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ACOG's CME-eligible podcast episodes, designed for ob-gyns and primary and ob-gyn care professionals, explore early onset breast cancer, hereditary cancer, and gynecologic cancers. Tune in to hear expert-led discussions about diagnosis, treatment conversations, genetics, and patient-centered care.
If you are a health care practitioner, you can apply for free CME credits after listening to these informative podcast episodes.
For more information, visit https://www.acog.org/womenscancerpod.
Dr. Mark Pearlman: [00:00:00] Welcome everyone to today's podcast, brought to you by the American College of Obstetricians and Gynecologists. My name is Mark Perlman, and I'm the founder and past director of the Center for Cancer Genetics and Breast Health at the University of Michigan, where I'm currently active Professor Emeritus.
We're diving into a crucial topic today, early onset breast cancer. As someone who's focused on the intersection of O-B-G-Y-N and Breast Health for many years. I am particularly passionate about bringing this discussion to our listeners today, and I am beyond thrilled to be joined today by two individuals who bring incredibly valuable perspectives to this conversation.
Dr. Erin Cobain is a breast medical oncologist and an associate professor in the division of hematology oncology at the University of Michigan. She specializes [00:01:00] in the care of patients with breast cancer and inherited cancer risk. She also serves as co-director of the breast cancer Clinical Research team at the Ville Cancer Center.
Dr. Cobain specializes in the care of patients with all types of breast cancer, but also those individuals who are at high risk of developing breast cancer, including early onset breast cancer. Thank you for being here, Dr. Cobain. I. Could you share a bit about your work and what makes the landscape of early onset breast cancer particularly important to you?
Dr. Erin Cobain: Absolutely. Thank you so much, Dr. Perlman. I'm thrilled to be joining today. As Dr. Perlman mentioned, I specialize in breast cancer, but I really have a particular interest from a research perspective in what we call tumor biomarker. So understanding how specific molecular features of a tumor may help us understand which therapies [00:02:00] are most appropriate for our patients with breast cancer.
Um, so another way to think about that is that I'm very interested in how we can personalize breast cancer therapy, um, and find the right treatment for the right patient in general. Um, I also have an interest in, in early onset breast cancer, and I would say that's also informed by the fact that I practice in the breast and ovarian cancer genetics clinic.
And so I see many patients with either strong family history or hereditary cancer predisposition, um, and treat many of those individuals if they do develop breast cancer at early ages In my general breast cancer clinic. I think there's lots of opportunity potentially for the use of targeted therapies in individuals who have hereditary breast cancer predisposition.
Um, so that dovetails with my research interest very well. And then also I think the other aspect of this is that younger onset breast cancers, um, you know, oftentimes are more [00:03:00] aggressive tumors. Um, these are tumors that are faster growing, more proliferative, perhaps have greater potential of spread outside of the breast.
And so with this, um, we are interested in really how we can optimize therapy, um, in order to ensure that these patients have the best possible outcomes and high likelihood of cure. Um, and that's a little bit about me.
Dr. Mark Pearlman: Great, thank you. Also with us is Allison Merman, who is an early onset breast cancer survivor.
Allison was diagnosed with breast cancer in 2021 at the age of 36. She also is truly one of my favorite people in the world, and with full disclosure, Allison also is my daughter. Alison, thank you for sharing your personal journey with us. Perhaps you could start by telling our listeners a little bit about your experience.
Allison Mertzman: Yes, so I'm Allison. I am a mom of two really great kids and a partner to an amazing [00:04:00] wife. Um, and I was diagnosed at 36 years old with stage two A, her two positive breast cancer. Um, it was a shock and a surprise because I, like so many people, thought I was too young to be diagnosed with cancer. But alas, here I am and, um.
I now share my journey and my follow-up care and the ongoing stress of being a survivor of cancer this young online. So I'm also a content creator who shares their journey with the world.
Dr. Mark Pearlman: Thank you Allison. So Dr. Cobain, let's start with the basics. What is the definition of early onset breast cancer in the medical community?
Is there a specific age cutoff? And are there any nuances to that definition?
Dr. Erin Cobain: Yeah, great question. [00:05:00] Um, and I think I'll start by saying, yes, there are some nuances to this definition, but we technically define early onset breast cancer, generally as breast cancer that develops in women that are age 50 or younger.
This age cutoff actually informs, um, sort of some of the criteria for who we consider should definitively undergo genetic testing for the possibility that they may have inherited cancer susceptibility. So, for instance, our National Comprehensive Cancer Network guidelines now state that regardless of an individual's family history, if you were diagnosed with a breast cancer at age 50 or younger, um, you qualify to at least have a discussion about whether or not you may wish to pursue genetic testing to see if there was some factor that the patient may have been born with that increased their risk to develop breast cancer at a younger age.
Um, I think though the reason that part, partly the reason that this is a nuanced discussion is that we also oftentimes, especially with [00:06:00] regards to the most common breast cancer subtype, which is hormone receptor positive, HER two negative breast cancer, make a distinction between breast cancers that are diagnosed in a premenopausal woman versus postmenopausal women.
And there appear to be differences in sort of treatment effectiveness and even outcomes when tumors develop in premenopausal women versus postmenopausal women. Um, and you know, we all know that, um, menopause does not happen in every woman at the age of 50, even though that's around the age of menopause.
You know, the average age that many women would have gone through menopause by that age, but. We still see many patients in our clinic that are diagnosed with a premenopausal breast cancer at the age of 54 or 55. And so the age isn't always, um, gonna dictate whether or not we sort of approach this, um, the way we would typically a younger onset breast cancer.
Dr. Mark Pearlman: Yeah, and I know too [00:07:00] that, um, 50 is, is a number that many institutions use to define early onset breast cancer, but the CDC and acog, who I know has been working with the CDC also, um, has a little bit different definition of 45 and younger. Um, so it really depends a little bit on who you're talking to.
The issue of menopausal versus premenopausal breast cancer is particularly interesting, and in the individual person, 50 or 45 may not define them as menopausal or premenopausal, obviously exactly their, their, um, ovarian status at the time of their diagnosis is important. Allison, when you received your diagnosis, did the term early onset resonate with you, and what were some of your initial thoughts or feelings about that?
Allison Mertzman: You know, it's interesting. I feel like I've learned a lot more as I've been diagnosed and I'm in the world. I don't know that I [00:08:00] even. I don't know that breast cancer was even on my radar because at the time I had no family history. Um, I since now have family history as my mom was diagnosed, uh, six months after me.
I, I didn't even think about it because it was never even on my radar and even my symptoms didn't really match what your typical breast cancer findings would be. And also as, as I finished my treatment and moved into survivorhood after my diagnosis and subsequent treatment and moved into my di, my survivorship, um, I, uh, definitely have.
A significant amount of fear as I move into my life As a young person, I'm turning 40 in just about three weeks and a mile. That's a huge milestone for me because when I was diagnosed at 36, I didn't know if I would make it to 40, and now I'm, you [00:09:00] know, on the precipice of my 40th birthday, and I'm looking at things like my 45th birthday and my 50th birthday, and I, I didn't know if those goals were even attainable as an early onset breast cancer, both diagnosis and then survivor.
Dr. Mark Pearlman: So, um, staying on this topic of early onset, Dr. Cobain, um, are the incidence rates increasing faster for early onset breast cancer than the whole population of people with breast cancers? And, um, what might be some of the factors, uh, that are contributing to this trend, if that's true?
Dr. Erin Cobain: Yeah, so this has been a.
Hot topic of conversation because, um, yes, the incidence of breast cancer in younger women is rising, uh, disproportionately. Um, meaning that there is an increase in incidences in that population, but not [00:10:00] necessarily in older patients. You know, that's sort of staying relatively stable. Um, and so that's really begged the question of why, right?
Is breast cancer incidents rising among younger women? I don't think that we precisely know the answer to this question, but there are several theories that have been postulated, and I'll just put some of those out there. One of the theories that's been put out there is the potential that delayed childbearing could actually contribute to rising rates of breast cancer in younger women.
Um, the average age at which women are having their first child in the United States is typically later in life than it was. 10 15 or certainly 20 years ago. Um, and so they're certainly thought, you know, women having children in general later in life, um, is contributory, um, toward rises in incidents of breast cancer.
There's also been a trend, um, with [00:11:00] women actually getting their periods at younger ages, um, which is also theoretically, um, something that could contribute to increased rates of breast cancer in younger women. That's because there is just likely longer lifetime estrogen exposure because of, of, you know, the people having their periods start at younger ages than maybe they were several years ago.
So that's another potential contributor. Increasing rates of obesity, um, has also been postulated as a potential contributor. Environmental exposures sort of not yet well understood. Right. Um, uh, and whether or not it has something to do with exposures, be it environment, food related, right. That could also be contributors.
Um, I think another thing worth mentioning, although I don't know that we have strong evidence that this specifically ties to younger onset breast cancers, is just, there's been a lot of conversation recently about the link between alcohol, [00:12:00] um, and development of cancer. Um, because there have now been several studies demonstrating that people who consume alcohol may have higher risk compared to those who do not.
Um, and particularly people who are sort of over that threshold of consuming more than two to three alcoholic beverages per week. So there's also been at least some theory, um, albeit I think not definitive data, that it particularly applies to young onset cancers that, um, perhaps with. Increasing alcohol consumption.
That is another contributor. I think the great likelihood is that this is multifactorial. Um, it's certainly an area, um, that needs further study, but we are indeed seeing rises in incidents in young women.
Dr. Mark Pearlman: So I'd, I'd be interested in your thoughts on this. As you were talking about earlier, menarchy, early, earlier first periods, and later onset of, um, first birth or choosing not to have children, which, um, we all know we've known for a long time are risk [00:13:00] factors for breast cancers.
Do you think there are more incremental breast cancers or there're just happening earlier because of the changes in earlier monarchy or, or not having children or, or, uh, having children in an older age?
Dr. Erin Cobain: It is possible that these might just be happening earlier because of having children at older ages.
Um, and I say that largely because when you look at actually breast cancer risk and its association with pregnancy within five to 10 years after how a pregnancy, there's actually a transient. Increase in risk of breast cancer compared to an age adjusted group of women who have not had a pregnancy in that timeframe.
Now, in the long run, pregnancy is generally protective. So while there's that transient increase in risk to develop breast cancer in that five to 10 year period following a pregnancy, if you sort of get [00:14:00] beyond that period, actually having a child is generally protective. Women who have had children actually have lower rates of breast cancer in the long run, sort of after that initial 10 years, you know, following, having a child.
But there has, you know, been a lot of discussion about the possibility that in that initial five to 10 years following a pregnancy, if your initial pregnancy is. Happening over the age of 35, for instance. Right. Um, that sort of transient blip in risk might be a little bit more substantial, obviously for women who are older when they have their first pregnancy, compared to a woman who's 25 when she has that pregnancy.
Um, and you know, the, that small blip in risk is not really clinically meaningful between the ages of 25 and 35, but might very much be clinically meaningful between the ages of 35 and 45, for example.
Dr. Mark Pearlman: Yeah. So what is clear is [00:15:00] that there is an increase in early onset breast cancer. Um, what's not clear is.
What's causing that though? We have a lot of theories behind that and what's also not clear is whether these are cancers that are occurring earlier in patients who might have developed cancer at a later age anyway.
Dr. Erin Cobain: Correct.
Dr. Mark Pearlman: Um, so lots of, lots of work for you to do, Erin, and figuring this off out. Um, Allison, you've connected with so many people online who have followed your breast cancer journey for the past four years.
Within that network of individual, is there awareness of this increasing incidence of early onset breast cancer in your conversations with other young survivors?
Allison Mertzman: Yes. I would say that we have talked about it quietly amongst ourselves because obviously you start to wonder why. I've had several friends who've been diagnosed with breast cancer.
One did have a genetic predisposition. Her mom actually [00:16:00] died from breast cancer and she was going in for her regular. Her prophylactic, um, mastectomy and uh, they ended up finding cancer. So, um, she ended up doing chemo and all of that, but she, I think, anticipated the potential because she had one of the BRCA genes on the other hand, the other person I knew who was diagnosed about a year before me, um, I just remember she was diagnosed in 2020.
It was March of 2020. And I just felt so bad for her. I was like, oh my gosh, with a pandemic happening, this is so awful for you. And then little did I know a year later, she was gonna be one of my biggest supporters talking me off the ledge as I was going through my own journey. Um, but that's just in my inner circle.
And those are women who are my age. So they're exactly my age. They were both, one was 35 at diagnosed, one was 37 when she was diagnosed. So that was all within, and those are friends of mine. Um, that doesn't exclude the. [00:17:00] Thousands upon thousands of women I've talked to who are under 40 that have been diagnosed.
I know a woman who was just diagnosed at 27. So it is, we're, we're not just talking thirties, we're talking twenties as well. I know several people who've been diagnosed in their twenties. I don't recall ever seeing this kind of diagnosis in my mom's friend groups. My mom had one very close friend who did get diagnosed with breast cancer and a few other women, but I know that one in eight women are going to be diagnosed with breast cancer.
So I do know the facts at least on that. But I don't recall them ever being diagnosed this young except for one of my mom's friends. But between me, I know I have several friends.
Dr. Mark Pearlman: Yeah. And, and Allison, your answer really says to me that there's a great opportunity, um, to have a broader conversation about this outside of the medical community.
And, [00:18:00] you know, hey, it's one of the reasons you're here, Allison, is, um, you have such a large, um, group of people in the general population following you. Um, this issue of increasing incidents of early onset breast cancer, we really need to have lots of advocates in the community and people who understand that we need to be sure that people are getting their screening mammograms.
For example, starting at age 40. It used to be, you know, half of the country was getting it at 50 and 40. We've all gotten on the same page in, in our medical guidelines, starting at age 40. But there needs to be a little bit of an uprising, um, in the non-medical community to. Address this issue because it's obviously a very critical one.
Well, I wanna turn topic of genetics and other risk factors for early onset breast cancer. Um, this is an area of particular interest for me as I was part of the research team at the University of Michigan that was looking for the RCA one and [00:19:00] provided clinical care to the earliest identified, uh, identified BRCA carriers dating back to the early 1990s.
Um, Dr. Cobain, can you elaborate on how genetics plays a role in this younger population compared to older individuals with breast cancer?
Dr. Erin Cobain: Absolutely. You know, we know that if people have a genetic susceptibility, um, to developing breast cancer, there is a greater likelihood that they would develop breast cancer at earlier ages.
That's not always the pattern. Of course, there are individuals that are diagnosed with breast cancer in their sixties and seventies, just like is, you know, sort of most commonly seen in the general population. But in general, having genetic susceptibility increases the likelihood that one could develop an early onset breast cancer.
Um, this is one of the reasons that when we see an individual with early onset breast cancer, um, really regardless of their family history, um, they are given the opportunity [00:20:00] to pursue genetic testing to determine if they sort of may be in this, in this category of genetic susceptibility. And I would also say that our, um, you know, sort of understanding of the contribution of genetics, um, has really broadened over the last five to 10 years in the sense that we have identified many genes, um, that contribute to breast cancer risk well beyond BRCA one and B RCA A two, which are of course the most well-known breast cancer susceptibility genes and, um, are clearly the most well described and well researched.
But now we're increasingly identifying women that have more what we consider to be moderate penetrance breast cancer susceptibility genes. Um, so, you know, just sort of put this into context, having a b rca, A one or a b RCA two gene mutation is generally conferring, you know, a 60% or greater lifetime risk to develop breast cancer, which is obviously very substantial, but some of these [00:21:00] more moderate penetrance genes.
They might confer a 20 to 25% lifetime risk to develop breast cancer. And I think that this is one of the reasons why, um, families perhaps with these, you know, genetic alterations weren't necessarily coming to light. Because when only I. There's, there's a 20 to 25% lifetime risk of developing breast cancer.
You could imagine looking at a family tree and seeing one breast cancer and that not seeming terribly out of the ordinary, given how common breast cancer is in the general population. And that one in eight women will develop breast cancer over their lifetime. And so I think we're really widening the net on sort of who qualifies to undergo testing for inherited breast cancer susceptibility.
In fact, um, you know, the American Society of Breast Surgeons has actually gone so far as to say that all women who have a history of breast cancer should be, you know, given the opportunity to pursue genetic testing. And so I think we anticipate in the years to come, [00:22:00] um, this net is just gonna cast wider and wider and wider, um, because I think there's probably more genetic susceptibility contributing than what we appreciated five to 10 years ago.
Dr. Mark Pearlman: So generally speaking, um, about five to 10% of all breast cancers are related to a specific gene mutation, like b, rca A one or BRCA two, and, um, the other 10 or so contributing, uh, genes as well. But what are some of the important reasons why genetic testing should be done? Obviously, they've already been diagnosed with their breast cancer, but from a treatment perspective, from a cascade, um, you know, testing on affected family members perspective, um, and avoiding other cancers, right, that are associated with gene mutation, can you.
Uh, go into that just a little bit more.
Dr. Erin Cobain: Yeah, absolutely. I think that oftentimes, um, when we diagnose inherited susceptibility in the [00:23:00] context of a breast cancer diagnosis, um, sort of one of the very first discussions that we have with patients is how that might impact their surgical decision. So, for instance, women that know that they may be at increased for yet another sort of separate primary breast cancer later in life, um, may be more inclined actually to choose mastectomy, um, bilateral mastectomy as their surgical treatment.
Um, if their strongly desirous of wanting to avoid perhaps a second primary breast cancer later in life, that they may be higher than average risk to develop compared to. Women in the general population. I think the other aspect of this is with regards to the systemic treatment of their breast cancer.
So, um, there's now been a very well done clinical trial in, um, individuals that have high risk, uh, breast cancer that is associated with germline B, RCA one, and b RCA two mutations utilizing, uh, the PARP inhibitor olaparib. [00:24:00] And these individuals that were high risk for recurrence, um, had the opportunity to take olaparib for a year following their breast cancer diagnosis.
Um, and that study has demonstrated that women who were able to take olaparib had a significantly lower risk of breast cancer recurrence. And really the only way you qualify to receive the Olaparib is of course to have the genetic testing and know that there's a b RCA one or a b RCA two gene mutation that is present.
So in all of our patients. Um, for whom we may make a change in their systemic therapy on the basis of this information can be really critical to know because it literally can make a difference in what is the risk of their cancer returning at some point in the future. Um, and then whenever we talk to patients about the benefits with regards to knowing this information in terms of how it might impact cancer screening of, you know, for other cancer types or even prophylactic measures, right, that they could, uh, consider.[00:25:00]
You know, I think we're all generally familiar with B, RCA A one and B rca, A two gene mutations also predisposing to risk of ovarian cancer. Um, and you know, given that we have really no good screening tests for ovarian cancer, um, these individuals have the opportunity to actually undergo. Prophylactic BSO and, and have their ovaries and fallopian tubes surgically removed.
We also see risks for other types of cancers beyond breast and gynecologic cancer. So some of these gene mutations, like for instance, check two gene mutations are associated with increased risk for thyroid cancer. We actually do thyroid ultrasounds routinely every two to three years in individuals with check two gene mutations.
Whereas in the general population, you would never be screened for thyroid cancer. Some of these gene mutations are associated with increased risk for colorectal cancers, and so getting more frequent colonoscopies, um, is something that may be offered that wouldn't otherwise be offered to people in the general population.[00:26:00]
So, um, we really try and help patients understand that this knowledge is actually a tremendous amount of power. Um, it's a tremendous amount of power to intervene to either. Decrease future cancer risk or at least screen patients more effectively so that if a cancer were to develop, we're much more likely to catch it at its earliest stages when the potential for cure is greatest.
Dr. Mark Pearlman: Yeah. And that, thank you, Erin. Um, I would also add as an ob, GYN, you know, beyond. One and BRC two. It's pretty clear now that if someone's gonna get genetic testing, they're gonna get panel testing and things like Paul B two increases the risk of ovarian cancer. And we're offering risk reduction zingo ectomy, um, to those populations as well.
And with regard to cascade testing rate about testing unaffected family members, uh, there's a male risk associated with these [00:27:00] cancers. In BRC two, for example, a substantially high risk of not only more prostate cancer, but aggressive prostate cancers. Um, there's a several of hundred fold risk of male breast cancer and BRC two carriers, um, pancreatic cancer and BRC two carriers.
So there's, there's so much important information, not only for the individual who was just diagnosed with early onset breast cancer, um, but. For their family as well. And I'll, I'll say one other thing before, because Allison, I wanna ask you a question about this as well, but preventing BRC passing the gene on, um, to an offspring through prenatal genetic testing, uh, through IVF, where, um, for those who aren't familiar with it, you can take a.
Um, through IVF, um, an early stage remove a single, um, cell from, uh, an early [00:28:00] developing fetus, identify whether it carries the gene mutation, right? One in two of those embryos will carry the gene mutation. One or two will not, and only implanting those embryos, uh, that do not carry the gene. So you can even prevent it from, um, passing it on to, um, uh, a future child.
Um, so there are many, many, many reasons obviously for, um, doing genetic testing. Uh, and I think importantly, as you point out, it even affects treatment for the individual as well. Um, with the PARP inhibitors. Allison, did genetic testing play a role in understanding your diagnosis? Um, and, uh, do you have any thoughts on genetic testing for younger individuals with a family history?
Allison Mertzman: Oh, I opted in immediately. I didn't even second guess it because if there was an opportunity to give my. The child. One child. I have two kids. One is genetically mine. I carried both of them. Um, but to give more information to that child was only [00:29:00] gonna benefit her in the future because this is obviously something that's going to affect her life.
And now that she has both a mom and a grandmother who have been diagnosed with breast cancer, she is at high risk. And that's just the way that it works. And so if I could give her more information, I did. I had no genetic markers. I don't think our genetic marker has been found. That's what I think. If I was gonna go with my gut instinct, I don't think my mom and I were both diagnosed with cancer and there's no tie there genetically.
I just don't, so,
Dr. Mark Pearlman: so beyond genetics, there are other unique challenges faced by younger women with breast cancer. Allison, you've navigated this firsthand, obviously. What are some of the unique challenges that, uh, younger women face when diagnosed with breast cancer that, um, may differ from the experiences of older people?
Allison Mertzman: Well, I think [00:30:00] fertility is probably the biggest one. I had two children already when I was diagnosed. I had my kids at 30 and 33. Um, so I was technically not a geriatric pregnancy. Um, but I did do IVF and I know that there is an increased risk with doing IVF though the risk, the, the risk I believe is pretty nominal.
It's not huge, but there's still obviously a risk. But I, I know a lot of my friends who have gone through this who did not have children, had to scramble to see if they could get IV IVF done before they started their treatment. And once you go through chemo, you also. Most people my age will go into something called medical menopause where they shut down, kind of quiet down your ovaries.
Um, so you won't have a period while you're going through this and try and wake 'em back up in hopes to save some of your fertility. There's unique challenges that come along with going through menopause [00:31:00] earlier than you're supposed to. And so they do try really hard to avoid that. And as a person who is still in their thirties for a few more weeks, um, I don't, I'm not quite ready to be in menopause just yet.
And also, I wanted to think about my future, and this was something that. My oncologist at the time discussed with me. I was like, I don't want any more kids. And she goes, I know you say that now, but there is the, you did want to, and there's always the opportunity that you may want more. And I wanna give you the best chance for whatever it is you might want in your future so that your quality of life is also good.
And that's something that was discussed heavily with me, which was my quality of life. Because when you look at somebody who's 36, what you're hoping is they live another 36 years. And what is your quality of life going to look like? Well, you have to look at a multitude of things when [00:32:00] we discuss quality of life, right?
And that was a huge discussion that was had. And how much can one person handle for how long? And you know the answer is different for everybody. But it's, it's a good question. And everybody's answer ranges. I've heard wide ranges of, of what is, what do I need my quality of life to look like? How can, how can I continue doing this while also still getting, because I did not get a mastectomy because at the time there was no family history.
And with my diagnosis, my, um, my recurrence of breast cancer was the same if I, or similar if I chose a lumpectomy with radiation versus a mastectomy. But I go through currently every six months getting some sort of screening. I did just graduate to one year mammograms. But in between that I get, um, MRIs at every six months [00:33:00] as well.
So every six months I'm having some sort of screening. And for how long? It just depends. I have to get clean scans every time I go. And I'm gonna get that one day. I just know it. But you know, it's, it's, what are you, what are these? You know, I discuss this with my wife constantly and I discuss this with my audience constantly.
What, what does your life look like six months at a time? How do you want your life to look? Six months at a time? And these are questions that I and so many survivors are asking ourselves. And treatment plans are very indicative of what your little six months, one year, what those little slices of life look like until the end.
And it doesn't matter the diagnosis. I will say that I have people who are, I have friends who are diagnosed stage four right now, and they still, no matter what, every oncologist is looking at what is the [00:34:00] best quality of life I can give this person, they're not looking, everybody's gonna die. We know that some are gonna die faster than others, but they're still looking at giving you the best quality of life.
And that's why that answer varies wildly.
Dr. Mark Pearlman: Yeah. So you, you mentioned that you chose to have lumpectomy instead of mastectomy. So body image must have been something that you were, um, it was entered into that decision making. Can you talk amongst younger women on the issue of body image and, and how it was important to you and, and as you were making decisions?
Allison Mertzman: A lot of that was, um, the aftercare and what that was going to look like. I have friends who've gotten mastectomy. It is. Far more than just chopping your boobs off because many people will then go in for reconstruction and they can do deep flap surgery, which is a pretty intensive surgery that I think people think, oh yeah, you can just, you know, take [00:35:00] some of my stomach and remove the fat and reattach the nerves.
Like that is a very extensive surgery. Some opt for implants also, still, you have to have expanders in for several months while you finish up treatment because many time you'll do mastectomy and still have to do other things, and you can't get your implants in right away. So. There is, there is a lot of factors that go into that decision.
I found this to be the least invasive, but regardless, you end up with some pretty nasty scars. I ended up with some pretty, pretty extensive scarring and my friends have all ended up with some pretty extensive scarring. Some is, some can protect your nipples, some can't. It also depends on where your cancer is.
There are so many factors that go into the decision of whether or not, um, you're getting a mastectomy and so often people will just be very flippant. I don't understand why you didn't get a mastectomy. And you're like, I, [00:36:00] I don't think you understand the extent in which that surgery takes a toll on both your body image, your mental health, the amount of other additional surgeries you may have to get.
And it's, it's not an easy, easy decision for anybody. It's deeply personal for a lot of people. And I mean, it's deeply personal for everybody. I don't know that anybody lands on something. Um, obviously the end goal is survival. So most, almost every woman I know will take whatever it is that they need to do to give them the greatest chance of survival.
Um, but I was given two options and I took the less invasive one that was not going to have such a long, um, recovery period. I also had two little kids. My kids were three and five at the time, and so knowing that I wanted to bounce back quicker to take care of them was also really important. But yeah, when it comes to body image, I [00:37:00] think that, you know, breasts are such a huge part of being a woman in general, and to act like, it's like I, I remember at some point I was sitting probably four or five chemos in, and I did end up doing something called cold capping to save my hair.
But I said the most, the har one of the hardest things that I see women go through is they take your breasts, they take your hair, which are like such parts of huge part identifiers of so many women. I know that it is, it is such a hard journey to walk and, and because it's so common, I think that people are like, oh yeah, no big deal.
You just lose your hair. People said the same thing about my hair and I said, no big deal. It's not only a part of me, but it also is really painful. It is not, it hurts to lose your hair. And I [00:38:00] think that that is not talked about because people are like, oh, just shave your head. I'm like, every single follicle on your head is gonna hurt.
It's killing every single cell on your head. So to go back, yeah, there's a huge amount of body image that goes into that.
Dr. Mark Pearlman: Yeah. Thanks. And I, I wanted to reemphasize what you said, um, that was really important, that regardless of what. Um, patients choose mastectomy versus lumpectomy radiation. In almost all circumstances, it does not affect recurrence risk, nor does it affect, uh, mortality, which is really important.
Um, so, um, the choice is good, but the choice is sometimes hard. Um, to, to kind of summarize what you said, uh, Dr. Cobain from a medical oncology standpoint, how do these unique challenges that all Allison just shared with us, such as fertility preservation or body image concerns factor into treatment planning for younger patients?[00:39:00]
Dr. Erin Cobain: Yeah. Is the routine
Dr. Mark Pearlman: part of what you do.
Dr. Erin Cobain: Absolutely. Um, I think that talking with women who come to our clinic with young onset breast cancer about what their goals are for family planning is one of the very, very first discussions that we have. Um, and, um, one of the things that I really, really try and emphasize to my patients, because the logical fear in everybody's mind when they're sitting there is, if I delay my treatment by two to three weeks to undergo IVF and egg harvesting, am I going to compromise my breast cancer outcome?
Am I going to increase my risk of breast cancer recurrence? And there are several, um, studies that have indicated that women who delay initial treatment by. Two to three weeks in order to undergo egg harvesting, do not have any [00:40:00] compromise in their breast cancer treatment or outcomes ultimately. And so, um, for people who are desirous of potentially having a pregnancy in the future, or potentially adding to their family in the future, I really, really strongly encourage them, um, you know, to, to take the time to take care of that and, and to pursue that.
Um, and not necessarily, you know, just jump right into therapy and then, you know, risk basically forever, potentially losing that opportunity. Um, so that's a conversation, um, we have with, with every patient as one of the very first most important discussions. Um, that's, that's a, that's, that's a part of, uh, basically coming to our clinic.
One of the other things I will say, um, that I think is really important just in relation to sort of, you know, these questions around body image and the decision about whether or not to pursue bilateral mastectomies. I, I, I just sort of wanna put another lens on that, which is that everything, you know, we've said [00:41:00] here is true, but the, the, the, the way that I sort of really explain this to patients is that so many people come to clinic with the assumption that if they have a bilateral mastectomy, that they will have a better outcome or that they will further reduce their risk of breast cancer recurrence and all of the studies that have compared.
What we call breast conserving surgery, lumpectomy and radiation versus having a mastectomy demonstrate that the risk of breast cancer recurrence is identical between those surgeries. Really? What? So then you might say, well, what does bilateral mastectomy accomplish? Right? Why would anybody do that? Um, and really what it accomplishes is it reduces the risk of having a brand new.
Primary breast cancer in the future, right? So for people that come to clinic and have genetic susceptibility, like a B rca, A one gene mutation, and let's say they get diagnosed with their very first breast cancer when they're 35 years old, [00:42:00] if that patient undergoes a lumpectomy and radiation, they have a substantially higher risk than the average woman in the general population of having another brand new breast cancer at some point in their lifetime, which may require, you know, chemotherapy, another surgery, you know, potentially endocrine therapy, potentially another parp, you know, PARP inhibitor.
And so I think some people, when faced with that, make the decision that, you know, I would wanna try and do everything I could to avoid needing to go through treatment again. I also have this conversation with a lot of women who have severe anxiety around screening, um, and around the potential need to get breast MRI as surveillance for the foreseeable future.
I think for some women that is a huge point of anxiety. Um, and when Allison talks about quality of life, I think for some women they say yes, the recovery from a bilateral mastectomy, I know it's gonna [00:43:00] be a long time, it's gonna be a six to eight week major surgery, but for me, the idea of having to go in every six months for some kind of breast screening might be worse than sort of that, you know, short term, very intensive recovery and major, major surgery.
Um, we never wanna place a value judgment on that for anybody, right? Our job is to make sure that people are informed of all of these choices, what all of the potential. Risks and benefits are of all of these potential avenues. And then exactly as Allison said, um, I think that there, you know, people decide different things because they have different personal preferences.
Dr. Mark Pearlman: Yeah. And before we go on to the next topic, I, I just. Want to state again and make sure that the audience heard that not only is the risk of breast cancer recurrence, no difference with mastectomy versus local therapy with radiation, um, the risk of mortality is no different between the two. [00:44:00] And why many patients, for example, BRC one carriers who've been diagnosed with breast cancer have still a 40 to 50% risk of developing a second breast cancer.
And that's not true in the general population, right? The likelihood of having a second breast cancer in somebody who has, if you will, a sporadic breast cancer, um, is certainly in the single digits. Um, and so, uh, very important why, um, there's a different conversation with BRCA carriers, for example, around prophylactic mastectomy and the benefits of that, uh, that doesn't necessarily translate entirely into, uh, the general population.
So as we're talking about kind of the intersection of breast cancer treatment and. Reproductive health, um, Dr. Cobain for breast cancer survivors who want to have children, what's the usual advice on how long they should wait after their diagnosis, before trying to get pregnant? And why is that waiting period important from a medical standpoint?[00:45:00]
Dr. Erin Cobain: Yeah, so it actually hasn't been until recently that we've had some clinical trial data to, um, maybe inform this a little bit. I think that we used to tell patients we really had no data, and so there really isn't a great answer to this question. But I think in general, the advice that we gave prior to the clinical trial I'm gonna discuss in a moment, is that we wanted patients to at least have completed, you know, ideally all of their, all of their therapy, right?
All of the treatment for the breast cancer that they had been diagnosed with. Now, the durations of that therapy are highly variable, depending upon the breast cancer subtype that one has. So, for instance, with HER two positive breast cancer, we're generally talking about therapy that lasts a duration of at least one year.
Right? Um, that's largely because with a her two positive breast cancer, we're giving her two directed therapies that are administered for a total duration of one year. And we [00:46:00] also do not advise women to get pregnant or attempt becoming pregnant while they're on her two directed therapy because it can be harmful to a developing fetus.
Um, so, um, you know, similarly with triple negative breast cancer, you know, the systemic therapy for triple negative breast cancer generally is lasting, um, about a year or maybe be a little bit yet longer than a year. But in contrast for individuals that have a hormone receptor positive breast cancer, um, the systemic therapy that we're administering is, you know, with endocrine therapy at least five years after an original diagnosis.
Um, and now with more modern data, we have now have many, many women actually staying on endocrine therapy for 10 years. And so I think that, um. You know, the questions around safety of, of pregnancy, particularly in women with hormone receptor positive, HER two negative breast cancer, which is the most common [00:47:00] breast cancer subtype, um, really were particularly challenging in part because they're on anti-estrogen therapy for a long period of time.
And also in part because of this concern about the theoretical, um, you know, sur with the surge in estrogen levels during a pregnancy, we all had concerns, right? Theoretically, that it could be like adding fuel to a fire, right? If there were residual cancer cells that remained in the body with high levels of estrogen during pregnancy, is it possible that that's going to increase risk of breast cancer recurrence?
In the recent years, there's now been a clinical trial done specifically for women, um, you know, that, that, that have hormone receptor positive, HER two negative breast cancer. Um, looking at women who were able to be on anti-estrogen therapy for at least 18 months prior to considering, um, having a pregnancy.
At which point in [00:48:00] the context of this clinical trial, um, women interrupted. Their endocrine therapy in an effort to conceive. And then the understanding was is that following the pregnancy, there would be a resumption of endocrine therapy. Um, this is the positive clinical trial, a great name for a clinical trial about pregnancy.
Um, and in that study over a duration of a. Little over three years of follow up. It showed that women who had a pregnancy after a breast cancer diagnosis, um, and interrupted their anti-estrogen therapy temporarily, did not appear to have any increased risk of breast cancer recurrence or other breast cancer events compared to a control population that did not have a pregnancy during that time and stayed on their endocrine therapy throughout that, throughout that time.
So I, I think this was really, really promising, um, data and a, and a, and a real, [00:49:00] um, sense of encouragement about this potentially being safe. I think the one. Caution I would give is just that, um, this is shorter term follow up and we know in particular with estrogen driven breast cancers, that risk of recurrence, you know, extends well beyond that three and a half year mark, right?
That sort of was the, you know, average amount of follow up in the clinical trial. Women can have recurrences with that breast cancer subtype, even five, 10, even 15 years after an original diagnosis. And so I think that we are all watching the outcomes data generated in that clinical trial, um, very closely.
And we will look forward very much to subsequent follow-up being presented so that we can understand, um, if there are any clinically meaningful differences between the group that had a pregnancy versus the group that that did not. But I do at least think, you know, it, it gives us some data, whereas before we had [00:50:00] none suggesting that this is feasible and at least in the short term.
Something that appears to be safe. So this is a discussion, um, that we have with a lot of women. I will, I will also call our attention to, there was a recent, um, small article published in JAMA Oncology, um, just actually I believe a few weeks ago. Suggesting that one of the concerns about this is that in a real world data set, um, many women who may interrupt endocrine therapy to have a pregnancy, that they may actually be much less likely to then resume their endocrine therapy outside of the context of a clinical trial.
Right? In a clinical trial where everything is sort of highly monitored and highly orchestrated, the majority of the women resumed their endocrine therapy. And I think that one of the fears is sort of in the real world setting. Once people stop, will they ever go back to it? And that being a potential confounder and really the safety of this approach, um, because I think, you know, that [00:51:00] period of time when.
People have just had a baby and you have a newborn and there's so much going on. You know, it's, it's difficult right? To be in the mindset of being back on endocrine therapy and, um, and dealing with the side effects that come along with it. It's, it's a, it's a, it's a tall order. So those are my, my general thoughts, but, um, these are, these are all of the complexities that, that we discuss every day in clinic.
Dr. Mark Pearlman: Yeah. And, and I thank you for that. Uh, the positive trial is, is certainly very reassuring to early onset breast cancer survivors who still want to have children. Uh, one other piece of information that's a little bit reassuring, um, and this is doesn't have anything to do with interrupting tamoxifen, but when you look at, um, early onset breast cancer survivors who have a pregnancy and compare them to.
Controlled for stage, uh, to those who didn't have a pregnancy. Um, there appears to at least be neutral effect on long-term [00:52:00] mortality. And even one study that suggested that pregnancy may be protective, um, from mortality. There's been some arguments whether that's a healthy survivor effect, whether, you know, people get pregnant are, are more likely to are healthy.
Yeah. Nonetheless, I think, I think all of this conversation here should be reassuring to individuals who are considering, uh, a future pregnancy that at least we have data, um, that suggests that the outcomes don't seem to be any worse, whether you want, whether you have a pregnancy in the future or not. Uh, so for what that's worth, Allison, your personal experience or insights on how your breast cancer treatment impacted your reproductive health or your considerations for the future.
I know you said you were done having, um, children after. The two most perfect grandchildren in the world, Ruthie and Rosie. But how does, how does this discussion, when you have conversations [00:53:00] with the audience of people you're talking to, um, is this an area of anxiety for people?
Allison Mertzman: Yeah, it's a huge area anxi of anxiety.
And you know, truthfully, when I was diagnosed, Leanne and I were in talks and discussion of having potentially a third baby. Um, and the, and was quite literally the summer that I was diagnosed was when we were talking about it. I knew that I was done caring and Leanne was considering. Um, but after diagnosis we were like, absolutely not.
And we had already gone. So we had both gone through IVF and had frozen embryos. So like, uh, for us to do it, it was not a big, I mean, it's still a thing to, you know, transfer an an embryo, but it wasn't, I didn't have to go through IVF again or do anything like that. So that risk wasn't there. It was simply what, I wanna have another baby again with a thought that I might get cancer again.[00:54:00]
And I think that that's a discussion that a lot of us have is. You know, I have two children that I have already put through this journey. Um, and it was not an easy one for either of them, and it certainly wasn't an easy one for my wife. And when discussing children and the future, you know, there's the potential that, you know, what if this cancer comes back?
What if it comes back as stage four? What if I don't have as long as I thought we did, you know. And, and what do you do then? And I still have friends though that have decided to get pregnant post breast cancer. And I think that they should, because it goes back to this quality of life. And I don't care if you were diagnosed at 1, 2, 3, 4.
If you wanna have a baby, you should be able to have a baby because we cannot predict the life. I have a, I have a friend right now who is 10 [00:55:00] years out of a stage four diagnosis. She was diagnosed at 24 years old, and she was diagnosed at stage four. At stage four, and she is now 10 years out. She's 34 years.
O th 34 years old now if she wants to have a baby. She's now lived past what anybody expected her to. We cannot predict the future, and I think that if somebody wants to have a baby, they should be able to have a baby, and that is their prerogative. And I also think the opposite. If someone does not want to have a baby, like I did not post this entire journey, knowing what I know, I, I shouldn't have to, and, and.
It really is very important. I know people who were diagnosed with breast cancer while they were 26 weeks pregnant. At this point, I have met the gamut of women who are diagnosed with breast cancer, and it is. It is an interesting, interesting watch, and I have learned to not [00:56:00] judge anyone for the decisions that they make because I absolutely have no idea what this person's personal journey is.
I just know what mine was, and it is a very difficult one to navigate. So I think that just like a mastectomy, having a baby is also a very personal decision and what that family decides, regardless of what the outcomes may be. Or what, what may happen to that child if that child may end up parentless at some point.
Many of us will also end up parentless and we just don't know what the future is going to look like for people. And I think that people should continue to make decisions as they see fit and you know, with the recommendation of the team that they trust.
Dr. Mark Pearlman: Yeah. Uh, before we move on to the next topic, I just wanna close the pregnancy.
Um, related issues [00:57:00] to talk about pregnancy after breast cancer. You know, how safe is the pregnancy after breast cancer? Are there, uh, is there a higher risk of complications? Um, what about fetal outcomes? Um, most of that is very reassuring as well. There is one complication that occurs more commonly after breast cancer compared to women who haven't had breast cancer before, and that a slightly higher risk of preterm birth, um, it's a relative risk is, is about 1.6 or so.
So it's not a tremendous increased risk, but there is an increased risk of, uh, preterm birth in women who've been diagnosed with breast cancer. And we don't fully understand the reasons for that. Um, some of it, quite frankly may be igenic, but we, we don't have, um, hydrogen meaning that. The doctors are deciding to deliver the baby a little bit earlier.
Um, but whatever the cause it's, uh, there is a low increased risk. The good news is complications of [00:58:00] pregnancy like preeclampsia or postpartum hemorrhage, um, diabetes in pregnancy are not higher in, uh, persons who've had. Breast cancer previously compared to those who haven't had breast cancer. And very, very importantly, fetal outcomes are also, uh, very similar.
There's no higher risk of congenital anomalies, and that has always been a big concern gi given the number of drugs that are used to treat breast cancer. So, um. We can provide reassuring, um, information to those who do choose to become pregnant. That, um, there, there shouldn't be any more complications, um, during that pregnancy.
And fatal outcomes appear very similar to those who, uh, don't, who have not had breast cancer before. Um, survivorship issues beyond pregnancy are also important, and Allison Survivorship obviously looks different for everyone. Now, you've, you've mentioned that multiple times. What are some of the key issues that you and others in the [00:59:00] EOBC community face in the years following treatment, like fatigue and mental health and, uh, concerns about recurrence risk?
What can you, can you kind of color that? Um, page in and help us understand, um, what the issues are from a survivor and, and, and also from a family perspective, right? Um, this affects your children, it affects your wife, affected your father, uh, affected a lot of people. Um, yeah. What does that look like?
Allison Mertzman: Um, I certainly, you know, when you think, when you're first diagnosed, I'm like, okay, well I'll just, I'll do what I need to do and I'll just get through it.
You don't think about everything that is going to happen after, and I don't know that anybody could because we can't predict the future. Um, I certainly had, um, I had a lot of issues post-surgery. I had a lot of nerve damage. I had a lot of nerve pain. I still have pain and swelling 'cause I [01:00:00] was diagnosed with the lymphedema post-surgery 'cause I did have to have some of my lymph nodes out.
Um, and that's a lifelong, the, i I we don't consider the lifelong things that are gonna end up being in your day to day. At the time you're in survival mode and you're like, yeah, I'm just gonna, I'm gonna do whatever you need. Yep. Do whatever you need to do. Take whatever, move, whatever. Just get me through this and then the get me through this is gonna continue for the rest of your life because then you're left kind of after this burn down of your body with the ashes of your life and you as a person.
The mental health piece was horrible. Um, I was having upwards of 30 panic attacks a day, calling you dad all hours of the night. 'cause I couldn't sleep. And I was, I was a mess. I couldn't sleep. I couldn't, I was obsessed with dying. [01:01:00] I was obsessed with recurrence. Everything was a recurrence in my head. I had one small pain.
It's in my bones, one, it's in my brain. Um, a headache is, is recurrence in my brain. Uh, a regular hip pain because I'm getting older. That's a recurrence in my hips. I, you know, any sort of breast pain, anything at all just became everything. I was obsessed with recurrence and it didn't matter how, how much I, I tried to be, I'm really good with, I love, like, peer reviewed articles.
I, I love research. I, it really helps me, like ground. Me and my dad would just repeat the statistics back to me so that I could just ground myself because I was, I had, I ended up doing EMDR therapy because I had so much trauma and. I think that people [01:02:00] don't realize the amount of trauma. That doesn't just happen physically, but it happens emotionally and mentally as you are trying to get through.
Because yes, I had wonderful outcomes. I was really lucky because I was pursuing curative care and, but during the curative care I was. Broken down to the smallest piece of me that I possibly could be. And so many other people I know are also broken down to the smallest people that they could possibly be.
And then you somehow have to build yourself back up. And it is one of the most challenging things you will ever do because then you're left with many people with chronic pain, chronic health issues. I still have chronic health issues that Erin knows we're still trying to figure out. We don't know what's going on.
And, and [01:03:00] so often I will come to her, I'll be like, Hey Dr. Cobain, um, so this is happening. And she's like, I dunno, I'm gonna have to refer you to one of my colleagues. And it, it's a really interesting. A thing to try and navigate as you're like, what are these ongoing health issues that have now happened post-cancer?
I will say an interesting thing is I did have polycystic ov, I still, I guess I still probably still have PCOS, but it made my periods really irregular and now I have perfectly, every 26 days I have a period. I've never had a regular period in my entire life. So it does the funkiest things to your body some bad, but I had, that's a good outcome.
I now can predict my period. I've never been able to do that. But yeah, with, with the trauma that we don't talk about the emotional wellbeing that you need to continue to wake up every day and realize your life is still [01:04:00] happening. Regardless of how bad things may feel or may be, your life is still moving forward.
I still needed to be a mom to my kids and I still needed to show up for them because I am here right now and I think I was living so far and the future of what could happen that I was missing the now, even if the now was hard to get through. I was still here at this point, and I have watched now my friends, I've seen people die because eventually you do.
Right? And some sooner than others. Like I said, and I have watched people lived such, they have lived such beautiful lives because they chose to be in the now. So much of that was because of therapy and I wish that I had pursued therapy soon. I wish I had started trauma therapy immediately. Um, it's probably not going to be on the [01:05:00] forefront of anybody's minds until they're done with actually getting cancer out of their body or mitigating as much of the cancer as they can.
But I wish that I had shared more with a therapist and a trained therapist who works with trauma patients, specifically cancer patients. And I wish I had pursued that sooner if I were gonna go back and do it all again, which I hope I never have to do. And that's the plan. Um, I wish I had started with a trauma therapist sooner.
Dr. Mark Pearlman: Yeah. And it, it takes a village. I and mm-hmm. We won't talk much about your spouse and your family and everyone who helps support you, but I know that was an important part of your, your recovery emotionally, uh, as well, Dr. Cobain, how does the survivorship care plan differ, if at all, um, for younger breast cancer survivors compared to older individuals?
What are some of the long-term [01:06:00] monitoring and support considerations that kind of go into your, uh, developing care plan for, uh, younger survivors?
Dr. Erin Cobain: Yeah, so I think in, in terms of monitoring for cancer recurrence, really, it's very similar. Um, it's, it's not. You know, too much difference regardless of whether or not the breast cancer was diagnosed as a young onset breast cancer versus, you know, sort of the more typical ages that we see breast cancer diagnosed in, in the postmenopausal years.
But I think that there are unique considerations, um, for younger women diagnosed with breast cancer, particularly with regards to the impact that the treatment can have on their health in the future. Not necessarily risk of cancer recurrence, but actually other potential health complications. So this has to be actually the principle discussion.
So for instance, you know, many women diagnosed with young onset breast [01:07:00] cancer, particularly those that have hormone receptor positive, HER two negative breast cancer, where we're administering hormonal therapy if they have higher risk features for cancer recurrence. We're often talking with them about actually.
Sort of, you know, basically putting them in a state of permanent ovarian suppression. So in other words, you know, um, you know, making menopause happen at young ages, potentially even as young as women in their thirties or in their early forties, and that complete withdrawal of estrogen. 10, even sometimes 15, 20 years right before, um, the body may naturally go through menopause can certainly generate health consequences and complications kind of in the immediate time.
Obviously the menopausal symptoms are very challenging for our patients with young onset breast cancer to navigate, right? [01:08:00] It's sort of like, you know, overnight they have hot flashes, they have insomnia, um, you know, they may have joint aches and pains, joint stiffness, whereas I think women who are premenopausal at the time they are diagnosed, um, not, not that the symptoms are necessarily less severe, but they're just not happening as abruptly.
So, you know, people generally have a little bit of an easier time kind of coping with that transition versus in younger, younger breast cancer survivors, understandably, that hormonal change happens abruptly and swiftly. And that is, um, that is something that I think, um, you know, causes a ton of symptoms that we really need to be cognizant of how we troubleshoot.
The good news is, is that we are starting to see a lot of newer medications, um, and treatment strategies, um, come into play that can really alleviate these symptoms of menopause. One of these is, um, a relatively new medication that's now on the market called ZA for hot flashes, [01:09:00] um, that a lot of our patients have actually gotten a ton of relief from.
Um, my colleague here at, at University of Michigan, Dr. Lynn Henry, is actually leading a study specifically in breast cancer survivors who have hot flashes from, um, basically premature menopause or anti-estrogen therapy and looking at the effectiveness of this medication. So I think we're, we're getting, um, more ways to help troubleshoot these side effects, which is good.
And then in the longer term. You know, one of the things that we have to be very cognizant of is that that withdrawal of estrogen, um, may also have impacts on bone health in the future. So women who, you know, undergo premature menopause or are on anti-estrogen therapies often have increased risk for osteopenia or osteoporosis later in life.
Um, I think that there is a theoretical concern that women who undergo premature menopause may also have increased risk of cardiovascular disease later in life. And then I also think in general, for women who [01:10:00] get chemotherapy, particularly anthracycline based chemotherapy, where there's potential cardiac toxicity later in life, right, because of exposure to that chemotherapy.
That's something that we're always cognizant of. Um, that tends to be true regardless of young onset versus administered in in older ages, but nevertheless, um, you know, these are some of the things that we're, that we're thinking about in the long run for individuals. Um, in particular, as I said, that are diagnosed with young onset breast cancers.
Dr. Mark Pearlman: Yeah, the feline is, is certainly one of the newer drugs on the market, but we've had, uh, SSRIs and SNRIs as well as, um, uh, a number of other non-hormonal agents that we can use to help patients, uh, with, uh, hot flashes, night sweats, uh, insomnia as a result of those things, uh, as well. Uh, and then the particularly challenging concerns [01:11:00] about, um, re uh, sexual function, um, uh, both, um.
Decreased desire as well as pain with intercourse. Um, but there are a number of, uh, effective therapies that are non-hormonal, uh, for those, uh, patients as well.
Dr. Erin Cobain: And I'll also just say one of the things that we've started doing here at the University of Michigan that we have uniformly received just wonderful feedback, um, regarding, is that we have also initiated a sexual health clinic, um, for our patients that have history of breast cancer.
Um, we are finding that, you know, in our 30 minute. Clinic visits, it's just not enough time, right? To discuss these issues that are affecting so many women. And you really need a dedicated visit to walk through that and to talk through that. Um, we're very fortunate that we have a nurse practitioner in our group who has a very strong interest in that, and she sort of offered to spearhead this effort.
Um, so we're now sending our patients to [01:12:00] that clinic for a dedicated discussion about sexual wellness and sexual health and, um, and troubleshooting many of these issues that breast cancer survivors face. And, um, like I said, I think that, um, we've gotten uniformly feedback that that has been, um, an incredible addition to our, um, survivorship plans for, for patients with breast cancer.
Dr. Mark Pearlman: Yes. And, and knowing our part of our audience is OBGYNs. I will just say that a number of years ago we started using, um, topical lidocaine for patients with dyspareunia with. Um, tremendous results. And there's even, believe it or not, there's a randomized control trial, um, using Lidocaine, uh, for patients with DYS nia, um, and with, with great success of those who have vestibular tenderness, uh, for, uh, deep bone pain.
And then our physical therapy partners therapy, um, have also been very effective in, in helping to treat dysuria due to, um, [01:13:00] musculoskeletal conditions. Last element I piece of this I wanna talk about is the role of social media and the community in early onset breast cancer. Allison, your presence on social media has been incredibly impactful.
Can you talk about the role that online communities and social media play, um, for young women who are navigating a new breast cancer diagnosis?
Allison Mertzman: I have talked to thousands upon thousands of women at this point who've been diagnosed. And not every woman lives in a huge town with a ton of resources. You know, a lot of people are looking for some sort of help.
What do I ask? What do I do when they're living in a small town with less resources and they're going to larger clinics and trying to figure it out? And I have worked really hard to try and give resources, at least like [01:14:00] basics of, this is what you need to ask, here are the questions. This is what, and, and I will talk women as they're, as they're getting through their diagnosis and they're like, oh gosh, I haven't heard back from my doctor, but it says that I have cancer.
And I'm like, okay, let's, let's talk about this. You're gonna feel much better. They give yourself two weeks. Two weeks. You're gonna need to do this. And I just give them like a quick just rundown of, Hey, let's keep our wits about us. Okay. You're not the first woman to be diagnosed with breast cancer.
You're certainly not gonna be the last We're gonna get through this. We're gonna do this together. And I think that my audience will tell you that I am very personalized and hopping into my dms and talking them through stuff. Um, because it's very scary. It's very scary when you don't have a friend and when you don't know anybody and you don't know what you're doing and you've just been diagnosed and you, and you have nowhere to turn.
And I've become a place to turn to. And I have joined. You know, they have some really great groups. There's one called The Breast Ease, which is a really awesome, for young women who have [01:15:00] been diagnosed with breast cancer and they do retreats, they have resources, they help with finding. There's tons of, at, at least when I was diagnosed, there were a lot of grants to help with IVF if it wasn't covered to, um, get the things that you need to get done or cold capping, for example, which I briefly mentioned, but it was to save my hair.
And it's just so much of this is community outreach and making people aware of the resources that they have and the things that they can do, and the things that are within their control. Because the very first thing you're gonna feel is out of control. That's the very first thing you'll feel after a diagnose.
I have no control over this. Oh my God, it's in my body. Oh my gosh, what am I gonna do? How am I gonna, how am I gonna, how am I gonna do anything? I don't, I don't know. I don't know what to do. And so you're gonna turn to the person that is usually me, and I will sit there and I'm like, send me your results.
What are you doing? Show me. Okay, okay. This is what you're gonna do next. This is what you're gonna do next. Because I. [01:16:00] You know you're gonna get a mammogram, then you're gonna get an ultrasound. And if they find something on the ultrasound, they will likely send you for a biopsy. And depending on the size, it's either gonna be ultrasound guided or it might be MRI guided.
We don't know. And so that's why I try to keep putting these resources out for people so that they just feel a little less alone. If you can see somebody who has the same diagnosis as you and is on the other side, it is truly the most comforting thing in the world. All you wanna see is someone who has survived and all you're going to hear about are all the people who died.
They, I, I people just lose their filter the second year. Like I was diagnosed breast cancer, like, oh, my grandma died from that. And you're like, thank you for telling me that. I did not need to know that. I wanna hear who has survived because I want to live. All the women I know who've been diagnosed have a very, very strong will to live.
And what they need to see are other people who are living. With or without this [01:17:00] disease.
Dr. Mark Pearlman: So you're providing great support, and I know you're not giving medical advice. You're, you're just being support No. Of people. I have
Allison Mertzman: no medical, I have no medical advice to give. The only thing I have to give is resources of this is, this is the process.
I can't tell you what you have, I can't tell you what you don't have, but I can certainly walk you through my experience.
Dr. Mark Pearlman: Right. And Dr. Cobain, uh, support groups have been around for a long time in, uh, in the breast cancer communities and been unbelievably helpful. But, um, since COVID, a lot more of this has moved online.
Um, and from a professional standpoint, what are your thoughts on the increasing role of. Patient advocacy and online communities and raising awareness and providing support, um, for things like early onset breast cancer?
Dr. Erin Cobain: Yeah, I mean, I think in [01:18:00] general it's had a tremendously positive impact. I mean, I'm always so struck by I think that the types of questions, many of the times that patients come to my clinic asking clearly indicate that they are highly informed right when they show up the very first time in my clinic.
So just the availability of, you know, through either these communi communities or just online in general, right, to be able to gain information and get access to resources has been incredibly beneficial, um, to help women NAV navigate, which, you know, something that is. Probably the, one of the most difficult days in their life, right?
The day that they come to meet, um, the team of doctors who will be treating them for a cancer diagnosis, right? Um, so I, I think that one of the ways in which it's incredibly beneficial is that people come to the table often with so much background information that they're asking really, really excellent and nuanced questions from the get go.
Um, that really help us [01:19:00] understand how much we can really get into the weeds in that very first discussion. You know, I think it's different for every patient. Sometimes I meet a patient and it's very clear that they're overwhelmed and you know, I'm gonna spend an hour with them that day, but maybe they're not gonna be very well served.
Me telling them about. Every single possibility and every single thing that could happen, because that might be emotionally very overwhelming. And maybe we need an intro conversation that is, you know, sort of more of the basics at the beginning. And then we have a follow-up discussion that really gets into the weeds.
Whereas there's some other patients that come to the table and they're like, yeah, yeah, yeah, I got, I got all this. I know all this. Right? I don't need the basics. I really need more specifics. And, um, I think those patients who come to the table in that circumstance have done a lot of the background and, um, probably have used a lot of these communities to gain a lot of that knowledge.
I will though, say that there are some potential downsides to consider of, um, you know, sort of the social media [01:20:00] experience that breast cancer survivors may have. Um. And one of them is that I think that when naturally when women hear stories or, um, you know, interact or converse with other women who have had really severe symptoms or side effects of the treatment, um, that they have received for their breast cancer diagnosis, um, that can certainly increase the reluctance of another individual to embark upon that same journey.
And I really spend a lot of time trying to explain, you know, to my patients that everyone is unique, right? And so just because one woman that you have connected with online or you know, through, um, you know, some, some sort of resources for, you know, um, breast cancer survivors, just because they had an awful experience does not mean you will have an awful experience.
Um, and sometimes, you know, um, that, that, that can be a little bit difficult when, when. People [01:21:00] develop sort of a personal connection or a personal association with, um, a group or an individual who has heavily weighted their thoughts, right? About a therapeutic or about the benefit of something. So that's, that's part of one of the things that is I think a, a little bit of a struggle in our clinics.
And I find that if we actually just have an open and honest conversation from the get go about it, um, it tends to go much better. So, for instance, if I say to patients like, I'm well aware that you may be engaging in having a lot of conversation online and through support groups, um, I just wanna let you know, you may hear some things that are not always medically accurate or, um, not gonna be reflective of what your experience will be.
I think setting that expectation upfront really then helps people navigate as they move forward and they're able to take from it. What the good right that they can get from it. 'cause there's [01:22:00] so much good that they can get from it. But I think it's also very important that people be aware of how it could impact them in a, in a potentially negative way.
Either their emotional health, hearing a lot of, uh, hearing a lot of stories from people who have had a hard time isn't always emotionally uplifting and it's not always the right outlet for you. Maybe it's gonna be something that's really beneficial six months in, but in your first month in might not be where you need to be.
Right. Emotionally. Um, so we talk a lot about that and navigating that.
Allison Mertzman: Dr. Cobain, I am cracking up over here because my, the first thing my oncologist said was like, I'm sure you're gonna be, you're gonna do great. I ended up like, not a case. I was like, I had an allergic reaction to Neulasta. They had to switch me over to Zzi.
I had an infection the very first time I was in the er, I had four blood transfusions. Like, I certainly did not have, most people have a better experience with chemo than I did, and, and [01:23:00] my oncologist was like, I, I haven't really seen anybody have this hard of a time at your age. And, um, I was laughing because I, I, I, I'm grateful that I gave like this, this version, but I still had, it was still completely.
Worth every single thing I did because I got to the other end and that was the goal. I think so often people look at like a birth plan. They look at, um, I want this to happen. I want this to happen. I want this to, I was like, I do not care what happens. I just need you to get me from point A to point B. I don't care what the road looks like in between.
And I think that it's goes so far into trusting your care team and trusting people like you and just understanding that like, you don't know what your map is gonna look like, but we are certainly going to walk this road together. You are gonna be on the bumpy road. We're gonna be right alongside you.
And that's, that's what we're gonna do. [01:24:00] And I think that that's such a good and healthy way to give your patients a a, a healthy way to look at their treatment plan. Okay.
Dr. Mark Pearlman: So I, I wanna end kind of a little bit upbeat here 'cause this is, uh, this is sometimes a difficult conversation to have, right? But as Allison will show you, she is still smiling and living her life every day and, and, and the best way possible.
So it's the start of a journey, not the end of a journey, uh, which is hope in future directions. In early on set breast cancer research. And so, Dr. Cobain, what are some of the promising areas of research or advancements in treatment? You know, targeted therapy, small molecule therapy, immunotherapy of all entered into this PARP inhibitors you talked about in the, in the, um, those with homologous recombination deficiencies.
Uh, BRCA mutations. Um. Where, where, where are things now? And
Dr. Erin Cobain: yes, [01:25:00] so I think that we are starting to see certainly advancements in therapies. So I'm gonna give a few examples. Um, triple negative breast cancer, for example. Um, just within really the last five years, we now understand that not only do those patients benefit from chemotherapy, but they also have.
Substantial benefit from the addition of immunotherapy, um, to their chemotherapy. Um, and because of the approval of immunotherapy and the routine use of this, we now probably have many more patients, um, with triple negative breast cancer that are cured of their triple negative breast cancer. Um, albeit this is sometimes a difficult road to walk because immunotherapy has its own unique set of side effects, but nevertheless, in general, um, the benefits of immunotherapy and early stage triple negative breast cancer generally outweigh the potential risks.
And I think because of the routine use of immunotherapy, we have now started to see. [01:26:00] Improvements in, in outcomes for our patients with, you know, generally regarded to be the most difficult to treat subtype of breast cancer. And you know, I think with triple negative breast cancers, they're more likely to be genetically associated, which means that we are gonna see more triple negative, these very sort of aggressive breast cancers in young women.
Um, so the ability to utilize. Um, immunotherapy, I think is, um, you know, something that has certainly, uh, given us, uh, you know, a lot of reason, um, to be hopeful. And I think it's even gonna carry forward more in the sense that some of the clinical trials that are now going on in early stage breast cancer are including a novel form of therapy, um, that's been FDA approved in the treatment of various forms of metastatic breast cancer, known as antibody drug conjugates.
So these are antibodies that help really target a therapy. Toward a cancer cell that expresses that [01:27:00] target. And then the antibody is linked to a highly potent chemotherapy that can actually selectively be delivered to the cancer cell. Um, and sort of the degree or the amount of chemotherapy that's able to be administered when we target it via antibody selection, um, is much more potent than sort of standard chemotherapies.
Um, and these drugs have really been game changers in the treatment of patients with stage four breast cancer, which is why we all sort of eagerly await the clinical trials. And, and what we will see, um, once the trials, uh, are reported in patients with early stage disease, we started to see some of those preliminary results.
We have no FDA approvals to date for antibody drug conjugate therapy and early stage disease. But, um, I think that this is, this is something we're, we're sort of, you know, eagerly awaiting, um, for, for the future. I also think that there is a real need to explore additional targeted therapies beyond [01:28:00] PARP inhibitor for people that have genetic susceptibilities to breast cancer, um, that's a population that's really prime for use of targeted therapies because you have the opportunity to actually capitalize on the genetic defect in the cancer cells.
That was the tumor initiating event. Um, so I think some of the things that we're all hopeful for moving forward is that it's gonna go beyond the PARP inhibitor and we're gonna have other targeted therapies that really, um, almost can utilize the fact that these cells have unique deficiencies in DNA repair mechanisms, um, at a genetic or a genomic level.
So those are some of the things that we're looking forward to in the research in the years to come.
Dr. Mark Pearlman: Thanks. And Allison, based on your journey and the many, many, many connections you've made, what are. Kinda your hopes for the future of early onset breast cancer research and support and awareness?
Allison Mertzman: Um, I think a big one is that [01:29:00] we, um, understand that, uh, the way that breast cancer shows up in people is different.
I did not show, my breast cancer showed up, uh, as manor's disease and as, uh, armpit pain and breast pain, which we've all been told it doesn't hurt. It does. And I had no lump, I never had a palpable lump that anybody could ever feel. From my first initial meeting with my ob gyn to my oncologist, there was never a lump that was able to, but it was there.
There was a lesion there. We all saw it and we took it out. And so it existed. And I think that understanding, um, symptoms of breast cancer can vary wildly. And I know that many women also had the numbness that I had in my arm, and it was because the lymph node was pushing on a nerve. I had some affected lymph nodes and they were pushing on nerves and giving me numbness in my arm.[01:30:00]
I think believing women when they come in and tell you that something is wrong is a big one, and I hope that we start believing women more often than not. And I think, you know, for the future, I hope that we can do more research into recurrence and, um, how to prevent recurrence from happening. I would love that.
And should it come back as stage four, how do we make stage four a chronic disease and not one that people are going to die from right away? I would love to see breast cancer turn into some sort of chronic disease that we just deal with for the rest of your life. But you can live into your seventies, eighties, and nineties rather than watching so many of my friends pass away.
And you know, it's inevitable for them and we know that. And it's always just a matter of how long. I would love to see it become a chronic disease much more [01:31:00] than something that young people are dying from. And I think taking it seriously, you know.
Dr. Mark Pearlman: Well, this has been an incredibly insightful conversation, Dr.
Cobain and Allison, thank you so much for sharing your expertise and your personal experience with us today. Um, any final thoughts you'd like to leave our listeners with?
Dr. Erin Cobain: I think I would, um, just like to say that we are going to continue, um, the research efforts in young onset breast cancer. It is so, so critically important that we understand the why, right. Um, we sort of started this conversation there and the fact that we don't yet have a firm understanding as to why incidence is, is rising in young women.
Um, and I think, you know, because it is, and that's sort of the fact right now, we also need to just keep increasing awareness of this, right. Um, [01:32:00] as physicians we need to think, you know, even if it's unlikely, as Allison said, right, sort of these unusual symptoms that young women may present with. Um, we need to have an acute awareness.
We need to keep it in the back of our mind, um, because of, you know, the possibility that early intervention and early detection, um, could be the difference in saving somebody's life.
Dr. Mark Pearlman: Allison, any final thoughts?
Allison Mertzman: Yeah, to piggyback on that, um, 'cause I know I'm gonna certainly send this out to my people who follow me.
If you're listening and you were just diagnosed with cancer, know that there are so many people working really, really hard to make sure that this is something that is a survivable disease for you. And also that you are far from alone. You are not the, like I said before, you're not the first per person to walk this journey.
You're not the last person to walk this journey, [01:33:00] and in the end, you're gonna find a way to live your life.
Dr. Mark Pearlman: And with those very hopeful and realistic thoughts. Mm-hmm. Again, thank you both for being here today.
Dr. Erin Cobain: Thank you. Thank you.
Dr. Mark Pearlman: Well, thank you both for joining us for this very meaningful episode. I'm deeply grateful to Allison and Dr.
Cobain for sharing their stories and insights. You know, as clinicians, we have an opportunity and a responsibility to better serve our patients by understanding the unique challenges of early onset breast cancer. We encourage you to review the guidelines, refer patients for appropriate genetic testing, and most of all, listen to our patients, especially when they know something's not right.[01:34:00]
Outro: To find out more information about current evidence-based guidelines on risk factors in screening, please take ACOG's early onset breast cancer CME accredited online courses@acog.org slash bc.