For young women, a breast cancer diagnosis presents a unique set of challenges not only due to age but the biology of the disease as well. While a diagnosis under the age of 40 is rare, the disease tends to behave more aggressively. Compared to older breast cancer patients, young women treated for the disease tend to have an increased risk of experiencing emotional distress, treatment-induced sexual dysfunction, and concerns about future pregnancies.
This is where Dr. Ann Partridge steps in. Her BCRF-supported research seeks to understand the complex issues young women with breast cancer face. Dr. Partridge studies the biology behind their breast cancers as well as focusing on how young women make their way through their experiences – whether it’s physical or emotional.
A BCRF researcher since 2016, Dr. Partridge is co-founder and director of the Young and Strong Program for Young Women with Breast Cancer and serves as the Director of the Adult Survivorship Program at Dana-Farber Cancer Institute and Brigham and Women’s Hospital. Dr. Partridge is a Professor of Medicine, Harvard Medical School.
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Chris: I’m Chris Riback. This is Investigating Breast Cancer, the podcast of the Breast Cancer Research Foundation and conversations with the world’s leading scientists studying breast cancer prevention, diagnosis, treatment, survivorship and metastasis… which just happens to be the topic of today’s conversation.
A breast cancer diagnosis for anyone, of course, can be life-altering. For young women, it can be even more difficult: Not only because of the time in life – finishing school, building careers, raising families – but also the biology: The cancer can be aggressive, and the chances for recurrence significant.
Which is only part of what makes Dr. Ann Partridge’s work so important and remarkable. On the biology, among the areas she studies is the “why”: Why is the cancer so aggressive? But she also focuses on the how: How these young women will make their way through the challenges.
Dr. Partridge is co-founder and director of the Young and Strong Program for Young Women with Breast Cancer, an extraordinary, unique offering that has guided more than 4,500 young women on their journeys through and beyond cancer, offering comprehensive care, support, and education tailored specifically for them.
More on Dr. Partridge: She is a Professor of Medicine at Harvard Medical School and serves as the Director of the Adult Survivorship Program at Dana-Farber Cancer Institute and Brigham and Women’s Hospital. She has been a BCRF Investigator since 2016.
Chris Riback: Dr. Partridge, thanks for joining me. I appreciate your time.
Dr. Ann Partridge: My pleasure, Chris.
Chris Riback: Breast cancer, of course, presents an incredible challenge and fear for any patient. Let’s focus on what you focus on – What is different, maybe harder but definitely different, about breast cancer in younger women? And for purposes of the conversation, and I guess for purposes of your work, how should we define young?
Dr. Ann Partridge: That’s a fantastic question to start off. And I completely agree with the first premise, which is a cancer diagnosis and breast cancer specifically is a scary diagnosis. It’s scary for women or men of all ages, but it is probably the most scary for our youngest patients. And that’s with good reason. And when we think about young, we’ve seen in numerous data sets over the years, many studies, many populations both in the United States and across the world, that when a young woman develops breast cancer, on average she’s more likely to die of it. I mean, that’s just the stark reality, even in 2019, and that’s not okay. That’s not acceptable, right? We need to improve cancer care and breast cancer care specifically, which of course is the mission of the BCRF, for women of all ages and particularly for our most vulnerable, those who are at higher risk of hearing from it again and potentially succumbing to it.
So that’s the reality for young women, and that’s why they’d be more scared. And young here can be defined at 40 or younger, which is where the data are most robust, the strongest data to support that there’s a higher risk of hearing from breast cancer again, and having to fight it again, and potentially dying from it. So that’s the stark reality of the age disparity.
And the things that are different for young women, beyond a higher risk of recurrence on average … It’s not true that every young woman’s high risk, but on average are that, one, young women are more likely to get the more aggressive breast cancers. So when we think about the buckets of breast cancer, young women are more likely to get the higher grade, HER2-positive or triple negative breast cancers. The incidents, the likelihood of those occurring as women get older go down, and so they’re more common in younger women. That’s one. Two is young women typically aren’t screened. In this country, we don’t begin mammogram screening, which is our gold standard screening, and it’s the best we’ve got for populations. It’s not perfect, but we don’t even begin doing that until women are in their thirties or forties. And so in young women, you’re typically getting an unscreened cancer diagnosis, which means the tumors are bigger, and they’re more likely to be node-positive. And part of that also has to do with the biology of the tumors they get, those higher risk tumors.
So you’ve got this double whammy of being more likely to get more aggressive disease, and more likely to have it be more advanced when it’s detected for the youngest patients. That’s kind of the biology stuff. That’s the disease stuff. And then you add on to that, and this is where young women are really different because older women can get risky tumors, and they can obviously be diagnosed with more advanced disease. But young women are diagnosed at a time in their lives when no one expects breast cancer. But women going in for mammography are getting screened for a cancer, right? So they know that they’re at risk for it. Young women are just busy, living their lives, trying to start young families, trying to start careers, trying to get through school. And then, wham, they can be hit with a breast cancer. And it’s completely unexpected and completely non-normative. It’s not something that their friends are facing. And then of course all the treatments and all the side effects. Even if you don’t need that much treatment, a young woman having hot flashes at the age of 30 compared to her peers who are out, again, having young families, partying, whatever they’re doing, making romance. This is not something that you have peers to support you for or that you remotely expected.
And so this is another area where there is a disparate problem for young women. They’re more likely to suffer, even if they’re going to survive. And the vast majority will survive their breast cancer, thank goodness. Even though it’s worse for young women, they still are most likely to survive and do well in the long run from a disease standpoint. They’re more likely to suffer emotionally and socially because of the diagnosis of breast cancer. Those hits occur with beauty, sexual health, fertility, emotional health, anxiety, fears, depression. These are all the things that young women are more likely to have to contend with. So, all of those things come together and just make it just harder for young women to be diagnosed, treated, and then kind of thrive beyond the breast cancer.
Chris Riback: It’s quite an overwhelming set of factors. And a couple of things jump out to me. One is, and this seems exactly consistent with what I take from your approach to this challenge. It’s an incredible combination of the biology plus the emotional. As we both stated at the top, that’s surely the case for everyone who suffers from this disease or any disease. When any of us gets something unexpected and something so potentially dire, that’s very shocking to say the least, and there’s that combination of biology plus emotion. But you’re describing the unique components of it for this segment of the population, and so I want to talk to you about that.
A couple of questions to make sure I’m understanding on the biology portion so that we can level set there. What’s the why behind it being, on average, a more aggressive form of breast cancer? So I’m getting the fact that young women won’t have mammographies necessarily in practice. And so I get the fact that because of that, when they’re noticing breast cancer, when that’s coming up, it might then be at a later stage, in a more advanced age, et cetera, et cetera. But why a more aggressive form? Why does that go more towards this audience than not?
Dr. Ann Partridge: That’s the million-dollar question. And to be honest, we’re not 100% sure. That’s what a lot of our researchers are working on, including myself. That being said, some things we do know that point in the direction of why. One is that young women are more likely to have a hereditary predisposition to their breast cancer. They’re more likely to have a BRCA1 or two mutation, or some of the newer genes that we now know predict breast cancer risk and the development of a cancer. And those genes are associated with developing more aggressive breast cancers. So, for example, BRCA1 mutation carriers, it’s more prevalent. The hallmark of having a mutation is early onset breast cancer or young age. They’re more likely to have triple-negative breast cancer, which is one of our more aggressive subtypes. Young women or people with p53 mutations, which is fortunately rare, are more likely to have HER2-positive breast cancer, which is more aggressive. The good news is we have really good and effective treatment for it these days, but they’re more likely. Those tumors tend to be larger, node-positive, and require kind of a kitchen sink approach, on average, for the treatment.
So, some of it’s the genetics. And then you know the rest, we’re trying to work that out. And there’s some really interesting kind of early data suggesting that there may be some kind of deeper genomic changes in the tumors that arise in young women, and that there may actually be some evidence that women who are immediately postpartum, meaning having recently had a baby, that the biology of the cells as the breast changes back to a not postpartum state may increase the likelihood in that short term of a more aggressive biology of cancer. There’s some data suggesting that, certainly not ready for prime time to think about with patients yet, but we’re to figure that out.
Chris Riback: Two questions then: One, one the genetic factor and that component. Is it proper of me to believe that women who have a genetic predisposition, whose mothers, older sibling, older sisters, aunts, et cetera, grandmothers, that that they would be more likely to potentially get mammograms at an earlier age. And so therefore when you talk about, which I would assume to be the case, that many women don’t get them at an early age. We don’t give them until 30. Are you talking about a subset who don’t have a genetic predisposition, or is it even the case that with a genetic predisposition too many women may be in a situation where they’re not getting mammographies at an early enough point? That was one question. I’ll ask the other one-
Dr. Ann Partridge: Yes. There are too many women who have family histories who aren’t having this discussed, who aren’t getting tested, and who aren’t getting any screenings, even when they have a hereditary predisposition. And you could be tested and be found positive. In the general population, just to clarify, the current guidelines for screening range, depending on which group you’re looking at, whether it’s the US Preventative Services Task Force or the American Cancer Society, range from starting at 45 to starting at 50. So your average person in the population, a proportion of whom will have an unknown hereditary predisposition to breast cancer, they’re not even being recommended to get screening until they’re beyond the young age of breast cancer. That’s one.
Two is, even when we know someone has a hereditary predisposition, and we do start screening, the recommendation is 10 years before the earliest onset of breast cancer. So if a woman with a BRCA1 mutation had a mother who had breast cancer or a father’s sister who had breast cancer in her thirties. Let’s say we start screening at 25, and we do mammograms alternating with MRIs, which is what we recommend, generally, if she tests positive. Even in that setting, A, our imaging isn’t perfect. Mammograms are not great in younger women because its breast tissue is more dense. MRIs are more sensitive, but they’re still not perfect. And then the other thing to remember is that screening is not prevention. And so screening might pick it up earlier, yes, but it’s still going to be a cancer.
Chris Riback: You’re seeing it there. That is such a, such an important point.
Dr. Ann Partridge: And so that’s where we offer women prevention, which is a heavy load too, if they’re very high risk. But that’s a really hard thing also to offer a young woman when she’s, again, in this kind of developmental life stage where the idea of taking breasts off or taking out ovaries when you haven’t had your babies yet, especially, for many of these young women. Especially in our society, many women are waiting for lots of good reasons. That’s a pretty challenging situation as well.
Chris Riback: Yes. That is not part of the narrative, or the expected narrative, or the desired narrative for anybody, no doubt, particularly at that age.
Dr. Ann Partridge: And the good news is we have lots of supports for these patients. For these women who we call “previvers,” who are at risk, we’ve got lots of work going on to try and support them to make the best decisions for themselves, whether it be prevention or monitoring, and aim for early detection, if they’re ultimately going to get a cancer. And then, of course, once women develop the disease, if they’re destined to, to get them through and beyond. So I don’t want to be all gloom and doom here. It’s just it’s a tougher fight, and you need more to support our younger patients.
Chris Riback: And I want to ask you about some of those efforts, of course, particularly your programs. “The Young and Strong Program for Young Women with Breast Cancer,” which by the way, that’s just great branding, young and strong.
Dr. Ann Partridge: Thank you. Came up with by one of my patients, by the way. One of my patients came up with that.
Chris Riback: I hear that. So you do get so many scientists, researchers, doctors, caregivers do get great feedback and insights from their patients. I have heard that. So, that’s terrific. And I’m sure you share all of the royalties off of merchandise and all the selling of stuff.
Dr. Ann Partridge: Yes, if only.
Chris Riback: Yes, I know.
Dr. Ann Partridge: That part, we need some help with.
Chris Riback: I understand. And I’m teasing, of course.
Dr. Ann Partridge: Thank you BCRF, given our lack of ability to get our own royalties in this world… at least in the clinical side.
Chris Riback: That’s not what we’re looking to you for. We’re looking to you for the science and the research. So I wanted to ask you about that. I wanted to ask you about the Adult Survivorship Program. I had just one other question about the biology that you were talking about, and that was the postpartum situation and the way the tissue, the cells change as the breast returns. You said it differently, afterwards and the changes that go on. Is that aligned with genetics, with family history? Or is what you’re describing there, that’s kind of irrespective to family history, and therefore that’s a period to be aware of, separate from the family history question?
Dr. Ann Partridge: That’s a fantastic question. And the answer is probably. Right? If you’re higher risk, then any perturbation, any change that promotes a cancer is probably going to be more likely to promote it in a person who’s higher risk because of genetic instability or inability to repair genes, which is the problem with genes like BRCA1 and BRCA2 mutations, but that has not been specifically looked at yet that I’m aware of. So these two kinds of … Different kinds of research have been looked at independently, and therefore the evolving data that mammary changes after a pregnancy, which is called involution, technically, that there’s a lot going on in the breast, and that there’s an influx of immune cells and what we call immune signature clustering that might predispose the breast cells in there to be more likely to turn into a cancer. And that probably is happening, if it’s happening, both in a person who’s not high risk, but it’s most likely … If it’s happening in people who are not high risk, it would happen probably even more in women who are high risk. Does that make sense? And there’s some epidemiologic data that this may be true. But in women who are very high risk, it may not matter whether they’ve had a pregnancy or not. Whereas it might be more likely to push someone towards a cancer, should they have had a more recent pregnancy, if they’re not high risk. If you’re following me.
Chris Riback: I am following you. Now, I know you’re looking … You’ve got nothing to do. You have no studies going on, no research, no programs that you’re running. So, there you go. There’s another thing potentially to look at.
Let’s turn, and tell me about Young and Strong. Tell me about the Young and Strong Program for Young Women with Breast Cancer. What is it? How did you create it? with others, I’m assuming. And what does it provide?
Dr. Ann Partridge: So, yes, it’s a team effort. And any of the research I’m talking about, whether I’ve been a part of it, or it’s been from the larger cancer research community, it’s all a team effort. There’s no … There are competitors, but the fact is that we all have to work together to figure this out. And from a clinical standpoint, while I love the research, there’s a lot that we already know that I realized early on patients were coming to me for a second opinion, or they were seeing a colleague who was maybe new or wasn’t focusing on young women, and they weren’t hearing about things like fertility. Or they’d come from a second opinion, and they wouldn’t have had genetic testing yet, and they were 35 years old, and it might’ve impacted on their treatment decisions. And they certainly weren’t getting, across the board, more comprehensive kind of survivorship and supportive care once they were kind of through the immediate treatment trenches.
And so in 2005 at the Dana-Farber, with support of patients and philanthropic funds and colleagues, we established this program for young women with breast cancer, which we rebranded to be Young and Strong. And again, coming from the patients saying, “Look … ” And patients have also said, “You don’t have to be strong.” And I say back to them, “That’s right, but we’re going to be here and be strong to help and support you in case you’re not strong. We’ve got your backs.” And so we created this community basically, and we’ve served over 5,000 new young patients directly in our clinic and scores of women. beyond that, I’m sure.
And we’ve been working for now over a decade to try to not only push the field forward in terms of research, but to help disseminate best practices, and best supportive care, and best, you know, “Make sure you talk to the young woman about fertility before she starts her treatment. So if she wanted to do anything to preserve fertility, make sure you plug her in with the psychosocial supports, with a social worker, or with resources in her community all along the way because each step of the way has different stressors. Make sure that you think about the aftermath for this young woman, not just when you’re talking about the risks of chemo before you have them sign the consent, but later when she’s still feeling tired, six months after she’s finished all her treatment, or when she’s feeling down, or when she’s having hot flashes, or when, she doesn’t know it, but her bones may be thinning, and you’ve got to think about bone health in the long haul because she needs to have those bones for another five or six decades.” And so this is the kind of comprehensive approach we try to follow.
And as you alluded to earlier, this is something that affects not just the patient, but the patient’s whole system. So we’ve got to think about her loved ones, her partner, for young women, if she has a partner, or her ability to partner, or her children. And so trying to kind of have a comprehensive approach to kind of total patient care and getting women to, not only live through a cancer, which of course is super important, but kind of thrive through and beyond a cancer diagnosis and treatment. And that’s where the challenges, but we’re up for it. And this program, I think has really helped more young women to cope, to find community and support and resources and better care, and we’ve tried really hard to disseminate our best practices beyond the hallowed halls of Dana-Farber and to get to not just our affiliates and satellites, but to share resources with colleagues across the country. And it’s super cool because we’ve actually developed this really nice collaboration with folks across the world.
And now every two years we meet in … Right now we meet in Lugano, Switzerland, and we develop guidelines for young women. And this is in conjunction with the European School of Oncology, which is based in Europe, obviously. And we develop guidelines for best practices, you know, “How do you distill the latest research to apply to our youngest patients?” Because sometimes people don’t know whether it should apply to the young patients. And so we sit there, a group of experts and patients and advocates sit and think about it in the context of our youngest patients. And then we publish it, so it’s available for other providers and researchers and patients to learn from and potentially impact on their care. That’s exciting.
Chris Riback: It is exciting, and it’s a really important point, I think, for any listeners or anyone really to know about. In my own learning about your efforts to prepare for this conversation, I saw it. I mean, that you’ve put together, and by you, I mean the royal you, you and colleagues, et cetera, have put together videos, slideshows, speeches, presentations, data, guidelines and more. I just think that that’s, I’m sure for you as well, that’s imperative for folks to know about. And it said to me as well that, among the many ways I’m interpreting you seeing your role … You are a researcher. You’re a scientist. You’re a doctor. You’re worried and focused on the biology. You’re worried and focused on the emotional, mental, psychological components, but you’re also a communicator. And that the communications on this is … it feels like is part of how you see your role.
Dr. Ann Partridge: Yes. And for any researcher, if a tree falls in the forest and no one hears it … And so we do need to be able to, not just share our results, but there’s a whole school of, “How do you disseminate the findings and help to implement changes in care?” And even with a hot new drug where you have a whole, usually a pharmaceutical industry pushing the drug and sales forces doing that, it can take three years for a drug to get disseminated to the majority of people. Now try and think about like supportive care approaches. It’s just so much harder. And so we, people who are working on this, need to remove the barriers and make it accessible because we don’t have sales forces. And so we need to make it kind of a priority in that … And most providers want to treat their patients better. And so, getting out there, shouting it from the hilltops, developing resources that are good for the providers and good for the patients and accessible, that’s what we’ve tried to focus on.
And personally, I’ve been very grateful because groups like the BCRF recognize that. And they support my work, that’s not drug development in this context; it’s improving survivorship care for young breast cancer patients and developing an intervention right now that is web-based, so phone, web, laptop, tablet, log on from home.
Chris Riback: Yes, all the ways we connect.
Dr. Ann Partridge: Yep, and can log on and get support in the middle of the night. That’s what we’re trying to do. And their providers can refer them to that, which helps the provider because then they’re not calling the patient … Excuse me, then the patient’s not calling them in the middle of the night or suffering, more importantly, for six months until their next follow up visit in survivorship, which is more likely to happen because a patient’s not going to page their doctor in the middle of the night for a hot flash. But if there’s a remedy for that that they could access from a trusted source, wouldn’t that be wonderful? And so that’s what we’re kind of working on.
Chris Riback: And to do be clear, and you’ll correct me if I’m wrong, but then I need to ask you about the research and two of the studies that you’re working on right now. The Young and Strong program as well as the Adult Survivorship Program, my takeaway was that those are unique programs, but there seem to be deep connection and maybe even some overlap, but that they are separate programs. Did I interpret that right, or are they kind of more closely aligned than that?
Dr. Ann Partridge: Yes. So at Dana-Farber, we have these two unique and separate programs, the program for young women, or Young and Strong, and the Adult Survivorship Program. And they are separate, but at Dana-Farber are unified because I am the director of both of them.
Chris Riback: Got it.
Dr. Ann Partridge: But the goal of the Adult Survivorship Program is to help to support survivors across the cancer spectrum. Right?
Chris Riback: Okay.
Dr. Ann Partridge: But there’s a lot of overlap because survivorship begins at diagnosis, and things like oncofertility and fertility preservation for young adult and adolescent cancer survivors is an issue, for example, that’s not unique to breast cancer survivors. It’s something that’s appropriate for all young cancer survivors from the date of diagnosis. So, there is a fair bit of overlap. And so I started to run Adult Survivorship after some of the successes of our young women’s program. And the ability to kind of scale up has been a bit of a challenge. “How do I help the young testicular survivors?” things like that. So, we work on that. And it’s a much different scope and a larger team and very multidisciplinary, even beyond the breast cancer trenches because you have to think about all of the other diseases for that. But there’s a lot of overlap. And I think the Young and Strong Program has helped to provide some experience for how to better deliver care and how to better disseminate findings and things that we already know within a large cancer center and then beyond to people who are not coming into a comprehensive cancer center like ours, so they’re synergies.
Chris Riback: Got it. Understood. And yes, I understand how the Adult Survivorship, it sounds like covers a range of cancers. And that’s a whole separate conversation. I have gotten so much from talking to scientists and researchers about how much gets learned in one area of cancer research or care, and then goes into an experiment or a study to try to apply it in other areas. So, makes total sense.
Dr. Ann Partridge: Right. And it helps that … I’m all against, as I’m sure you guys are, we’re against silos, right?
Chris Riback: Yep.
Dr. Ann Partridge: And it’s easy to have a silo when you’re busy and you’re focused. And so one of the things that we work on really hard is not silo-izing the research from the clinical care, right? These things have to be kind of iterative and go back and forth from bench to bedside to population. And then on top of that, I don’t want to siloize breast cancer in either direction. So, yes, we’ve separated cancer now in order to make breakthroughs, but what we learn in breast cancer, we can now sometimes move to lung and colon and testicular and other cancers and vice versa. Right?
Chris Riback: Yes.
Dr. Ann Partridge: And so that’s true from a biomedical standpoint, and it’s also true from the supportive care standpoint.
Chris Riback: So it’s important that I get to ask you about and get to learn about your research. You are launching two parallel studies that will build on prior research to improve the understanding of the complex medical and emotional problems that we’ve been talking about, the ones that face young women with breast cancer, with a new focus, as I understand it, on intervention and outreach. One of them is the “Young Women’s Breast Cancer Study Two.” And the other one I believe is titled the “Young Women’s Breast Cancer Study Two: Internet.” Tell me about each of them please.
Dr. Ann Partridge: Sure. And that has evolved. So I will say, just to clarify, we’ve kind of put them together.
Chris Riback: Ah, okay.
Dr. Ann Partridge: We’ve just completed a pilot where we have developed a web-based portal, as I alluded to earlier, that is designed to help women both report symptoms and problems and informational needs. And in the moment that they trigger and report a problem or an informational need, they are actually sent to their portal, information or support or how to manage that need or that concern or that symptom. So, it’s kind of real-time iterative supportive care. Again, you can sit on your couch at midnight and answer the survey that asks, “Do you have hot flashes?” or, “Are you worried about your sexual health?” or, “Are you’re worried about your pain or fatigue?” And if you say more than no, if you say a little or a lot, in different degrees, you will get information about how to manage that particular symptom that comes to you.
And if you don’t say anything, if you say, “I’m totally fine,” you’ll just get some supportive care things generally about what to think about and how to optimize your health behaviors and things like that. So you get something no matter what. And plus, we’re pulling people to come together to form a community within the portal. So it’s a way for other young women to connect with other young women as well as our team. And they can also do journaling because we know from other data that that can help young women to process and emotionally deal with a breast cancer diagnosis and survivorship.
So we just finished a pilot of the portal that the women can also track their symptoms over time and see if they’re improving. They can also, again, as I said, communicate with one another. And so we just finished this pilot, and it was very, very successful. Women were very engaged. We accrued women who had newly diagnosed breast cancer, age 45 and younger for this one because it’s supportive care, and women who are survivors, meaning out of initial disease treatment and kind of moving beyond. And then another group of women living with advanced breast cancer, living with metastatic disease. And we got feedback from these women. So not only did they respond to the surveys, but they also told us what they thought. We’re interviewing. We’re almost done with the interviews. And we’re interviewing them now. And we’re learning about the pros and the cons and the, “Was it wasn’t too much, or was it too little?” And, “What would help you engage more?” And this is the kind of research that you have to be very patient with because you want to hear all the criticisms, right?
Chris Riback: Mm-hmm (affirmative).
Dr. Ann Partridge: You want them to tell you what they liked, and what they didn’t, and have them be honest because you ultimately want a product that they’re going to engage with.
Chris Riback: Of course.
Dr. Ann Partridge: And so we are in the process of revising the portal right now based on that feedback. And then our next step is to launch three different initiatives, one for each of those groups that will use this web-based platform, that will now be tweaked for each of those groups. For example, in these survivors, the top symptoms weren’t nausea or vomiting. They were anxiety, hot flashes, sexual health, right?
Dr. Ann Partridge: And so we’re not going to ask them about nausea and vomiting very often, right? Because they don’t need that information. They’re too far out. And in the metastatic patients, that actually was true too. So we’re going to … We’re tweaking things, but we didn’t know that until we surveyed them and found out that, “Nobody’s really interested in this. And people are more interested in that.” And we also found out, interestingly, in the feedback, a high proportion of people were … When we talk about survivorship, we think a lot about the kind of system issues and the patient direct issues. And one of the things that we hadn’t thought about, which I’m embarrassed to say because now it’s like common sense, is they wanted more information and support about the financial toxicity. Right?
Dr. Ann Partridge: Of course it makes sense. And yet I hadn’t thought of it. It wasn’t in there as a … They didn’t trigger that because we didn’t ask them. We didn’t ask them. We ask them, “Tell us what else you’d like to see,” in an open forum, which this is one of the things they told us both then and in the interviews. So it’s pretty cool, right? This is why we pilot this, because you’ve got to learn from your patients what do you need to deliver better and what more. So, now we’re working on adding that as well and plugging in resources, which is just hard, but they’re out there. And some of this is about connecting patients with resources.
Chris Riback: Incredible how any of us, but in this particular case people like you and colleagues who do this, have done this every day for years, talk to patients every day for years, and yet still can learn new insights and gather new data and then refine your activities or opportunities for patients to more customize it, make it more relevant and make everything just more directly useful, and the continual learning that can occur really in just about any area in life is always fascinating. And I’m sure that’s one of your takeaways as well.
I’ve got to understand. And in listening to you, how did you get into this? And I mean going back, way back. Where did you grow up? For you, was it always science? Was it always research? Or were you just on the verge of becoming a world class Olympic athlete, and at the last minute you just said, “Nah. I’m not going to do that. I’m going to do science instead”?
Dr. Ann Partridge: So I was always going to be a doctor. In fact, I tried to talk myself out of it because my wonderful father is a physician. He’s now retired. So that was kind of in my blood for lots of reasons. And yet I kind of fell into breast cancer, to be very honest, not because I necessarily needed to do breast cancer, but because I found a mentor that was a breast cancer rock star, Eric Winer, when I was a fellow. I knew I wanted to attach my wagon to his star in terms of just … I wanted to be like him. And that’s the idea of a mentor. So, and I was happy to do breast cancer because I was interested in women’s health, and I liked the long term relationships. And I also liked the evolving science that I was seeing in the early fellowship oncology trenches. So that’s how I initially started with breast cancer.
I grew up on Long Island, by the way. I’m a New Yorker by birth, but then I came up to Boston for a man. But that being said … And for my Dana-Farber fellowship.
Dr. Ann Partridge: It was a good one. But really it was about my now husband. So, fast forward though. I’m in the oncology trenches. I’m trying to figure out what I want to do when I grow up in oncology. I start working with Eric Winer. And two things happened. One is that, in the clinic, because I’m a clinical doc. I’m not a test tube researcher. I started seeing in the clinics what I described to you earlier in this, the suffering of the youngest women. I started seeing … They were just pulling on everybody’s heart strings. And I felt like we could do more for them so, and we could learn more for them. And when they’d ask questions about, “How likely am I to go through menopause with this chemotherapy?” We didn’t have enough answers.
And so that’s where I found my niche clinically and thought, “Hey, this is an unanswered area. I could dive right in here because it’s both fascinating to me, and I could do good, and there’s room.” And so for me, that was kind of what hooked me. And then I will tell you, when I was about 29, and my best friend was 30, I got a call from her, my best friend from high school. She had a lump. She was in New York, actually. And fast forward. It ends up being breast cancer. And fortunately, her survival was actually not the thing we were worried about.
But I heard from her from the inside, from … She shared with me things you don’t share with your doctor typically, but what you share with your best friend, which is, “How do I deal with one breast, and the shirt I want to wear on Friday night?” I have this new partner. And how do I deal with that from an intimacy standpoint? Can I have a baby? Or is that not going to be safe?” And then we weren’t sure whether it was safe. Now we’re pretty sure that it is probably safe to have a baby after breast cancer based on available evidence. But at that time, we didn’t have enough data to even answer those questions, or enough resources to answer kind of the beauty and self-image stuff. And I heard from her kind of firsthand, how hard it was, even when it wasn’t about surviving the cancer. It was really about kind of moving on.
And so for me personally, that made me even that much more interested in the supportive care stuff, the softer stuff that the doctors and even the nurses, quite frankly, don’t pay that much attention to, and yet are so important for the day to day for our patients that we kind of should help them with this. And so we’ve tried to build ways to help them better, in partnership with other groups, with advocacy groups, and with duty groups, and with all kinds of good partnerships where we all want the same thing. We want people to look and feel good, right?
Dr. Ann Partridge: And so that’s kind of been an area … That’s where it came out of. That’s where … For me, it was, “Okay. This is a good fit for me, and my personality, and my mission.” And that’s how I’m here.
Chris Riback: That’s an incredible series of inputs in both the personal and the professional … Yes, I mean those conversations with your girlfriend. As well, I can say I had the great privilege of doing one of these conversations with Dr. Winer. And so, I get it. You were fortunate-
Dr. Ann Partridge: You met the rock star.
Chris Riback: I got to talk to the rock star, yes. So, yes, I get it. If you had the opportunity … If one had the opportunity to work with him, I can see how that could be life changing and could really help direct a career, which I am willing to bet you have either passed forward and passed on, or will. But my guess is you likely already have too many folks. So, thank you. Thank you for that. And thank you for taking the time with me today.
Dr. Ann Partridge: Oh, it was a treat. Thank you.
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