What to Know Down Below™
Welcome to What to Know Down Below™ by Tina’s Wish! We’re here to empower you with the knowledge and tools you need to advocate for your own gynecologic health.
Knowledge is power, and we encourage everyone to join us in learning more about what you need to know, down below!
What to Know Down Below™
Disparities When It Comes To Gynecologic Cancers & How We Can Close the Gap
Disparities When It Comes To Gynecologic Cancers & How We Can Close the Gap
Featuring: Valerie Smaldone, Moderator, Media Personality, Radio Host & Ovarian Cancer Survivor
Carol Brown, MD; Gynecologic Surgeon, SVP & Chief Health Equity Officer, Memorial Sloan Kettering Cancer Center
Dineo Khabele, MD; Chief of Obstetrics & Gynecology, Washington University School of Medicine in St. Louis
To learn more about gynecologic health, visit tinaswish.org/whattoknow.
Welcome to What To Know Down Below by Tina's Wish. We're here to empower you with the knowledge and tools you need to advocate for your own gynecologic health. Knowledge is power, and we encourage everyone to join us in learning more about what you need to know down below.
Speaker 2:Hello, my name is Valerie Mone . I call myself a media personality, a radio host, actress, voice artist, talent coach, and producer. My radio show and podcast is called Bagels and Broadway, where I get to interview people from the world of entertainment and restaurants and food arts. And I also produce a podcast series on healing and wellbeing called Healing Wisdom. It's for the European Hospitality Group, healing Hotels of the world. And I'm a faculty member of the Arts College School of Visual Arts here in New York. But in addition to all of that, I am an ovarian cancer survivor as a very early stage ovarian cancer patient. Now, about 20 years ago, I became the poster child for early detection, experiencing this challenging medical condition. And along with my media background, I was able to become a health advocate for women speaking out about it, producing a public affairs series on radio and television , uh, doing fundraisers to raise money for ovarian cancer awareness and research, speaking at medical conferences around the world, and to small groups as well. And that is how I met one of the physicians joining us today. And I'll get to that story in just a little bit. But first, I wanna thank Tina's wish for inviting me to moderate today's panel, and I'm very excited to be here today. This is an inclusive journey, and we are so honored to have all of you here with us today. So now let's get right to our honored panelists. I'm so excited to introduce you to Dr. Carol Brown, gynecologic surgeon, senior Vice President and Chief Health Equity Officer at Memorial Sloan Kettering Cancer Center, and Dr. Deo Cabbel , chair of Obstetrics and Gynecology, a gynecologic oncologist at Washington University. Doctors. I'm thrilled to have both of you with us here today to have this wonderful conversation, this important conversation. And , and Dr. Brown, let me begin with you. But first I want to tell everybody how we met. And , uh, as you remember, it was , uh, an auspicious day in September. You and I were doing what is known as a press junket. We were talking about gynecologic Cancer Awareness month in September, and the date was September 11th, 2001. Dr. Brown we're forever bonded because of that experience. Yeah,
Speaker 3:It's so true. It's so true. Uh , we were actually doing a , uh, live , uh, radio broadcast at the time , uh, that , uh, the planes at the towers. And , uh, we will never forget that. And we are , uh, eternally bonded, but so happy to be with you , uh, here today. And wanna thank you for all the great , uh, work you've done then and since in , uh, increasing awareness for GYN cancers.
Speaker 2:Thank you, doctor. Thank you. Yeah, the world changed after that , but here we are so many years later doing such important work , uh, empowering women. So let's start Dr. Brown with the very first question as a recap, how would you describe gynecologic cancer? What is the definition of that?
Speaker 3:So, g gynecologic or GYN cancers are any cancer that affects the a woman's reproductive organs. So that includes cancer of the uterus or womb cancer of the ovaries, the fallopian tubes, the cervix, which is the tip or the mouth of the womb , um, the vagina and the vulva. So it's basically anything related to , uh, what some people call their lady parts or their female parts. Right .
Speaker 2:And of course, there is a web on this ASO that you can refer to on Tina's wish website. Let's talk specifically about disparities when it comes to gynecologic health and what kinds of disparities exist. Tell us about that.
Speaker 3:Well, when we talk about disparities, we're basically talking about differences. Um, and when we're talking about cancer, there can be disparities or differences, and they can be based on several different factors that each woman may bring to her cancer journey. It could be related to age, it could be related to the language that she speaks. It could be related to her , her socioeconomic status, her access to health insurance. It could be related to her race, to her ethnicity, to her culture, to her sexual orientation, or even to gender identity and physical ability. So these are some of the lenses or , um, things that might make each woman a unique person that can affect and result in differences in her cancer journey. And the measures, or the things that we look at that can be different include the rate at which , uh, a certain population gets cancer or the incidence of cancer. It includes , um, the risk of dying from cancer, which is the mortality rate, but it also includes , um, general outcome measures. Like how likely is a woman to survive for five years , uh, after being diagnosed with cancer. So basically, disparities or differences. And they can be , um, affected by a lot of different things that each woman brings to her cancer journey.
Speaker 2:Thank you , Dr. Brown . Dr . Kabel , welcome to the web series today . Um , can you speak more specifically and give some examples of the inequities in gynecologic cancers?
Speaker 4:Definitely. Well, first of all, thank you so much for inviting me to participate in this panel. I think it's just so important to raise awareness about gynecological cancers, and especially among women who sometimes don't have equal access to care, to treatment, to diagnosis. And specifically, we have a number of , uh, inequities related to race. Um, I'm gonna particularly focus on the differences , um, in race and ethnicity between black women and white women, where black women are more, more likely to die from cervical cancer, ovarian cancer, and uterine cancers. And , um, this is , uh, these are star statistics that occur primarily we believe due to inequities in our society that are limiting access to care and appropriate diagnosis and treatment.
Speaker 2:What are the possible solutions behind these disparities? Uh, and what are the causes too? Why does this exist? We've heard you talk about the tiers of racial inequity. What are they and what disparities exist therein?
Speaker 4:Well, I think that certainly as Dr. Brown mentioned, there are numerous factors that are related to what a patient , uh, factors related to a patient's identity, a patient's , um, access to care due to socioeconomic status. I think that we also have to look at , um, healthcare providers and physicians and nurses, and look at the fact that we really don't have enough diversity in our workforce to take care of the population that we're talking about. In addition, there's some deep-seated systemic issues related to racism and , um, and , uh, lack of access to economic progress in our country that are certainly affecting these , um, inequities and disparities. And I think one of the ways we deal with this is to recognize that this is a problem, raise awareness, and then really tackle the issues of workforce disparity, raising awareness about gynecological cancers that affect all women. And , um, and then tackling some of the systemic issues that we have in our society.
Speaker 2:Are there any other ways we can really decrease these disparities that are so common a , amongst our society?
Speaker 4:Well, certainly I think that , um, education is critical , um, raising awareness just as we're doing today. Um, certainly I, I think that people don't recognize that , um, we've made so much progress with clinical trials , uh, in gynecologic cancers and making sure that we , um, are , uh, uh, encouraging people to participate in trials and, and recognizing that as a positive and not a negative. I think it's important to , um, to make sure that , uh, people understand that economically we need to increase access to healthcare . Expanding Medicaid, for example, in the state of Missouri is an important way we're addressing inequities.
Speaker 2:I'm glad you brought up clinical trials. It's , it's such an important piece of the puzzle. So, Dr. Brown , uh, let's talk about how we can make this an effective way to reduce or eliminate disparities in cancer clinical trials. Let's, let's elaborate on that a little bit.
Speaker 3:So , uh, cancer clinical trials , uh, what we have found through our work here is at Sloan Kettering is that cancer clinical trials are really a great way and one strategy to work to eliminate , uh, cancer disparities, particularly those that are based or solely due to access to care. And here's why. Because when you participate in a cancer clinical trial, you are really guaranteed that you are going to get exceptional care. You're going to get access to the latest and best and most advanced treatments possible, and you're going to be monitored very closely, often more closely than you would be outside of a clinical trial. And this is going to ensure that some of the challenges that can happen , um, due to your socioeconomic status or due to your geographic location, et cetera, are really taken care of. Um, and I think it's important for, for patients with cancer and particularly women of color , um, and women from populations that may have some inherent mistrust of the medical system to understand that clinical trials nowadays, particularly cancer clinical trials, really do not , uh, involve being a Guinea pig. You , you're not gonna be in a trial where you're gonna be getting something that has absolutely no chance of working at all. For the vast majority of patients with cancer, you're usually gonna be getting something that is a super duper hyped up version of something that's known to, to work well, or you're gonna be getting something that's added to , um, a known , uh, way to attack cancer. So I think it's really, really important that people understand, particularly for cancer patients anyway, that nowadays clinical trials , um, really are not , are not focused on experimenting with things that we don't already know work. The other thing that's really important to re to realize is that in the last just five years, there's really been a revolution in clinical cancer clinical trials. They no longer take, you know, seven in eight years to finish. They no longer have to involve, you know, thousands and thousands of patients. In fact, the majority of the advances that have been made in therapies and, and actual cures for advanced ovarian cancer and uterine cancer and cervical cancer, three cancers, as Dr. Cabbel mentioned, have very significant lower five-year survivals for black women in the United States. Um, the, the majority of the advances that have come, have come through clinical trials that are what we call phase two trials. They're smaller, they're done more rapidly. They can be done in multiple sites at the same time, and many of them can be done in , uh, community oncology settings and don't necessarily require going to , um, a , a tertiary cancer center. Many of these trials involve targeted therapies or therapies that are taken by mouth and have fewer or very different side effects than the traditional chemotherapies. So it's a really exciting time actually to participate in clinical trials and for certain diseases, for example, endometrial cancer, where we know that black women with advanced endometrial cancer have significantly worse outcomes , uh, than white women. Um, you know, the recent approval of immunotherapy and targeted therapy, this, this happened because of women participating in clinical trials. So, you know, I really think that this is a , a way , uh, one strategy to approach it. Um, not the only one, but given the exciting advances that we're seeing in all three of the major , uh, gynecologic cancers just in the last few years with targeted therapy and immunotherapy, clinical trials are really important tool.
Speaker 2:Well, that's very compelling, what you just mentioned, but how do we get greater enrollment in clinical trials? How do we also get the word out to the community?
Speaker 3:Well, thank you for asking that question. Um, so the , the work that, that I've been doing here at Memorial Sloan Kettering and that many of my colleagues are doing , um, around the country, including Dr. Cabbel , uh, and others at other cancer centers, is recognizing the concept with act , which actually President Biden , um, had popularized during , uh, his cancer moonshot time in the White House, is that 70% of people in the United States receive their cancer care in a community setting. So if we want people to participate in clinical trials, and we want them to benefit from the great advances we have to take these advances from the places like Memorial Sloan Kettering and bring them to people in their communities. So , um, here at Sloan Kettering and many of , um, my colleagues here in New York City and elsewhere, and I believe also at Wash u, have formed partnerships with community oncologists and with people who are delivering care in the community, cancer care in the community to , uh, bring the clinical trials from the academic center to be done at the site, as well as partnering directly with , uh, pharmaceutical sponsors to do their trials in these community settings. So I think, you know, all of oncology is actually rapidly changing and people are getting their care where they live. So I think this is a really important way for us to adapt. Um, and it also breeds a lot of , uh, more trust , uh, in the system. Uh, and it really, it is an important , uh, way I think we can approach this.
Speaker 2:Well, you have a new role as Chief Health Equity Officer at Memorial Sloan Kettering Cancer Center. First of all, congratulations on that. Uh, what other ways are you and the institution attempting to address these health disparities? And you just mentioned something very important, some other ways, perhaps, that are in the works.
Speaker 3:So I think , um, as Dr. Gelli mentioned, the social determinants of health are really critical and being aware of them, but also doing something and offering some support and strategies to overcome some of the social de negatively affecting social determinants of health, such as , um, access to insurance coverage , um, access to transportation, access to food. Um, you know, we have a lot of , uh, our patients are food insecure. We've dis we've discovered just by asking them. And we have an amazing program run by Dr. Francesca Ganey of our cancer and immigrant health disparity service that has provided , uh, food banks at all of our sites for patients , um, so that when they come for treatment, they can also , um, get food from our food pantries.
Speaker 2:Thank you, Dr. Brown. So, Dr. Kabel , let's talk about some of the myths and stereotypes around gynecologic cancers in the African American community. Let's address them in then , let's clear them up.
Speaker 4:Well, thank you for that. And I just wanna , before I answer that directly, I wanted to follow up on what Dr. Brown said about trust. And I think one of the best ways to gain trust is to be more trustworthy. And so I think that the onus really is upon major academic medical centers and cancer centers like Memorial Sloan Kettering Cancer Center, the Siteman Cancer Center, which is here at Washington University in St. Louis to make ourselves more trustworthy. And this will allow us to get at the deep seated myths and stereotypes that exist not just in black communities, because there multiple communities, it's not just one. Uh , but also within the medical and scientific communities, for example , uh, there's a myth that the RCA mutations, which , uh, predispose women to developing breast and ovarian cancers are not common amongst African American women and black women. And we know women , that's not true. So , uh, genetic testing for these conditions and family histories and counseling are limited , um, uh, because we are believing this myth and stereotype, which is not true. Um, another myth is that black women are not willing to undergo treatment. And I think that that is absolutely not true. I think that we have to be more trustworthy in asking why people have reservations about particular types of treatment, but most people are willing to undergo treatment. And then finally, back to clinical trials, that black women are less likely to want to participate in clinical trials. And we know from the literature that if black women are asked in the right way, they are more than willing to participate in clinical trials. So those a few examples,
Speaker 2:And that's bringing us right back to the trust you just mentioned, Dr. Cabbel . Um, and, and the onus of the partnership between the patient and the medical staff. W would you agree with that?
Speaker 4:Absolute , absolutely. And it's beyond just the physicians, I think we need to look at nurses and schedulers and medical assistants, and it's the whole healthcare system that , um, that says, we are welcoming and we're willing to take care of anybody who comes through our doors, and you can trust us to help you through our journey. Um, and so I think that, that we are doing a lot of work here at Washington University at the Siteman Cancer Center. Dr. Brown, who is a mentor of mine for many, many years, has really led the field in this and is, is really showing the way and how we can address some of these, these deep-seated issues. And we have to, because I believe that if we can , um, address some of these issues, particularly for the most vulnerable, this is gonna help everybody.
Speaker 2:So, Dr. Brown, let's talk about some other communities and other myths. For example, in the Hispanic community when it comes to gynecologic cancers or age ageism. You know, a lot of people would say, oh, you know, ovarian cancer is only for older women or socioeconomic challenges, and I've given you three different areas. But if we can tease that out, that would be wonderful.
Speaker 3:Sure. I think it's important to recognize that for Hispanic and Latino, the Hispanic Latino community , um, there is very limited information about cancer disparities, particularly GYN cancer disparities. And the same is actually true for , uh, different populations , um, that are labeled and bunched together as Asian. Um, and again, to recognize that , uh, I appreciate that Dr. Uh , Cabela said communities, because there is not a Hispanic Latino community, there is not an Asian population. Um, we are understanding , um, more and more as we have scientists, and we have to remind ourselves race is not a scientific concept, it's a sociodemographic concept. Um, and so we need to actually be a lot more specific , um, in terms of what communities we're talking about and what groups of people. Um, I will say there has been some work , um, done , um, looking at Hispanic Latina , uh, women with endometrial cancer that has shown that they tend to get endometrial cancer at a younger age, a younger median age , um, than other groups. Uh, and I, we, we don't know for sure yet. But the concern is that , um, having it at a younger age, you're less likely to be diagnosed because the symptoms of abnormal bleeding are gonna not be taken as seriously if you're in your late thirties or early forties, as if you are older, if you're postmenopausal. So , um, really trying to understand the symptom pattern that women are presenting with and really trying to educate women that younger women can get endometrial cancer. And I think one of the, the greatest messages that we can bring to women is that, you know, your body, you know what you , if you're getting your menstrual cycle, you know what it's like, and you really need to feel empowered. You need to feel empowered that if you notice a change, that you bring it to your doctor's or your nurse practitioner's attention, and that you really, you know, if you're over 35, you really need to challenge them to make sure that there's not a possibility that this could be some type of cancer or pre-cancer going on , um, in your uterus. And that's really kind of a radical concept, because as Dr. Cabal , I nicely pointed out, I am many, many years older than her, and I've been around, I'm just kidding. And I've been around since, in my training, we were taught that only elderly women over 70 who were obese got endometrial cancer. Well, that's not true at all anymore . So, but unfortunately, I think many providers still have that in their heads. And so when someone who's 40 or 41 comes in and says, you know, my last two periods have been really heavy and I had some bleeding in between, you know, women, you need to have that message that maybe you should have a biopsy, maybe you should have an ultrasound and not just have it dismissed as , um, oh, you know, it's, you know, it's nothing, particularly if you are a woman of color. And that's the message that we wanna send because we, we do have information that's suggesting you are at higher risk. Also, if you have a family history of colon cancer, of breast cancer, uterine cancer, bladder cancer, you could have coming from a Lynch , uh, syndrome family. So again, you would be at increased risk for uterine cancer. So I think it's important to recognize that just as we didn't discover that black women had significantly or similar rates of BRCA mutations , um, until we started looking and doing the testing, I think the same thing is gonna be true. And again, to remember that many of these disparities are caused by the interactions of social determinants of health , um, and not really related to the color of your skin, the amount of melan in your skin, what language you speak, et cetera. Um, with regard to age, it's been a long known , uh, fact that , uh, women who are older , um, have , uh, worse outcomes , uh, particularly in ovarian cancer. However, there is really good news because this has been known for , uh, really about two or three decades. And many of the research organizations including , um, the NRG Gynecologic Oncology Group , um, uh, SGO ASCO have developed clinical trials specifically to be done in older women with ovarian cancer that have identified the better , um, types of , uh, drugs to use that have less side effects , uh, and also , uh, how to safely use targeted therapy in this population. So I, I do think that this age , um, uh, poor survival in older women with ovarian cancer, we're gonna start seeing that gap narrowed, which is really good news. Um, and then I forgot what the other, your third question was, sorry.
Speaker 2:The socioeconomic
Speaker 3:Disparities. Oh, well, again, I think, you know, we've already mentioned, so , um, social determinants of health and socioeconomic status as a reflection of that is really in , in my opinion, the critical factor that , uh, affects all people with cancer, and that can really , uh, result in them having a worse outcome. Um, and, you know, you asked earlier what we could do. Well , what we could do is , uh, as a country , uh, is develop a policy that makes sure that every cancer patient , um, has guaranteed access to care and doesn't have to worry about whether their insurance is gonna cover them having cancer surgery, or whether their insurance is going to cover them going on , uh, this new targeted therapy that their doctor is prescribing. And this really goes across socioeconomic status. It's not just , um, patients who have no insurance. This is a huge problem for everyone in this country. And I think that time is now, I don't , I don't think that the country is ready for , uh, Medicare for all, but I think we are ready for cancer care for all, in my opinion. And I think that's something that , um, we should really start from a policy front , uh, aggressively working on.
Speaker 2:We're gonna take questions from our audience in just a minute, but first, just very quickly, Dr. Cabbel , we are talking about age, and I'm curious to know if you can share perhaps the youngest , uh, gynecologic , uh, cancer patient that you have met , uh, in , in your career.
Speaker 4:Well, I mean, they're very rare gynecologic cancers that affect babies that, that affect , uh, children. And so I've had patients as young as two years old , uh, but those are really rare. Very, very rare. But there are other types of gynecologic cancers that affect reproductive age women that are, that less common types of ovarian cancer, for example. And so I think that that's , um, that's something that people have to be aware of, and that's why raising awareness about symptoms , uh, you know , uh, persistent symptoms, abnormal vaginal bleeding , uh, bloating, unexpected weight gain or weight loss , um, uh, feeling full early after eating , uh, bleeding in between periods, bleeding with sex. I think that these are symptoms that we just need to over and over again, remind people major changes in your bowel or bladder habits that persist to get those symptoms worked up , and make sure that included in that workup is , uh, a visit to the gynecologist so that we can make sure that we're not missing a gynecologic cancer .
Speaker 2:Always important to remind people how important it is to have those visits. Okay. Let's go to some questions from the audience. And we know we'll not be able to answer all the questions that we're receiving , uh, but like we did last month, we will provide replies to each question on our website and in our follow up e-blast. So thank you very much for participating. The first question , uh, in your opinions, do you feel that these inequities or disparities are improving, given the spotlight that has been shown on them throughout the past year? And it's always nice to know, should we be feeling hopeful? I'll start with you, Dr. Kelli .
Speaker 4:Um, so I think that it's very important that there's been a spotlight. Um, uh, but yesterday I was looking at some statistics where things are not getting better. Uh , the number of , uh, as far as our workforce, the number of black men going into medicine is lower now than it was in 1978. Uh, there are only 307 black women professors in medical schools out of 38,000 plus. So we have a long way to go. So I'm very encouraged that there's a spotlight. Um, but , uh, I think that we need a lot more action. Um, I think that a lot of our patients are being left behind because people are not listening. So the spotlight is raising awareness and making sure that people are hearing, but I think we need to really listen , um, because women are telling people about their symptoms. Women are saying that they've been bloated, that they're gaining weight, and they're being sent to a variety of different doctors and not getting an early diagnosis. So I am hopeful that we can keep the pressure on so that we can actually move from awareness to action. And , um, I , and I'm happy to be a part of that.
Speaker 2:Dr. Brown, are there any specific actions that patients should be taking? We're talking about the relationship between patients and medical community. What should patients be doing?
Speaker 3:It's very important not to let your fear of getting COVID keep you from getting your checkups, your procedures, if they are available to you. And as, as Dr. Gelli mentioned, it's not available to everyone because covid is affecting different areas differently. But if you are in an area that you can get to your providers for your routine screenings, for your checkups, for your blood pressure check, please don't be afraid to do it because of covid. Um, because again, I think we're gonna be seeing the residual of the pandemic in the next couple of years, that more patients are gonna be sicker with more advanced cancers.
Speaker 2:Very important point. Thank you for that Dr. Brown. And last question, Dr. Kabel , we've mentioned disparities today. What is the most challenging to eliminate and why?
Speaker 4:I I think we, we have large inequities and disparities in trust, and that is the most challenging. Um, and that relates to awareness, that relates to the ability to listen and to understand , um, other people's plight. I think the biggest , uh, challenge in our country is , uh, relates to that, but more importantly relates to underlying systemic issues that if we don't start , um, really tackling them from a policy and from a national level, they're going to persist. And , um, and so I think that that's, that's the thing that I struggle with the most. And I think that that's our biggest challenge. Um , but I am so encouraged and so, so grateful that we've had the opportunity to talk about these issues today , um, in this public forum. And , um, and I'm hoping it'll make a difference for somebody. Thank you.
Speaker 2:Well, a huge thank you to you , both colleagues and friends, Dr. Brown, Dr. Cabbel , we so appreciate your time and all that you do to improve the lives of women in relation to their gynecologic health. And also a big thank you to you who've tuned in. Thank you all so very much. I'm Valerie Mone . Be well.
Speaker 1:For more information about gynecologic health, visit tina's wish.org/what to know . That's tina's wish.org/w H-A-T-T-O-K-N oow . And like, follow or subscribe wherever you listen to your favorite podcasts.