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In this episode, Dr. Diane Reidy-Lagunes sits down with Dr. Elizabeth Comen, author of “All in Her Head: The Truth and Lies Early Medicine Taught Us About Women’s Health and Why It Matters Today.” They discuss ways to empower women to advocate for their health when talking to doctors, and how a historic gender bias in medical research has influenced practices today. Tune in for an insightful conversation on tackling stigmas and reshaping the narrative around women’s health.
Listen to Episode 12: “A Woman’s Guide to Sex and Cancer”
Listen to Episode 30: “Achieving Excellent Healthcare for All: A Candid Conversation with MSK’s President & CEO, Dr. Selwyn Vickers”
Episode Highlights
Why is there a gap in women’s healthcare and what we know about female-specific diseases?
Women’s health was often overlooked and misunderstood in medicine due to a lack of inclusion in medical research. Until the 1990s, federally funded medical research primarily focused on studying men, leading to misconceptions and biases regarding women’s health concerns.
The exclusion of women from medical research has resulted in significant gaps in understanding female-specific diseases and the effects of treatments on women. For example, many clinical trials focused on cardiovascular disease included only men, leading to limited knowledge about how medications like aspirin and cholesterol-lowering drugs affect women.
The historical exclusion of women from medical research has profound implications for cancer research and treatment outcomes. Studies have shown that chemotherapy and immunotherapy toxicity are often greater in women, highlighting the need for more inclusive research practices to better understand treatment efficacy and side effects in both men and women.
What initiatives are underway to address gaps in women’s healthcare?
The White House Women’s Research Initiative, backed by President Biden’s $12 billion pledge, aims to close gaps in women’s healthcare. This initiative supports grants and collaborations across various sectors to improve understanding and address disparities in women’s health.
How can patients and doctors overcome the stigma surrounding women’s sexual health?
Stigma surrounding women’s sexual health stems from societal norms and historical attitudes toward women’s bodies and sexuality. This stigma can lead to discomfort and reluctance in discussing sexual health concerns openly with healthcare providers, perpetuating a cycle of silence and misinformation.
Patients can empower themselves by recognizing that discussing sexual health is a vital aspect of overall well-being and seeking out healthcare providers who prioritize open and non-judgmental communication.
Doctors can create a supportive environment by proactively addressing sexual health during medical visits, normalizing discussions, and actively listening to patients’ concerns without judgment.
By working together to break down barriers and challenge societal taboos, both patients and doctors can foster a culture of openness and understanding around women’s sexual health.
What is some advice for women speaking to their doctors?
- Find a doctor with whom you feel comfortable and empowered to discuss your health concerns openly. If you don’t like your doctor, find a new one.
- Bring a trusted companion to medical appointments for support and perspective, as you may be anxious or distracted.
- Prepare questions in advance.
- Ask for clarity about everyone’s roles on your healthcare team and who you should communicate with about different issues.
- Learn how to navigate access to your healthcare information under The Cures Act.
- Seek a second opinion if necessary.
- Advocate for yourself and address any concerns openly with your healthcare team. Speaking up about your symptoms and treatment preferences can lead to more personalized and effective care.
How can patients navigate the complexities of accessing healthcare information?
Patients should strive to gain an understanding off their rights under The Cures Act, which mandates the timely release of medical results. It’s essential for patients to communicate their preferences regarding the timing and format of receiving potentially sensitive medical information, and to involve trusted companions in these discussions for support and clarity.
How can healthcare institutions improve trust and access for minority populations?
Access to healthcare for minority populations is crucial for addressing health disparities and ensuring equitable outcomes for all individuals. Historical and systemic barriers have contributed to disparities in healthcare access and quality, leading to poorer health outcomes among minority communities.
Healthcare institutions can work to build trust with minority communities by actively engaging with diverse populations, understanding their unique needs and challenges, and addressing systemic issues that contribute to disparities. This includes promoting diversity and cultural competence within healthcare teams, providing culturally sensitive care, and actively involving community members in decision-making processes. By fostering trust and addressing barriers to access, healthcare institutions can better serve the needs of all patients, regardless of background or identity.
Show transcript
Dr. Diane Reidy-Lagunes:
Today on the pod, we are looking back at history to understand women's health, women's bodies and why for far too long, women were dismissed and shamed. It may be shocking to hear that it wasn't until the 1990s that the government mandated women be included in federally funded medical research. Before that, most of what we knew in medicine was based on studying men. As a result, much of women's health became dismissed often as psychological or emotional. While we've certainly seen a lot of change over the years, there's much more to be done. Let’s talk about it.
Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcast.
I am so honored to be joined by author and friend, the great Dr. Elizabeth Comen. Elizabeth is an oncologist who has dedicated her life and career to taking care of women with breast cancer. She has also majored in history of science and has a passion for understanding the context behind illnesses. Today she shares insights from her new, amazing yet shocking book, "All in Her Head: The Truth and Lies Early Medicine Taught Us About Women's Health and Why It Matters Today." It's a collective narrative of how women's health was historically treated: extrapolating from men's health without actually testing women. Equally important, it is the call to action to reframe the conversation around women's health and to understand why we can and should discuss our concerns openly and shamelessly with our healthcare team. Elizabeth, welcome to the show.
Dr. Elizabeth Comen:
Hi Diane. I'm so excited to be here with you.
Dr. Diane Reidy-Lagunes:
You are a breast oncologist, and you wrote this remarkable book. Why did you decide to do it?
Dr. Elizabeth Comen:
Going back in time, I've always been interested in the context of medicine, as you said, understanding that science and medicine does not get discovered. It does not happen in a vacuum, but it’s inextricably linked to culture, religion, society, and all these forces that we know are so important when the patient shows up in the doctor's office today. Now having cared for thousands of women and really been privy to heartbreaking stories unrelated to their cancer, in many instances, of being misdiagnosed, misunderstood, or simply apologizing excessively when they come to the doctor's office because they're sweating, they didn't shave their legs, they didn't have a pedicure. I'm giving these trivial examples, but we know they span from the small things to life-threatening. I’m really trying to understand and unpack that legacy that I believe shows up whether we're doctor or patient in the exam room.
Dr. Diane Reidy-Lagunes:
I think that was one of the most powerful parts to me. Like, why do we do that? We all do that, but there's a history behind why we feel like we have to say we're sorry that we didn't wax our legs when we go to the doctor's office.
Dr. Elizabeth Comen:
If we think about it, the idea of women apologizing and behaving is a societal thing, right? So we shouldn't be surprised that this infiltrates our approach to medicine. But yet, somehow there's this surprising thing when you take a step back, even as a physician: “Why are all of these women apologizing to me?” When you do a breast exam, a lot of times you have to put your hands over your head, and almost every woman will apologize to me, “I'm so sorry. I'm sweating. I'm having a hot flash.” It's unfortunate to say the least.
Dr. Diane Reidy-Lagunes:
As we alluded to earlier, it wasn't until 1993 that congress passed a law establishing guidelines to include women and underrepresented minorities into clinical research and trials. Elizabeth, what does that translate into in today's world, and what are we missing?
Dr. Elizabeth Comen:
Well, I think we still have so many gaps. There are female-specific diseases. There's female predominant diseases or diseases that are uniquely found in women. And yet, when you look at how we've been studied, so much of it has been done on this reference 70-kilogram white male. For many of the trials for cardiovascular disease, the landmark studies included tens of thousands of men and not a single woman to look at aspirin or cholesterol medications. And as you said, it was not until 1993 that any study that was done by the NIH was mandated to include minorities and women.
But the other thing is, because you and I have both been involved in medical science and medical research, it was not until 2016 that those same studies were required – if they included mouse models – to include female mice. And the idea was just like, “Oh my God, even these female mice are too hormonal, so we can't study them. So we'll have to study immunotherapies or these other medications or chemotherapies in male mice.”
This has had extraordinary consequences head to toe for women. If you look at chemotherapy toxicity, immunotherapy toxicity, it is greater in women. In a lot of instances, there's a lot that we don't understand because we've been predominantly looking at how it functions in male models, male-specific cells, or actually male human subjects.
Dr. Diane Reidy-Lagunes:
We would be remiss in not recognizing that this is not only an issue about women's health being dismissed. Back in 2022 for our 30th episode, I sat down with our president and CEO Dr. Selwyn Vickers, and we talked about a gap in trust between minority populations and healthcare institutions. Here's what he had to say.
Dr. Diane Reidy-Lagunes:
Dr. Vickers, can we talk about race, particularly as it relates to that trust in our healthcare system? How do we improve upon that trust?
Dr. Selwyn Vickers:
For many ways, no fault of our own, our lives as individuals, particularly Americans, are developed and formed, if you would, in incomplete narratives. The narrative that we know is typically our community, our race, our family. One of the ways I think we can begin to change is by completing the narrative of our lives as humans living in this country and on earth. And the completion of that narrative begins by getting to know and understand the life of someone who is very different than you, both in experience, both in skin color, both in activities and even professions.
We have to realize that the greatness of a place like MSK is to treat people from every spectrum of life and understand that if we do the hard work of getting the outcomes for those who are disparate, inherently we will improve the outcomes of those who've had the most. There's data to show that when you improve access for those who can't get in, guess what? For those who know the double secret handshake, they can get in easier as well! In fact, you make it better.
I think the large burden for American healthcare is to deal with health equity. It costs our country billions of dollars because we don't proactively deal with disease and cancer and screening in the lives of those who don't have access. We pay it on the back end for those who suffer because we didn't choose to deal with it upfront.
Dr. Elizabeth Comen:
Wow. Absolutely amazing. I just want to pick up on some really extraordinary things that he said. He talked about the narrative experience of medicine. So much of this book that I've written, and our care of patients, is understanding: what is the experience of illness? Two people can have the exact same diagnosis of breast cancer or any cancer, but how they experience it, how that relates to their background, their history, their lives, their family, their whole world could be two entirely different things. I truly believe, and the reason why I wanted to incorporate history into this book, is that every body that we're in has a history. That isn't just our race. That isn't just our religion. It is completely unique to ourselves and our life experience. The more we can access that and understand that, the better we provide care for ourselves and advocate for ourselves; plus the more, as physicians, we can really try to invite understanding the stories of the patients that come before us – not just how they survive, but how they thrive.
When it comes to minority communities, in writing this book, one of the things that shocked me was just how much there is horrific levels of racism and horrible mistreatment of minorities that becomes compounded when you're a woman. The idea that black women have a 40% increased mortality from breast cancer, not because they're presenting more with triple negative breast cancer – although there may be a slightly increased incidence of that – but because of access to resources. That's simply unacceptable. Or that so many minorities have their pain dismissed, or the assumption that they can handle pain better, still is a legacy that I think shows up in many medical practices today. We have to do a better job of truly listening to people of all backgrounds.
The other thing that I thought that was really interesting in what he said is he brought up the economics. One thing that has been shown, not just for minorities but for women as well: if you don't care about women's health because you just don't care, fine. But I bet you care about your wallet, and I bet you care about your workforce. And the reality is, when you invest in women's healthcare, it redounds to our economy. It is a no-brainer for us to invest in women's healthcare. Whether you care about us or not, it will affect you because we are the primary caregivers. We're the primary decision makers of healthcare. We are the predominant providers of healthcare and the predominant consumers. So when we are not well, our whole society is not well, and that includes economically.
Dr. Diane Reidy-Lagunes:
You’ve talked about the need for support at the federal level, and there’s a White House initiative going now that you’re a part of. Can you talk to us about that?
Dr. Elizabeth Comen:
So there's the Women's Research Initiative that came out of the White House, that came out of President Biden and Dr. Biden saying that there are these enormous gaps in our healthcare system with respect to women and men's healthcare. Now there is a massive initiative to close some of these gaps, and recently President Biden pledged $12 billion to help to do this. Now there are grants that people are applying for from all different aspects of the ecosystem of our healthcare world.
One of the things that I've learned from my interactions on this level is that it is going to take a village. It's not just siloed in academia. We need government funding. We need government support. We need a groundswell from society to say that women's health matters. We need private funding. We need philanthropic funding. And then of course we need institutions behind this work. We cannot do this without the support of academic institutions and making sure that there is energy and momentum behind caring for women.
Dr. Diane Reidy-Lagunes:
I do want to go back to something else that you write about in your book. We as docs have to nurture and understand the patient, and the focus we have on caring, compassion and empathy is so critically important but often overlooked and not really rewarded. You are one of those compassionate docs and I try to be the same, but can you talk about that and what you mean? Because both of us, I think, feel very strongly that we have to care for our patients of today and tomorrow, yet the idea of really talking to your patient, understanding that patient, and then being aware of things that maybe you're going to make the diagnosis – all because you took that little extra time – often goes unnoticed.
Dr. Elizabeth Comen:
Right. Diane, I have known you since residency when you were my chief resident – and I hope this does not get cut from the podcast – but you have been an extraordinary example from day one of the compassionate, empathic doctor who truly listens to patients. You and I both know that our healthcare system is deeply flawed and deeply imperfect. There are lots of pressures on us beyond the exam room, beyond that doctor-patient relationship, third-party players, insurance companies where we may have to spend hours arguing for an approved medication with a doctor that's never even met our patient. So the pressures are immense and it's very hard in many instances to access that, but you and I both know that the best care comes from when we have the time to listen to patients.
There is study after study that shows that women listen longer to our patients. But I want to be really clear, we also know that men can do this beautifully as well, but I think there's a historical legacy to the assumption that women are inherently more empathic. I don't think we're more empathic. I just think we've been told we are supposed to be, and therefore we lean into that kind of feminine spirit. But it doesn't have to be. I think we can really try at least 1% better every day or every year to encourage every physician to be valued for their compassion, to be valued for their empathy. So much of medicine now is billing codes and the bottom line, but the bottom line should always be patient-centered care and the challenges there in are quite complex.
Dr. Diane Reidy-Lagunes:
And you absolutely lead by that example, so I’m grateful for you for that. I also want to talk on another really important topic that you address, which is the shame women feel. As you said, in society we sort of normalized it. That shame and inability to speak the truth is because there's history that makes us feel that way. Can you talk to us a little bit more about that?
Dr. Elizabeth Comen:
I think there's a tremendous legacy of shame when it comes to women's bodies, particularly our sexual function. I know you've done podcasts in the past with some of our sexual health experts showing that we are two times more likely to ask men about sexual side effects from cancer-directed therapies. This is an extraordinary example of how this legacy of shame shows up, because I think doctors aren't as prepared.
I think patients also don't feel as comfortable talking about their bodies. There are aspects of genitalia in women that are literally Latin derived from the word “shame.” And there is so much of a legacy about an inability to advocate for our bodies – how they should behave, both in public and in private – and that unfortunately deeply infects the doctor-patient relationship and how women feel about their bodies, and what they feel that they can actually talk about.
Dr. Diane Reidy-Lagunes:
And that is episode 12, for anyone that wants to go back to listen to our “Women's Guide to Sex and Cancer.”
You’re giving your patients lifesaving treatments but often they do have these side effects that can be swept under the rug. Can you share with us as a breast oncologist how you address that, and the importance of having your patients speak up?
Dr. Elizabeth Comen:
I think one of the things I try to do is just put it out there so that we can normalize it. So in the breast cancer space, oftentimes for especially young women, we are putting them into chemical menopause. So we're either shutting down their ovarian function or giving them medications that decrease the amount of estrogen in their body. This can be sudden and dramatic. Or for postmenopausal women, we are making their menopausal symptoms worse. This can be joint aches, this can be vaginal dryness, this can be decreased libido, this can be mood changes, this can be fatigue, joint pain. All sorts of things can happen.
But specifically when it comes to sexual function, I think it's very important when we're describing these medications and describing the treatment to say, “This commonly can happen, or this may happen. If it does, rest assured I'm here for it. Talk to me. Let me know what's going on. There is nothing I haven't heard before. I am not embarrassed. Just try me.” And if you set that up ahead of time, I think it opens the dialogue for when a woman does have a complaint or does have a concern. Set it up to really normalize that these are tough experiences and that we are here for women. And as patients, have a little bit of faith that we went into medicine to care for you, and caring for you is caring for all of you. So give us a try and if you don't like your doctor, you've got to find a new one.
Dr. Diane Reidy-Lagunes:
Love that. Are you optimistic about where the ball's going? Do you think we are in a place where we have learned from that history and now we're going to move on?
Dr. Elizabeth Comen:
I hope so. I mean, this work's getting a lot of attention. The White House is interested, the public is interested, you're interested. So I think it really touched a chord that the title is "All in Her Head.” The number of people that have said to me, "I've been told something like that before," or "I'm just anxious," or "Just calm down," or "You'll be fine." It's unfortunate that the title resonates with so many women, but that it does tells us that there is a need for this. I am very much optimistic, and it isn't just coming from women, it's coming from lots of extraordinary men as well who have partnered in this work and are equally enthusiastic.
Dr. Diane Reidy-Lagunes:
What advice do you give to women to help them feel empowered over their health?
Dr. Elizabeth Comen:
This is a little provocative, but if you feel like your doctor doesn't like you or you don't like your doctor, it goes both ways. If you have that awkwardness, you’ve got to find another doctor.
The other thing I would say is if you're not comfortable advocating for yourself, particularly if you're anxious because it's really hard to absorb information when you're worried and you're anxious, you’ve got to bring somebody with you, a family member or a friend. Bring some questions so that you can have another set of eyes and ears to really listen and bounce back what you're hearing and so that you can feel more comfortable in the advice that you're getting. Somebody else can say, “Wait. slow down. I didn't hear that. Can you repeat that again? Let me follow up with another question.”
As you said, it's so important to know who's on your healthcare team. It's your doctor, it's your nurse, it's your nurse practitioner. Understanding who you should communicate to, and is it via portal message? Is it via a phone call? What is the best way?
The other really important thing is understanding The Cures Act, the idea that information can be readily available to you even faster than your doctor may have seen it. You may want to filter some of that and talk to your doctor about, “I want to wait for you to read my PET scan before I see it.” And unless you do that, it may come to your inbox.
Dr. Diane Reidy-Lagunes:
For those that may not be aware of The Cures Act, that is something that the federal government tells us that we are mandated to put every result on the portal immediately after it is resulted – a PET scan, a pathology result, surgical result – and often, it’s not necessarily written in English for the layperson to read, and it could be overwhelming. So I completely agree with you. Some patients feel that they really want to do that, and they really want to get the information as soon as possible, and that can be helpful and empowering, but it can be overwhelming. I think it's just something that you want to make sure you discuss with your doctor.
Elizabeth, thank you so much for joining us. As always, I learned a tremendous amount and I'm so proud of you.
Dr. Elizabeth Comen:
Thank you so much. And for all that you're doing, I really appreciate you.
Dr. Diane Reidy-Lagunes:
Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or just send us your questions, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing it on Apple Podcasts or wherever you listen. Any products mentioned on the show are not official endorsements by Memorial Sloan Kettering. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.
