous other adverse psychosocial outcomes. In mindfulness, you’re focusing on being fully present in the moment with acceptance and non-judgment. You engage in activities to try to calm the body, which can include meditation, deep breathing, progressive muscle relaxation, body scans, and yoga, to name a few. The goal in mindfulness is to regulate the physiologic or sensory processes that will influence our emotions and thoughts.

When it comes to managing anxiety and seeking reassurance, it is natural to look for support after a traumatic experience like being diagnosed with cancer. However, it’s important to recognize when reassurance seeking might do more harm than good, and then it might potentially intensify your anxiety and distress. Think of it kind of like adding fuel to a fire. Momentary relief of seeking reassurance may actually perpetuate the cycle. Ask yourself if the reassurance you seek is genuinely helping, or if it’s consuming your thoughts and straining your relationships. If the relief you feel is short-lived and leads to a desire for more reassurance, it may be time to shift focus. And then in those cases, practicing distress tolerance can be an effective strategy to help you self-regulate and break this cycle.

Cancer is a traumatic life event and it can really disrupt your sense of self, your identity, and your perceived role in the world. It can challenge your perception of your health, stability, and future plans, leading to a significant period of distress. However, it can also serve as a catalyst for personal growth, which has been coined as post-traumatic growth. Some may reevaluate life priorities or discover a deeper meaning in their experiences or a renewed sense of purpose, which can include things like changing a career to align with our passions or building new relationships or engaging in advocacy or support for others who are facing similar challenges. Additionally, the experience can help individuals appreciate the present moment and find strength in their resilience.

Another way to foster resilience and promote positive coping is through social support and strength in community. Spending time with friends, family, or participating in support groups can improve your sense of belonging by being with others who share your experience. This could include support groups that are in person or online. And ideally these groups are allowing individuals to share how they’re coping, offering advice, and providing validation and encouragement. However, it can be important to note that for some these groups can be an emotional trigger. So, social support does not always have to come from others who have faced similar experiences. Sometimes your social support can come from friends, family, or from your faith.

On that note, distraction and engagement can be an effective tool to prevent coping. It’s important to redirect your mind and provide a sense of purpose through distraction and engagement. This can include anything, but some examples, included here in the pictures, are things like art, hiking, gardening, writing, or music.

Maurade Gormley, PhD, C-PNP [00:20:15]

In terms of navigating survivorship, there are a few things that can help. It’s important to schedule regular checkups in accordance with the recommendations from your healthcare provider. You want to avoid a situation in which fear of cancer recurrence is resulting in avoidance behavior, and you’re avoiding your routine appointments. It’s important to communicate openly with your providers about any fears or concerns you’ve been experiencing. They should listen to these concerns and appropriately follow up with support resources.

That being said, sometimes developing a plan can help you feel a sense of control. Therefore, if you openly communicate with your provider, you can personalize your plan to your specific concerns.

It’s also important to seek support through whatever means is most appropriate for you, be it support groups, therapy, or time with family and friends. Prioritizing self-care will help promote a balanced life and improve your overall well-being. So getting exercise, eating healthy, and managing your stress, maybe through things like mindfulness or distraction. Don’t be afraid to advocate for yourself if you do not feel like your current concerns are being addressed. If you’re comfortable, some people may also want to recognize and celebrate milestones and progress that they’ve made. For many knowledge can be power. So staying informed on the latest advancements in your care can give you a sense of control.

Some practical tips for resources. Mindfulness can be an important tool to promote coping with fear of cancer recurrence, and these three mindfulness and meditation apps are good options for supporting various mindfulness resources such as guided meditation, they have support for sleep, and then other classes for wellness. Calm and Headspace do require a subscription, but Insight Timer has many free resources and access to a global mindfulness community.

In addition, we discussed the importance of working with a licensed therapist, if that’s what you need, if you need additional professional support. And these two resources, BetterHelp and Talkspace allow you to connect with a licensed therapist in an online format. So that is an option.

Researchers at the University of Calgary developed the Mindfulness-Based Cancer Recovery program. It’s based on mindfulness-based stress reduction principles, and they offer live and on-demand programs as well as an app with additional resources that are specific to cancer survivorship.

Lastly, some of my take-home messages or things that I’ve reflected upon or wish that I had known is that it is normal to experience fear of cancer recurrence after the diagnosis of cancer. However, it’s really important to identify when additional support is needed, such as when fear of cancer recurrence is interfering with your quality of life or your ability to complete your activities of daily living.

This can all feel like an emotional rollercoaster with unpredictable and distressing triggers. These emotional triggers can be particularly elevated before healthcare provider visits or scans, so learning to navigate these triggers is going to be a process. You’re going to have to identify what works, what does not work for you, and what your best coping strategies are. It’s important to identify and communicate with someone who is your support person through these difficult moments and emotional triggers.

And practice self-compassion. You’ve been through something very traumatic, but there is an opportunity for post-traumatic growth and positive changes related to your new normal. Thank you.

Lynn Folkman [00:24:13]

Thank you so much. Such great information. And I just wanted to say there’s really some wonderful support happening in the chat that I’ve been looking at. Some people were even saying just listening, they were a little triggered.

Can you sort of maybe speak to that? It was great that they got other support in the chat, but sometimes, to your point, you don’t know what your triggers are going to be. It seems like it’s maybe a trial-and-error type of thing.

Maurade Gormley, PhD, C-PNP [00:24:49]

It’s really hard to find that balance between putting yourself out there in that community where you know you can get support, like through this chat, but you’re also balancing that with you might be triggered.

I think what I would say to that is engage with these things within reason and practice those coping mechanisms, that distress tolerance, some of those kind of cognitive processes that I was talking about. Just because we’re talking about cancer right now does not mean that you have a cancer recurrence. It’s just at the forefront of your brain because we’re talking about it. You have to engage these things within reason and know yourself. Know your limits, know what works for you, know what’s best to avoid.

I’ve had that happen to me, where I’m watching a TV show and I love it, and then all of a sudden one of the characters is diagnosed with cancer and I’m like, “OK, I’m done. Done with that TV show. Can’t watch that anymore.”

Support groups can be very challenging for some people. So I would say proceed with those with caution. It can be very distressing when you’re hearing updates about different people within the support group. And sometimes you just don’t know when a trigger is going to come up. I was out at a dinner party last week when somebody started talking about something that totally triggered me, and I had to just kind of hold it in during that time. Then I sought out support the next day, got that quick little reassurance from a friend and that helped.

Lynn Folkman [00:26:51]

Yeah, and someone put in the chat about “pink-tober” being a trigger. I know a lot of our advocates that we work with, we say step back when you need to step back. It can be exhilarating and exhausting. Give yourself the kindness and the grace to step back when you need to do that.

I am 15 years out, and I know, for me, what I needed when I was really newly diagnosed, and when you talked a little bit about that time, how it does get better, but I think it almost seems like that’s trial-and-error too. For instance, when I was first diagnosed, after I sort of went through, I wanted to help other people. I volunteered on the helpline, and that was really meaningful for me. Now at this point that I’m further out, I don’t mean that wouldn’t be meaningful for me but wanting something different.

Can you talk about that survivorship trajectory? How things just change from that time?

Maurade Gormley, PhD, C-PNP [00:28:25]

A lot of evidence does support that all of this gets better in time. There’s that acute phase in survivorship where you’re in that fight-or-flight. You’re working on getting through your treatment, and you’re just focused on that.

Then it’s that period when you move into surveillance, that’s when a lot of the processing and the emotions can kind of come flooding in. That might be a time when maybe you do want to lean into community. You’re just experiencing this. Being around other people who have gone through a similar experience as you might be very helpful, to know that there are other people out there. It was for me. But then as time goes on, it might be something that’s not as helpful. You’re adjusting to that new normal. So engaging in things like going to support groups or like you said, working with LBBC, it may not be at the forefront of your anxiety. You might start living your new life. And then that’s where things like being exposed to an emotional trigger might be a little bit more alarming. Because you’re in that mode where you’re not thinking about it as much, and then all of a sudden a trigger comes and everything comes flooding back and is unexpected.

Lynn Folkman [00:30:00]

I know when I started volunteering on the helpline, my sister was really concerned. She was like, “Is that going to be good for you?” And I was like, Yeah. It will be good for me.

But I think sometimes family members and loved ones that really care about you, they’re still trying to protect you, but only you know what is going to be best for you and resonate.

There was a question that came in. Is it normal to feel something like survivor guilt after getting good results on a follow-up appointment? I am happy that the cancer is not back, but a family member recently passed away.

She’s feeling guilty for sort of being happy within that. Can you speak to that?

Maurade Gormley, PhD, C-PNP [00:30:56]

That is incredibly normal and incredibly hard to navigate.

I personally experienced that as well. When I was diagnosed with ovarian cancer, it is a very aggressive type of cancer, and I was diagnosed with something that was more highly curable. So when I did engage with support groups and other support mechanisms, it was incredibly hard for me to read all of the stories and see how everybody had a very different experience from me. And I felt a lot of survivor guilt. I felt like I wasn’t sure if I necessarily belonged within that community. But I was open, and I was honest about that. Everybody was incredibly supportive making me feel like there’s absolutely nothing to be guilty about.

I would say to that person, I’m so sorry with what you’re going through. And then I would say that there’s absolutely no reason for you to feel guilty. That person is happy for you. And sometimes cancer just sucks. There’s no rhyme or reason, and to take off my academic hat, sometimes it just sucks. It just is so unfair. And that just makes all of this so challenging.

Lynn Folkman [00:32:44]

Thank you.

I know you touched a little bit about finding a therapist, I think in your slides, but someone had asked. Should you specifically look to find a cancer experience therapist? And if so, where would you start? Do you have any sort of direction for that?

Maurade Gormley, PhD, C-PNP [00:33:06]

I think they are going to provide some resources in the chat, but things like cancercare.org is an organization that will connect you with licensed social workers or therapists that have experience in cancer.

There are other cancer organizations that I sent out, some of them are specific to young adult breast cancer survivors, some of them are specific to Black breast cancer survivors. So there are organizations that do provide therapy specifically for cancer. And that other resource that I shared with a mindfulness-based cancer recovery program does have a lot of sources that are specific to cancer as well.

Lynn Folkman [00:34:02]

Someone has a question. Is there information about how to speak to children about fear of recurrence? I feel like my kids’ PTSD has them keeping their feelings in, but I know they worry.

Maurade Gormley, PhD, C-PNP [00:34:20]

I did a study on young adult breast cancer survivors and fear of cancer recurrence. And motherhood, as you can imagine, was a very central component to that in terms of explaining some of the elevated fear of cancer recurrence among young adult breast cancer survivors.

It was divided by children’s age. So that is something to consider. The older children were able to understand what was going on a bit more. And the younger children weren’t really able to fully understand what was going on. So I think you do have to tailor it to the children’s age, and you have to also know your children, how much honesty they can handle. But I do think honesty is always the best policy. Having an open communication with them to the best of your ability without triggering them. Just saying that I was diagnosed with cancer, this is what my doctors say, I have a low risk of recurrence — if that’s the case, for example — but it’s still something that I’m really worried about. I love you so much, part of what I’m worried about is that I want to be there for you.

I think children really do appreciate honesty in these situations, without feeling like you are triggering them or giving them a little bit too much. But of course, it’s age appropriate. So answering that question is a little challenging because in this situation, I don’t know the specific circumstances or the children’s ages, but that would be the best advice that I would have.

Or to work with a therapist. You can both go to a therapist and talk through some of the things, and they can support you through that conversation.

Lynn Folkman [00:36:29]

Thank you.

Someone asked: Knowing that there is no right answer, how much time passed for you before recurrence wasn’t on your mind daily?

Maurade Gormley, PhD, C-PNP [00:36:46]

For me, I would say about 5 years. This is the first time I’ve ever publicly disclosed my diagnosis on a recorded session. And what’s interesting for me that I’ve seen in becoming a mother is I’ve been making friends with my children’s friend’s parents. And in that process, there are so many of them that I’ve known for 4 or 5 years, and all of a sudden a conversation will come up and I’ll be like, “Did I ever tell you that I had ovarian cancer 10 years ago?”

That’s been something that’s really interesting for me, because it used to be when I was closer to the diagnosis, I couldn’t really get very far in a conversation without it coming up. And so with time, like I kind of said in the beginning, it’s become less a part of who I really am. It’s changed me forever, but it’s become less a part of my story that I present in a daily basis. And the literature does support 5 years, with fear of cancer recurrence improving after 5 years.

But like I said, these emotional triggers, they can show up at any time, completely unexpected. So it may not necessarily be something that goes away completely. But I think you begin to have a little bit more faith, and you learn to process those distressing moments a little bit better. For example, it used to be if I felt anything, like a lump, I always thought “What if it’s a recurrence?” Now my brain is better able to process, “OK, we’ve seen this a million times. This has happened a bunch of times, it’s this or that. It will probably be gone in 2 days.” And then it is. If it’s not gone in 2 days, then I will talk to somebody. So I think that really helps.

Lynn Folkman [00:39:03]

I so like what you said, to put boundaries around it. Like, I’m experiencing this, and if it’s not gone in this amount of time, I’m going to take this action.

I know for me, it’s interesting, that 5-year mark. Sometimes you get that from the oncologist too. To say, around 5 years, there seems to be some data too.

I think for me as well, if it wasn’t in my head daily, probably 5 years. Now, again, I’m also working in breast cancer with advocates. But I think, as time goes by, it does start to dissipate.

However, there have been times where I have been triggered, where I didn’t even see it coming. I really was sort of blindsided. And then I had like this internal discussion to say, “Really, you didn’t see that coming? Why didn’t you see that coming?” Because I can see it coming when I go for my annual MRI. That sort of happens. There’s things that are like “known quantities,” where you anticipate it, and then there’s others where you’re like, “Wow. What just happened there?”

Then you learn. You go like, OK, now I have that information. I’ve got more information about it. I understand now that that’s a trigger. I didn’t know it was a trigger before.

Maurade Gormley, PhD, C-PNP [00:40:58]

Yeah. It’s important to think about the triggers that you can reasonably avoid, and have a plan for the triggers that you can’t avoid. Finding that balance is important, but it’s a process. It’s going to take a while to learn what is a trigger.

It might be a little bit of trial-and-error as you go to a support group. Is this a trigger or is this helping me? What boundaries do I have to set around that? How deep into the blogs should I get? Things like that. And I think it will take time to figure out what works best for you when you are triggered.

I did talk a bit about finding that balance with reassurance seeking. You don’t want to get to the point where you’re asking somebody 30 times a day, like, “Oh, do you think it’s this? Or do you think it’s that?” But it is OK to seek reassurance. Especially in the beginning. It’s very appropriate and very normal to really struggle with this in the beginning. And people are there to support you. They should be there to support you. Your healthcare provider team should be there to support you and really guide you through this.

You can feel very lost in transition after your treatment is done. It’s very scary to leave and have somebody say, “OK, see you in 6 months!” “See you in a year!” And you’re like, What? What am I supposed to do in that year? I’m used to seeing you every 2 weeks. I’m used to having you do a physical exam. I’m used to getting scans constantly. And so taking that leap of faith to enter into that new world, into that new transition, is very challenging. But don’t be afraid to lean into your healthcare providers. They should be there to support you and help you navigate through these fears and through what is a normal symptom to feel, what isn’t, and when you know additional resources are needed.

Lynn Folkman [00:43:08]

And really to be your own best advocate. And push!

It’s OK to go back to your healthcare provider. Maybe I’ll speak for myself, I don’t want to be a bother. I don’t want to bother them. But that is what they’re there for, for you to get that reassurance. And there’s so many wonderful resources, whether it’s virtual groups or Facebook groups. We have our closed Facebook groups and I think for some people it’s super helpful to get all that information and for other people, it’s not. It’s fear inducing. I think even on our helpline, when we train our helpline volunteers, yes, they’re there to be matched with someone similar, but it’s also to say, this is my experience and everyone’s different because everyone is different.

Let me ask, someone had a question. Can you talk a little bit more about distress tolerance?

Maurade Gormley, PhD, C-PNP [00:44:30]

That is definitely something that therapists are able to work you through. But distress tolerance is the idea of labeling the thought.

If I went back through this example of I have a headache. Could it be a recurrence? Sitting with that. Labeling it. Saying this could be a cognitive distortion. I’m telling that story of like, OK, I’m going into that black-and-white thinking again. Sitting with it, breathing, going into your coping mechanism, be it do you need meditation at that point? Is it a distraction? Is it a physiologic stimulation? Like sometimes people say smelling something, smelling, touch, cold exposure, whatever works for you to help you sit through those feelings, label those feelings. Thoughts are not facts. Just because you’re thinking could I have a recurrence, that does not mean it’s true.

The more that you can train yourself to sit through those distressing thoughts, label them, and then distance yourself from them, the better able you’ll be able to tolerate. It’s that whole idea of like, before we used to say, let’s just push down our emotions. Just hide them, stuff them away. And now it’s better for us to kind of sit through them, work through them, label them, and then try to distance ourself from them.

But specifically, a therapist is going to be much better equipped to walk you through those specific steps.

Lynn Folkman [00:46:18]

There’s a question about, earlier in your presentation you mentioned genomic testing and possibly causing more anxiety. Can you please explain a little bit more about that?

Maurade Gormley, PhD, C-PNP [00:46:29]

I actually have a slide about that in case anybody asks, but I just have it in my notes. Essentially my doctoral research was all about Oncotype DX testing and fear of cancer recurrence.

Let me go back in case some folks don’t know what the Oncotype DX test is. It looks at specific genomic markers of your breast cancer tumor. It’s not a marker like a BRCA gene. It’s looking at the genomics of the breast tumor specifically. And based on those markers, it can tell you whether or not you have a low, intermediate, or a high risk of recurrence. Based on that, they make treatment recommendations. You can avoid chemotherapy, you should have chemotherapy, or you’re kind of in that middle and we’re not sure what to do.

I was really interested in whether or not being told that you have a higher risk of recurrence would increase risk of recurrence. And what we found is that people did have a higher fear of cancer recurrence if they had a high risk from genomic testing results. So they were significantly correlated, but that does not mean that every person with a high risk had high fear and every person with a low risk had low fear. For example, we found that they were associated, but the best predictors of fear of cancer recurrence were their level of anxiety and their illness representation. So that was their perceived consequences of having a recurrence and their emotional response to their diagnosis of breast cancer.

Essentially what we can say from that is, yes, being told that you have a high risk of recurrence from a genomic test may mean that you have higher fear of cancer recurrence. But we did qualitative interviews as well, so interviews with some of the participants, and it’s really incredibly nuanced. There are people that have an incredibly low risk of recurrence from genomic testing, but they are experiencing severely high fear of cancer recurrence. Then there are people that have a really high risk of recurrence, but they feel like, wow, this genomic test told me I have a high risk so I got chemotherapy because of that and I know I made the right decision. And some people just are better able to cope with this.

I think for some of the people that maybe have that really high fear of cancer recurrence, but low risk, it could be things like a lot of them were young mothers and they just felt so much pressure to prevent a recurrence.

So not a perfect answer in terms of, again, the answer for all of these things are everything’s very individualized. Everything’s very nuanced.

Lynn Folkman [00:49:56]

Yeah. It’s almost like you just need, it’s almost like you need a lot of tools in your toolbox and you test out those tools to find what works for you. And that’s going to be it. Like you said in one of the slides, it’s not a one-size-fits-all.

There was a question. How do you approach relationship changes that arise out of cancer treatment? I’ve ended some friendships. I’ve gone no contact with some family, realizing some people were very unsupportive. I also have a friend that I want to keep, who is a natural born catastrophizer that I’ve had to limit my contact with. I just feel I’ve got to be ruthless about minimizing stressors in my life. Any advice?

Maurade Gormley, PhD, C-PNP [00:50:46]

That’s really hard. And I’m sorry that you’re experiencing that. I suspect you’re not alone in feeling that way. Sometimes this can be this transformative experience. It makes you question your existing relationships. It gives you an entirely new perspective on life, on who you are, changes your priorities. And so I would suspect that you’re very much not alone in feeling like: OK, maybe some people’s true colors have come out, or maybe some people just aren’t equipped to support me and meet me where I need them to be. And so they’re not the right person for me to focus my attention and my time on at this moment.

It’s very normal and does happen where you have a friend who maybe is triggering you, or it’s not a productive conversation or relationship. What you could do is one of two things. You could talk to the person and say, “Listen, I’ve been through this. I do feel really triggered when you talk about x, y, or z. Or when you say x, y, and z to me.” You’re giving them an opportunity to kind of fix and repair some of the ways in which they’re communicating that might be triggering to you.

Otherwise, you can just slowly distance yourself from that person and there might be a natural resolution to that friendship. But I do think for some people you’re given this new perspective in life, and it is more than appropriate to reprioritize the people who are supportive to you, are important to you, and who are worth investing your precious time in.

Lynn Folkman [00:52:48]

It’s so hard. When I was in active treatment, I had a dear, dear friend, and she just wasn’t supportive. And she didn’t know how to be supportive. She was one of my closest friends. And I just had an honest heart-to-heart and I was like, “I’ve got to talk to you.” I was like, here you go, here’s what it is. And this was a really hard conversation for me because I am not confrontational, that’s a confrontation to me. But I couldn’t not say anything. I had to say something. And at that point, I didn’t really know what our would be or would not be.

We did get through it and we changed, but I really said, this is what I need from you. And like I said, it could have gone either way.

There’s another question. Do you have any advice for women who feel like they can’t move forward because of fear of recurrence? For example, I’m a young mother and I was planning on having another baby before being diagnosed. My doctor told me to get excited about the end of treatment and that recurrence risk is low, but they don’t recommend getting pregnant again for several years because the highest chance of recurrence happens within the first few years. I think, how do you move forward within that?

Maurade Gormley, PhD, C-PNP [00:54:16]

Move forward, not necessarily with the pregnancy.

Lynn Folkman [00:54:21]

I think more like the real fear of recurrence. And I know she’s specifically talking about her individual experience, but I think this is more of a general question. What’s the first step you take you feel like I am just living in this fear of recurrence.

Maurade Gormley, PhD, C-PNP [00:54:47]

Absolutely therapy. Working with a therapist who is going to identify the best approach for you, be it cognitive behavioral therapy and there’s other approaches that you can do that the therapist will determine. You could also just start, in the interim, with some mindfulness, leaning into support from others, speaking to your oncologist. Getting that reassurance from your oncologist is totally appropriate. Developing a plan with them so that you feel like, “OK, I’m communicating to you that I’m experiencing a lot of fear of cancer recurrence. Talk to me about my specific diagnosis, my specific risks. What does this look like? How often am I going to be coming in? When should I call? What’s normal? What’s abnormal?”

Sometimes knowledge can be power in those situations where I think this person may feel very lost in transition. You’re going from that kind of structured healthcare system to this unstructured. So I would recommend going back to your oncology team, expressing that this is something that’s going on, and you may feel a sense of relief if you know you have a plan with your oncologist.

For example, for me, I had blood tests done every 3 months and then I had a CT scan at 6 months. And then every 6 months I saw the oncologist. Then you slowly change and move those things out. But I had a conversation with my oncologist, because I really wanted to be a parent. And I felt like, OK, if this recurs, I’m not going to be able to do that. So I was very focused on trying to prevent a recurrence, but I felt like in conversation with my oncologist, he could say to me, I got you. Like, we got this plan. If we see this LDH marker going up, we know that we’ll do this or we’ll do that. Like I’ve created a plan for you where, where I’m going to keep track of this and I got you.

So that’s one approach. Going back to your oncology team.

Leaning into your support community. Distraction, getting out, getting active, leaning into your hobbies, as much as you can distract yourself the better. And working through those moments when you do feel really distressed. What is it that’s bringing you down from that fear? Is it mindfulness that’s bringing you down? Is it a walk that’s helping to bring you down? Is it calling a friend? Is it getting out in the sun? What are some of the things that can calm you down from those elevations of fear?

And absolutely working with a therapist who’s going to kind of get to know how your brain is functioning and then get to know what the best approach for you is. Is it cognitive behavioral therapy and working through with those scenarios?

Lynn Folkman [00:58:18]

I like that laying out the plan so that you have more information and you know what’s coming. Someone used a term in here and I think that would mitigate emotional whiplash. I feel like having those steps, you have less of that shock of “see you in 6 months” when you don’t even know what’s in between month one and month six before you come back.

One other question. I want to ask this, and if we don’t have information on it, it’s OK. How about management of chronic stress as a preventative to recurrence? Is there a correlation?

Maurade Gormley, PhD, C-PNP [00:59:17]

This was actually what I wanted to study my dissertation on. I really wanted to look at fear of cancer recurrence and markers of chronic stress, things like cortisol, and whether some of those things could increase the risk of recurrence.

We know, and we don’t know. We know that stress wreaks habits on our body. So we do know that. Do we know for certain that it increases the risk of recurrence? No, definitely not. We can’t say that definitively yet. But does it help to mitigate stress in that kind of survivorship period where you’re done with treatment? Yes, absolutely. But it’s one of those catch-22s where you’re telling me to not stress because stress could be harming my body but now I’m stressing about it harming my body.

So I try to be careful with how I talk about that, because I was somebody who was very stressed in the survivorship period. I kept telling myself like, “Don’t stress so much. This is not going to be good for you if you’re, if you’re stressing.” But I still think it is good to have that knowledge because it could be the thing that really pushes you to try to take care of yourself, prioritize your self-care. There’s any reason to really take care of yourself, be it for your family, for your friends, for your loved one. Also try to take care of yourself because you want to be good to your body.

Lynn Folkman [01:01:18]

That was the last question that we had, but I just wanted to see, if there any last final comments that you want to make before we sort of close out our program for the evening.

Maurade Gormley, PhD, C-PNP [01:01:34]

No. I wish I could have seen this chat because I know there’s a lot of activity in it.

I want to thank everybody for coming. It was really nice to be able to do this. And I’m sending lots of love to everybody. I really hope everybody’s doing OK. I know that this can be a hard thing to talk about, but you did a hard thing, and you’re here. Take care of yourself tonight. Get some extra rest. Lean into things that make you feel good. Thank you so much.