Reflecting on Triple Negative and its Gray Areas

This is a follow up podcast episode to last week's in which I spoke to my friend Marquita Bass about her triple negative breast cancer diagnosis. I felt there was a little more to say on this subject before moving on.

 

Links:

In the podcast, I promised to provide resources in the show notes for learning more about personalized medicine in breast cancer. Here are my favorite youtube video on this topic: https://youtu.be/QS-1HZr-trg?si=A10SR7cE20tCMYPB

 

I mentioned that there are a lot of emerging biomarkers now, and here's a link to a LBCA youtube video that lists them and the various tests that measure them. Biggest lists are at minutes 23 and 36 of this video: https://youtu.be/2MOWI06uRak?si=3jXTllFN0aUNZh26 

 

Dr. Jason Fung’s book Cancer Code is here: https://www.powells.com/book/-9780062894007/7-0?gad_source=1&gclid=CjwKCAjwnK60BhA9EiwAmpHZwzwK6tUBXHYzhsKfvRd8XEDocBN6k0R3GwnXwxxmRT0kIuHhXZUTRxoCdiUQAvD_BwE

 

A brief video overview by Dr. Liz O’Riordan of the current state of affairs for TNBC: https://youtu.be/9NK_ZNoYGPM?si=xTRO6u_5xX9jV0DW

 

Transcript:

Today's episode is going to be more educational in nature. I'm making a decision at this point in the podcast to be a little more intentional in my mission to help to educate and not just entertain. I feel like when I started this journey as a new breast cancer survivor and I would log in and listen to talks or podcasts or stories, a lot of stuff went over my head and I don't want to be that kind of podcast that just assumes people are going to go and find the right resources and educate themselves.

I think for me, when I heard terms like even “Metastatic” or “Triple Negative,” the first few times I heard them, I was overwhelmed and I didn't feel like I could add those things to my plate. And I think if I had had someone that could explain them really simply and briefly, that it would have really helped me at the early part of my process to help define how much just very similar we all are.

It's not that we're that different with different diagnoses. I think mostly we're the same and it's important to know that at the offset because then you don't feel isolated from other groups of survivors. So because of all that, I'm deciding to do a little halt, a little pause, and to stop and talk about some of the terms and definitions and ideas that Marquita and I briefly referred to in my last episode. So if you haven't heard that episode with Marquita, it's a lengthy one, but it's a really important one talking about triple negative breast cancer, I know most of my listeners and fans out there, at least from my YouTube following are brand new to this community.

And, you know, necessarily so—there are people looking for information who need it desperately at the very beginning. And I don't want to be part of that elitist club of advocates who know everything and just kind of do that name dropping thing that's so irritating and requires you to go out and do your own research and find out what these things are that I'm talking about. So that's what this episode and maybe even a lot of future episodes will be for. I'm going to do some solo episodes just to keep folks a little bit more updated on some of the things we talk about in the interview episodes.

So the things I want to talk about today are TNBC which is the abbreviated name that we give triple negative breast cancer, what it is and the risks that it poses and the ways that it makes it hard to live with this diagnosis… and talk a little bit about some of the lifestyle references that Marquita made about her decisions to change her diet and stress, levels as a way of treating potential recurrence... talk a little bit about our relationships with our oncologist because Marquita found such a wonderful one and yet she only had him for a few years. And then I’m going to talk a little bit about testing and I'm just going to show you some resources in the show notes about testing, because that could be a real rabbit hole that I don't want to go down because I'm not the expert. But the testing options, especially genomic testing, is becoming much more available, much more affordable, and there are so many elements that you can pursue in this area. It's kind of exciting.

So let's start with talking about triple negative and what makes it unique. Because I think that this is really important to know the really basic stuff. So triple negative is referring to the three markers. The first two are hormone status, hormone receptor status, progesterone and estrogen. Estrogen being the key treatable one at this point in time. And then the third marker is referring to something called HER2, which is a protein, which also is at the cellular level. It's sitting on the cell, and it's a growth factor as well. I'm not going to go into growth factors. It's a real area of interest of mine, so it's hard not to. But I will refer you to my favorite kind of biology of cancer user handbook for patients, which is a cancer, not a breast cancer book, but it's brief—it's only 300 pages long and it's made for a patient to understand. It's made for an educated patient to understand. So, you know, if you've had some college science, you'll be able to understand it. Really, really important book, I think, for most cancer survivors to just look at your disease and understand it well and look at what you might be looking into more in the future if it comes back… And that is the book called Cancer Code by Jason Fung. Dr. Jason Fung just came out in 2020. It's very up to date. All very recent evidence, um, he shares a lot of scientific information, very much backed by science. It is not a hippy dippy, alternative book in any sense of the word. Although, Dr. Jason Fung is respected by integrative doctors as well as regular medical doctors. So he's right there in the middle of that integrative bridge or connection, which I love. So yeah, get that book if you're interested in the chapter on growth factors, because I think it's a really interesting thing to know about and we'll talk about it more in the podcast, I'm sure.

But that HER2 factor, that HER2 marker is the third part of that trio that makes up triple negative. And the reason triple negative is so remarkable and it is talked about with kind of drama and hushed tones is that it is a little more rare. It is only 15 percent of breast cancer survivors that have triple negative. Very much—pretty much exactly the same amount as lobular patients—although only one percent of triple negative patients are Lobular patients. So they are mostly Ductal patients. You know, almost all of them are Ductal, in, in terms of the type of cancer.

And as Marquita referred to, it is true that triple negative is a multifaceted disease. It is a subtype of breast cancer and it has its own subtypes. So, not every breast cancer survivor who is triple negative is going to have the same things true about their cancer. So, it is easy to make things black and white and categorize. And that is where we get in trouble with triple negative because not all of them are the same. Some of them are very aggressive. Some of them are not aggressive at all. Some of them are very treatable with chemo, as Marquita was saying, and, you know, a small minority of them are not as treatable with chemo. So it is a lot of gray area.

It is not as scary as it is made out to be, especially in the early stages. As you can see by Marquita's testimony in her life, she has not been oppressed by this disease since her diagnosis. with it 12 years ago, because she had a non aggressive type and it was very early stage when she caught it. So she is among some of the, the most successful stories that you'll hear about TNBC.

But another part of a successful story you'll hear about TNBC is that nowadays we treat it with adjuvant chemotherapy. So the clinicians will discuss taking chemo before having any kind of surgery, whether it's lumpectomy or mastectomy. And that wasn't always the case—probably not when Marquita was diagnosed 12 years ago.

And because of that, we've been able to see evidence that chemo really does work very well with most TNBC patients. In fact, many of them get a pathological complete response, which means the chemo made their tumor disappear before they even got surgery. And when you wait to have surgery after chemo, you could see how effective the chemo was very, very well because you get to see the area of the breast tissue that the tumor used to live in and you can look at it under a microscope and see just how gone that cancer is. And TNBC is one of the cancers—the breast cancer types—that does respond really well in most cases to chemotherapy. And that's why it was so stunning to me to hear Marquita's story that she had declined chemo. When you hear her tell her story, if you haven't heard it yet, you'll understand that it does make sense because like I said, hers was non aggressive and it was very early stage. It was very small. It was the size of an M& M, a small M& M, not a peanut M& M! So she had a lot of reasons to take that risk and to be that guinea pig for the rest of us to see that it is possible for a TNBC client to live 12 years without any chemo, which I think is just a really remarkable story. And she did it with the blessing of her oncologist, by the way.

So talking a little bit about the side effects of chemo, I think this is a topic that gets very overlooked and I'm so glad that Marquita brings it up. It is a very controversial. and very emotional topic. None of us want to take chemo. Many of us have to. There's just no choice. Two out of three of her doctors, well, three out of three of her doctors did recommend chemo and only one out of the three doctors, medical oncologists that she spoke to was willing to take her no for an answer and actually partnered with her in that decision making process, which I just think was the most beautiful part of her story.

He was not afraid of her not taking chemo. In fact, he could see the value of her regret matrix. He presented her with a regret matrix, which I just loved, loved that part of her story. And that allowed her to make her decision with firmness and conviction and him to support her in that. And the reality is that chemo is not without costs. It has a lot of side effects. You know, just that the trauma of having poisoned yourself voluntarily, that takes a lot of recovery psychologically. And also the fact that you get a lot of support through chemo because you're going in and you're seeing clinicians, nurses, support people every day in some cases, every week in other cases. And then that support system drops off and that's traumatic too. So there's a lot of psychological issues with chemo and we'll talk more about that in the future, but I just want to be able to talk freely about some of these things that we take for granted about chemo that—especially with triple negative—it's always assumed to be a good idea to take chemo.

And the science says that it isn't always necessary. And I'm just so excited that Marquita's written that down in her book. And people are reading that story because that part of the gray area needs to be shown light on a little bit more than it is.

So talking a little bit about some of the lifestyle stuff that came up with Marquita: I'm a nutritionist. I became a nutritionist after my first two cancer scares. I had polyps in my uterus. I had, you know, a shadow in my left breast ten years ago or more maybe 11 now and I became a nutritionist because I thought, like many patients do, that nutrition is one of the things that can save you from cancer. Now in hindsight, I see that it is one of the lesser things—it's definitely a factor for sure—but I think that exercise is much stronger in terms of evidence—scientific evidence—to prevent and keep cancer at bay once you've had it.

So, nutrition is, is a messy thing, even though I do guide people through their own particular nutrition plans on a weekly basis. I get a little bit scared when I hear patients saying that their doctor recommended a vegan or low fat diet. I just want to clarify that that is not scientifically proven and I, as a nutritionist who's recovering from cancer, do not have a low fat diet at all, and I do not have a vegan diet, especially because of my age. I'm entering menopause. People who are entering menopause, they need protein big time, and you can't get protein very well from non animal sources. So we do need to be careful about the quality of our protein. I will give that caveat.

But then we talked about stress, and this is an area where Marquita and I do agree, and her doctor and I do agree. I think stress is becoming more and more scientifically validated as a huge, huge factor in the risk of any kind of cancer. Because, we have seen scientifically that stress, chronic stress especially, creates inflammation in the body and inflammation is a habitat where cancer thrives.

So, stress, yes, probably a little bit more plausible as, something to work on, something to change your stress management. Just your busyness, just frantic-ness. As women especially, we tend to get pretty frantic, especially in certain times of our lives when we're caring for either children or elders.

So yeah, I've worked a ton on that myself and I think it's made a huge difference. So that's my little lifestyle commentary. There will be much more. I love to talk about population based studies, and I will talk about one thing with triple negative on that level.

I forgot to say a couple of things about triple negative that It hits some vulnerable populations the most. It hits African American and Hispanic communities or Latina communities the most, unfortunately, which are under-served by medical systems generally already. Also it is very common that it strikes younger women. And, so, younger women are more vulnerable because they have, you know, longer to live with this cancer once they're hit with it the first time. And then, thirdly, it is mostly coming toward women who have the BRCA mutation. So the mutation in their genetics that makes them less strong. BRCA is a strengthening gene. It is giving you more ammunition against cancer. So when you have a BRCA mutation, it is taking away from that strength. So BRCA is not a bad thing, but people with the mutation have a weakness. People with the BRCA mutation generally get triple negative breast cancer a little more often. Which can be a, a hopeful thing in the end because we've discovered a couple of drugs that can treat triple negative patients. Now that we know about BRCA, we can treat them with a BRCA therapy. So PARP inhibitors is the one main way that that happens. And then there's a new drug that can actually be given to triple negative patients when they have aggressive types of cancer. And that's called Keytruda. It does have a lot of side effects. It is a very new drug. It is something we're still learning about.

But the lifestyle factor I wanted to talk about with regard to triple negative or TNBC patients is an environmental toxin called formaldehyde. There has been one really compelling population study. When I say population study, it means it's not a super conclusive or causal-proof kind of a study, but it does show that it's likely that, formaldehyde is a factor in a lot of triple negative patients.

So a lot of them were probably exposed during the seventies and eighties when formaldehyde was used in building supplies. And that's with a couple of studies. main one was in Taiwan. So also could be a combination of formaldehyde and other toxins. People in Taiwan eat a lot of rice and rice can have a lot of metalo-estrogens. So, it could be a kind of a stacking of effects of environmental toxins in that case. But I thought that was interesting and I thought I would share that.

Marquita and I talked about tests and breast cancer tests and the main one that we were referring to were, were, uh, a kind of test called genomic tests. And these are genetic tests, but they are different than the kind of genetic testing that we do as a breast cancer patient to find out if we have BRCA, for example.

So genetic testing is looking at the genes that you've inherited from your parents and the genes that you carry all your life in all your cells. They're like a blueprint that you carry around and your cells just replicate that genetic pattern. Genomic testing is something that you're looking at in a particular part of your body, or in this case, a tumor that has been growing in your body.

And genomic testing is a little more complex because the characteristics of your tumor in terms of the mutations and the genes can change. And so genomic testing is a little bit harder to get right, and the science is still being developed for it. It's not perfect with breast cancer.

But there are some tools that we can viably use now, and I think that they show a lot of promise and I'm excited to tell people about them. The one that Marquita and I talked about specifically was Signatera, and that is one that requires a large enough tumor sample that you can kind of study the genes in your tumor.

I myself did not have a large enough tumor sample to do Signatera, and I was heartbroken to find that out because I really wanted to be that guinea pig. Marquita and I talked about some of the tricky parts of testing, especially genomic testing, which allow you to find out a little more about your tumor and the cells in your blood that are floating around and then getting killed by your immune system, which are called circulating tumor cells. Finding out a little bit too much... it can be anxiety producing.

And most patients probably, if they were fully educated about these tests, would choose not to, to get the test run because they can be really worrying. You can find out that you've got a high level of tumor count one day in your blood, and maybe the next day it would be low, and so you got worried for nothing. And after all, the immune system is blasting those little cells out of your bloodstream anyway, so they're not really that threatening. So it takes a lot of education to get a patient well informed enough to really appreciate what some of these tests will provide. And for that reason, they are usually only run on later stage or metastatic patients, and they're very useful in that case. They can really inform the choice of therapies, the drugs that you use to eradicate those later stage cancers, or at least tame them and get them down. So, for an early stage patient like myself or Marquita to take a Signatera test is a little different because we're not dealing with active, invasive, or threatening cancer.

Our surgery got that taken care of. So we don't really need to be monitoring but some of us want to, and since Signatera is a test that has been shown to be viable and reliable, and clinicians really respect it, it's kind of tempting to find out what's going on in there. And so Marquita and I both are, are kind of on that edge, and I think she's deciding whether she's going to take it. Maybe I'll have her back to talk about whether she did take the test.

Tumor markers are the other test that she and I talked about. I asked her if she was getting tumor markers run and she said no. And I am because I've insisted on it and that's because I saw how high my mom's tumor markers were right before she died of metastatic breast cancer. And I was pretty mad that nobody had run those tumor markers in the last couple of years to see that she was getting metastatic breast cancer. So that's kind of my, my reasoning for insisting on getting tumor markers. It's the same thing—it can provide a lot of anxiety unnecessarily if they are getting a little high, but they're not super high, what do you do? There's nothing you can do, like Marquita was saying.

So I still want that information because my mom didn't get it and she could have known sooner that she was dying if she had gotten it. And so I'm a little bit biased in favor of tumor markers. I also have seen that because I have Lobular, or I did have Lobular cancer, I've seen Lobular patients talk about having no indication that their Lobular cancer was coming back until they got a tumor marker panel run, because Lobular cancer is impossible to see in most scanning machines and modalities.

So it's a little bit different for us Lobular patients-- maybe we could benefit a little more from tumor markers. Again, these are things you want to ask your own clinician about. You probably won't find the first few clinicians that you talk to are willing to run Signatera because they just don't want to produce that anxiety for their clients. But I did find one, and I think there are two in Portland that have been running Signatera for their clients very willingly. So it's just kind of a personality requirement. I think they have to put themselves in our shoes and if they would want that anxiety—because they're that inquisitive. It tends to be the scientists, the researchers that are that inquisitive, and so that would be the first place that I would go if you're interested in Signatera. And for different insurance companies, you may not have it covered because it is a pretty new test. But tumor markers are cheap and they're usually covered.

I'm going to leave a list of other tests below because there are so many now and I have a really good talk from the Lobular Breast Cancer Alliance that there are two different researchers that are talking about some of the tests that they use. Again, it's mostly for later stage cancers, very, very useful for stage four.

And that's how I want to end this podcast discussion, talking about just how similar Marquita and I are in the end, even though I had Lobular, she had Ductal, I had triple positive—I had HER2 low, so it's kind of triple positive—and she had triple negative. So you'd think on first glance that she and I were the opposites, we’re so different.

But what really makes the difference is how large your tumor is and how fast growing it is and whether or not it was eradicated in surgery. And that's really the main thing that makes us similar. And that's what puts us on this, such a similar path. Yes, we had different types of breast cancer with different markers but until you reach stage four, triple negative is not as scary as you might think, because usually we get it with the chemo and certainly with the surgery, if not with the chemo, and usually women live nice long lives after that, especially when they've had the adjuvant chemotherapy that works really well.

And so after your first, your stage one occurrence, if you don't have a recurrence in the first five years, then you can really kind of rest easy, and it's just when you hit those later stages and you really need the drugs to treat this type of cancer that it becomes like less of a menu to choose from in terms of the drugs. There are still a menu of drugs. There's still chemos. There's that Keytruda. There's the PARP inhibitors for BRCA, but it's less.

And so a triple negative patient is only different from a triple positive patient in those later stages of cancer. And that's another thing you just don't hear or see. We really have so much more in common across the board than we often acknowledge in our conversations and in our culture. And so I just, I kind of wanted to shine some light on that and the fact that both Marquita and I were very safe not doing chemo.

She didn't have the option to do any Aromatase (inhibitors) or Tamoxifen because her cancer wouldn't have responded to that, but I didn't get offered those either because my cancer was so tame because it was so small and early stage. But at a later stage, if both Marquita and I were to recur, we would look very different in terms of the drugs that we would take or be offered. And that's what makes triple negative more essentially different or foreign from the 85% of us that have somewhat positivity in those three markers. We'll have many, many more markers. It's not just always going to be three markers. Things are adapting and changing and always developing in cancer research.

And so these three markers are not the only ones that are going to land on the scene. Already, there are many more that are kind of minor factors. So TNBC is not the extent of what makes us different either or the same. The more advanced our tumors become, the longer they live, the more mutated they become and more different we are—in the makeup of our tumors, too—so it is a lot of gray area and not very much black and white. But that's okay because that makes us more relatable to each other and supportable to each other. And that's what I love. I love to learn how we can relate. There aren't that many walls up between us after all.

So next week I'm going to be interviewing April Stearns from Wildfire Magazine, a huge, huge, inspiration to me and the thing that really got me through the roughest time after breast cancer diagnosis and surgery when I was pretty isolated. So can't wait to talk to April about her story, and I will talk to you then.