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™
Ovarian Cancer: Facts & Figures
Hosted by Actress, Doula & Women's Health Advocate, Rachel Nicks, featuring Dr. Bhavana Pothuri from NYU Langone Perlmutter Cancer Center and Dr. Leslie Randall from VCU Health.
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:Hi everyone. My name is Rachel Nicks , and I am an actress, fierce women's advocate, mirror trainer, doula, and Lululemon Ambassador Tina's Wish funds cutting edge research for the early detection and prevention of ovarian cancer. Throughout this program, you will learn more about why this work is so critical. This is an inclusive journey, and we are honored to have all of you here with us. Now, I am so pleased to welcome and introduce our panelists, Dr. Bana Peti , a gynecologic oncologist, NYU Langone's, Pearl Mutter Cancer Center, and Dr. Leslie Randall , a gynecologic oncologist at VCU Health. I am so excited to be here with both of you. Let's get started in honor of celebrating ovarian Cancer Awareness month this month. Can you please explain to our audience why it has been so important that we have this conversation? Dr. Randall?
Speaker 3:Thanks, Rachel. I'm so glad to have this conversation. It's important to talk about it because people don't talk about it, right? You don't really hear ovarian cancer come up in everyday language. You see breast cancer all over the place. You see pink ribbons all over , uh, but you just don't really hear much about ovarian cancer, and that's because luckily it's fairly rare in United States, but it's still common enough and serious enough , um, that it's great that we're talking about it today.
Speaker 2:All right , Dr. Pori , let's start with you. If you could cover , um, some key statistics around ovarian cancer,
Speaker 4:Ovarian cancer, there are about 20,000 new cases of ovarian cancer estimated in the United States in the year 2022. Um, there are about 13,000 estimated deaths from ovarian cancer. Um, and, you know, ovarian cancer has actually accounted for the majority of gynecologic cancer deaths , um, representing over 50%. Um, but we are , um, seeing that endometrial cancer mortality is now kind of creeping up and kind of almost equaling that of ovarian cancer. But historically, ovarian cancer has been , um, you know, what we've termed as kind of the deadliest gynecologic cancer. Um, and the majority of women are, the majority of our patients are diagnosed at a late stage. Um, and that's stage three or four. Um, and typically five year survival rates are around 50%.
Speaker 2:And just so that we're all clear , um, does an early detection screening tests exist for ovarian cancer in the way that it exists for cancer such as breast and cervical?
Speaker 4:Rachel, that's a great question. Um, so, you know, unlike, you know, breast cancer where we have mammograms and cervical cancer, where we have a , a pap smear or HPV now, which is replacing of the pap smear , um, we don't have anything very specific, you know, that has been proven , um, to reduce , um, your detection of early stage disease. And, you know, ultimately the goal is to reduce your risk of dying from the disease, like for any good screening strategy, right? And we don't really have that in ovarian cancer. And so we actually do not recommend that, you know, the general population get screening , um, with ultrasounds or even , um, a blood test called a CA 1 25 . And you know, the reason for that is we've, you know, you know, studies have shown that, you know, doing these tests actually , um, you know, may , um, cause harm and that you may undergo unnecessary surgeries.
Speaker 2:Um, where do we think the disease originates and why is it so difficult to detect?
Speaker 4:Yeah, that's a great question, Rachel. So , um, you know, we actually think that , um, ovarian cancer originates in the fallopian tubes. Um, and you know, and that's one of the reasons why we advocate for removal of your fallopian tubes in women who are undergoing hysterectomy , um, or needing surgical sterilization. Um, and the reason that, you know, it's so difficult to detect is that we don't have effective screening methods , uh, to detect ovarian cancer. And, you know, although we have ultrasounds and , you know, ca 1 25 , um, you know, the prevalence of ovarian cancer is low. And so when you look at these screening tests, we have not , um, found them to be effective , um, in, in diagnosing , uh, ovarian cancer at an early stage, which is what you want , um, for a screening test. Um, and the other reason that it's so difficult to detect is the symptoms are extremely vague. Um, and so by the time , um, a patient recognizes the symptoms, they're usually , um, uh, you know, at a more advanced stage.
Speaker 2:Great. Thank you so much. So, Dr. Randall, what are the symptoms of ovarian cancer and what should we do if we are experiencing these symptoms?
Speaker 3:Well, it , thanks for that question, Rachel. It's really important to know the symptoms, but like Dr. Pari mentioned, unfortunately many women are not symptomatic until , um, things are getting into a more advanced stage. So that makes knowing the symptoms all the more important because the sooner you can report those to your doctor , um, the better. Um, so most of the, the symptoms are abdominal , um, and they include bloating or , um, distension or swelling of the abdomen. Um, one very specific symptom , um, is that patients will notice they feel full soon after they start eating. Um, and that's not normal. I mean, I don't know about you. I love to eat, so it's very hard for me to stop eating. And then the patients will notice, you know, if I take two bites and I'm full and I don't want any more to eat, then, then that's definitely a red flag. And I think the difficulty of these symptoms, bloating, distension, they can be caused by other things. Um, things that are not ovarian cancer related at all. And so oftentimes when you go to the physician and you mention these symptoms , um, they may try some things that have nothing to do with cancer. They may try you on medications that are for indigestion , um, or they may wait to do any sort of imaging, but the key to these symptoms is that they're persistent. Um, they're not gonna go away. They get worse over time instead of better, they don't respond to any of these , um, any of these treatments. So I have a lot of , I've been in practice for a long time, have a lot of patients who will say, oh, I went to my doctor and I said I had these symptoms, but they gave me an acid and told me to go away. Well, it was okay to give you an, an acid , but when it didn't help or didn't, then you have to follow up and you have to go back. And if they are persistent symptoms, then you need to , um, stay on top of that. And if your doctor won't look into your symptoms further, then maybe get a second opinion.
Speaker 2:Yeah, I think I just personally think it's important that we highlight that, especially as women just ask, trusting your gut. I mean, I'm no doctor, but really trusting in knowing your body because only you know your body. Um, so, you know, I I , I agree with that a hundred percent. And, and I think just not being a doctor, the whole white coat syndrome, you , we feel that perhaps if you tell me I'm fine, then I should believe that. But I , I , I would hope you guys can encourage whoever's listening that yes, you are doctors and you went to school for a very long time and know a lot of things and , um, people should trust their instinct. With that said, are all ovarian cancers the same ? Um, uh, and if not, what are the different types?
Speaker 3:That's another great question. You know, there , um, actually there are a lot of different types of ovarian cancer. And when you google ovarian cancer, typically you get information about the most common type, which is the epithelial type. It's the type that , um, Dr. Peti was speaking of. Um, and that's certainly what we spend most of our time taking care of. Uh , but there are some more rare tumor types and , um, they include , um, tumors, like they're called germ cell tumors , um, that can actually a arise in young women. Um, these act typically come up in one ovary. They're often curable. So when you google ovarian cancer and read these statistics , um, they don't apply to every type. So germ cell tumors are one of those types that is potentially curable and not necessarily the deadliest , um, gynecologic cancer, there's a , another type called a sex cord stromal tumor, which additionally is much more treatable , um, in general than the more common , um, ovarian cancer types . So there definitely are different types. The prognosis and treatment is like highly dependent on which type that you have.
Speaker 2:Amazing, thank you. And are there ways to reduce your risk of developing ovarian cancer? If can , you can do that one too , and then I'll pass it to Dr. Pari .
Speaker 3:That's great. There are absolutely are risks or ways to reduce your risk . So , um, number one, I, for me, the number one way to reduce your risk is that we know that about a quarter of ovarian cancers are hereditary. So know your family history and know if you're at risk for inherited ovarian cancer. And if you have a family history that does have breast cancer, ovarian cancer, prostate, pancreatic , um, cancer that you're tested for the BRCA gene . Um, if you have a family history that suggestive of uterine cancer, colon cancer, ovarian cancer, or urinary tract cancers, that could be something called lynch syndrome. If you don't know, and like this is overwhelming amount of information, and, but you do know that you have a family history of cancer, that's all you need to know to go to your doctor to see if you qualify for genetic testing. Uh, if you do test positive, you may be an , uh, candidate for risk reducing surgeries. That's probably the most effective way to reduce the risk after that. Um, patients who have used , um, oral contraceptive birth control have a very reduced risk of ovarian cancer. Um, we know that , um, 10 years of risk can reduce, or 10 years of use can reduce your risk by up to 90%. And that reduction lasts a lifetime. It doesn't just happen while you're on , um, the birth control pill. It can persist on, on in life.
Speaker 2:Amazing. Thank you. That's good to know . So , um, let's see. Um, I'm gonna give you this, Dr. Ari , can you explain the value of seeing a gynecologic oncologist specifically after an ovarian cancer diagnosis?
Speaker 4:I think it's really important , um, to seek care from a , um, a specialist in GYN oncology. And that's because we spend additional years training just to take care of this disease. And there are studies that have shown that women who are treated at a tertiary care center, meaning a center where there are specialists who can , um, who know about ovarian cancer , um, actually have better outcomes, meaning that they live longer. So , um, it's really , uh, a no brainer that, you know, any woman who is diagnosed with ovarian cancer, and even if they're diagnosed with ovarian cancer and they're not gonna have surgery immediately, they should see a gynecologic oncologist before they even proceed with , um, neoadjuvant chemotherapy if they're seeing a medical oncologist. You know, and it's something that, you know, you can talk to your doctor about and say, Hey, you know, can I see a GYN oncologist to make sure that I don't need surgery first? Um, and those are actually part of the , um, ASCO recommendations , um, when you're diagnosed with ovarian cancer. So it's , um, as I said, it's really critical to seek the opinion of a GY oncologist , um, because your outcomes are better.
Speaker 2:Right. And , uh, Dr. Randall, I guess, what qualities would you look for in a gynecologic oncologist?
Speaker 3:Well, I mean, everyone wants a nice per , you know, a nice per approachable friendly doctor about , I'll tell you for this, especially, like you really need someone who's skilled , um, you need someone with training and experience, just like Dr. Pari mentioned , um, it is , uh, a game changer to have a doctor who is skilled in this. It's not a common disease, thankfully. And so if you don't specialize in it, you just can't get really good at it. Um, IGY oncology is so great because we, most of us, or many of us, provide both surgical and chemotherapy care to our patients. And so sometimes, you know, one is better than the other, and sometimes a combination of the two are important. And if you do both, I think personally and, and we have great medical oncologists that take care of ovarian cancer, but if you are able to provide both, I feel like you're less biased as to which a patient should get. And you're very, it helps you become very, very patient , um, focused . But I , I think the number one quality is skill. And, but you do want your doctor to be very approachable. These are shared decisions. There are multiple options. You know, one option may be right for you or you may have a barrier to treatment that you need to be able to share with your physician and feel heard and seen so that you can address that barrier so that you can get the best care. So I think, you know, it's really important to have an a well-rounded physician.
Speaker 2:So I would just love for either of you to, to suggest where, number one, to find a gynecologic oncologist, and two, how do we decipher if they're skilled to support us on this journey?
Speaker 4:Yeah, I think that's a great question, Rachel. And really, you know , um, really important, right? You're, you're given this diagnosis, it's so super scary, you don't know where to go. Um, so my advice, you know, is to look for an NCI designated cancer center, and you can just Google that. Um, and most NCI designated cancer centers have, you know, experts. So, and then you can find a gynecologic , um, oncologist in one of those centers that's close to your home. Um, and the other thing that these centers, you know, offer , um, are access to clinical trials, which, you know, are super important in terms of providing , um, you know , uh, you know, cutting edge care , um, in terms of ovarian cancer. So , um, you know, having these at your fingertips is really important. Um, and so if you can really, I , you know, locate one of these centers that's close to your home , um, that's what I would recommend. Dr. Randall, do you have other , um, thoughts as well?
Speaker 3:Yeah, I, you know, I agree with you. I think the NCI centers are the best place to start , um, because of the expertise, because of the clinical trials for sure. Um, there are centers outside of the NCI designated centers that do provide , um, ovarian cancer care. I think having, again, it's just going right back to that question that you asked before, Rachel, that gynecologic oncologist, having that person as you know, the quarterback on your team , um, is really important. And so sometimes you can find , um, a GYN oncologist outside of NCI , um, designated centers. I think that's like the very best place to start. Um, patients are getting more and more savvy, like they're able to look for these, you know, where can I get a , where can I go on a clinical trial? Where are these NCI centers? I think patients are becoming much more savvy at finding these patients are, you know, organizing. There are , um, different ovarian cancer websites . Um, Tina's Wish is one of those , um, the Society for Gynecologic Oncology or the SGO has a website that lists providers and patient you can search by your area. Um, so it can be a little bit overwhelming too, that internet, right? Because you get some bad information with the good. Um, but , um, I think that NCI centers, GYN oncologist , um, clinical trials, focusing on those capabilities is the best way to pick the site for you.
Speaker 2:And , um, a thought that came to me too , um, I'm sure there are stigmas related to clinical trials, if I'm honest, as , um, African American person knowing that black people's bodies were tested on in this country. There's an aversion to that. So if you could just cover , um, you know, your point of view, and I know Dr. Peturi , you are a medical director in the clinical trials office at NYU, Pearl Mater Cancer Center, and the director of diversity and Health equity for clinical trials, which is important for people to know as a person of color , um, and at the Gynecological Gynecologic Oncology Group Foundation. So , um, if you guys can just kind of speak to maybe possibly the stigma around clinical trials so that people hearing this can feel safe to enter them, or if there's , um, you know , or some are better than others or, or how they would feel comfortable , um,
Speaker 4:Joining. Yeah, Rachel, that's like, so like, near and dear to my heart, so Me too. That whole question. Yeah. And , um, I mean, I , I just wanna start by, you know, just, you know, breaking it down, why, like, why participate in a clinical trial? Right ? Um, well, you know, two things. One, it gives patients access to novel therapies that have not, you know, that they couldn't otherwise get. And it gives pe , it gives patients hope. Um, so, you know, having the ability to participate in a trial, it , it , it becomes , um, it almost is an honor because you, not only are you getting something out of it by having access to these novel therapies, but you're contributing to the knowledge where, you know, thousands and, you know, hundreds of thousands of other women may benefit from these findings. Um, so, you know, and, and, you know, and I just , um, and I know there's a lot of stigma associated with it, you know, given Tuskegee and, you know, what has happened in the past, but I just wanna highlight that, you know, I, we've come a long way , um, since those times and, you know, clinical trials , um, are, you know, so , um, scrutinized where patient safety is of utmost importance. Um, and, you know, everything we do , um, for patients on a clinical trial is always, you know, making sure the patient is safe. So , um, I think, you know, we need to continue, we need to educate our patients about this mm-hmm <affirmative> . Um, and, and I just wanna share just like a small, you know, kind of , um, you know, experience , um, given that , um, I am at NYU , um, and we actually partner with Bellevue Hospital, which is the oldest , um, um, public hospital in the country. Um, and what we did was we partnered with a dedicated navigator there, and what we were able to do, and that navigator screened for us. Um, so they would screen the charts from the computer, never having seen the patient, and they would identify patients and they would send them to the clinical team, and then we would approach patients with clinical trials. And by doing that, what we did was we increased our screening by two and a half fold , and we increased our clinical trial accrual by threefold. Um, and that was just over a six month period. And then what we found that was most interesting was that all the patients that we accrued to clinical trial were of diverse races and ethnicities. And so by instituting this, you know , um, screener, we took away any physician bias. So, you know, just like the patients have their own bias and stigma, physicians have their own bias and stigmas, you know, thinking that, oh, this patient, you know, will not be able to come in for all the trial visits, or they're, they're not gonna wanna participate in a clinical trial, and the physician doesn't even offer the patient the clinical trial. Right? And, and studies have actually shown that when we offer patients clinical trials, and we, you know, we give them the explanation of why it's important and how we are gonna change the way we treat ovarian cancer , um, by, by participating in these clinical trials and how we bring new medicines , um, to our patients, you know, and, and , and the benefit to the patient themself of, of being able to , um, have access to these cutting edge therapies, we find that most patients actually wanna participate. Um, so, you know, so it's kind of on both ends that we see these , um, stigmas and biases. Um, so, you know, I just wanted to share that because we've actually shown that this , um, you know, these kind of interventions are important. And then you bring up a really important, you know, point that it's also important to have people on your teams that look like you, you know, have people of color, you know, to explain these things. Um, have, you know, there needs to be some shared experience that , um, you know, people can connect to, to really , um, understand that these trials are, are safe and they are in the best interest of the patient. Um, so these are all kind of, you know , um, initiatives that, you know , I am trying to spearhead both , um, at NYU, but also nationally , um, with the new hat that , uh, I'm wearing , um, in terms of the , um, you know, director for , um, diversity and health equity for clinical trials. Um, and I know that Dr. Randall is also , um, super passionate about this. And , um, she's also at a center , um, where , um, this is , uh, prioritized. So I would love to kind of also hear her perspective.
Speaker 3:Yeah, thanks Bob . And I couldn't agree more with everything that you said. And, you know, I actually , um, came to , um, Virginia Commonwealth University or VCU in Richmond, Virginia , um, as a person trained to do clinical trials as an investigator who noticed the terrible disparity that we have in our clinical trial enrollment and how it was getting worse. And, and you mentioned African American, Rachel, for our black patients , um, it used to be that we would enroll about 10 to 15% of patients on any given clinical trial for cancer would be black . And if , and that rate has gone down to about 5%. And the reason that that's bad is because , um, we're developing all these new, you know, amazing treatments and these patients are being left behind, they're being left out, and they're missing out. They're missing out on a lot of things. They're missing out on getting tomorrow's treatment today, just like Dr. Pati mentioned, but they're also not being counted. So when this, say this drug that was only tested in one type of person, ba basically affluent white patients, not rural white patients, not black, not necessarily Asian, when, and different, you know, different types of Asian ethnicities, that drug gets approved. It may not work for everyone. It may have different side effects for different groups. And so we're not gonna pick that up in our clinical trials if we only enroll one type of patient. And so then that drug gets put out, and then that becomes the standard of care. And then, then we start doing a clinical clinical trial, meaning I start just using it in my office, but it's not really well tested in that, in that specific group. You don't , sometimes we don't really know what to expect. And so, really, to be honest, like, I hate the term clinical trial 'cause it sounds so scary, it sounds so experimental. Like, it , it , it really sounds like you're gonna hook some up to electrodes or, I just hate the , the term because it's, it's intimidating. But every time we give a patient a cancer treatment, truly it's a clinical trial. We don't know if it's gonna help 'em , we don't know what kind of side effects they're going to have and whether, you know, all only difference is how much prior information that we have, but we may not, even when we're talking about diverse populations, we may not even have that information available for those patient groups. So that's where it becomes really important. So to me, it's an injustice not to be on a trial.
Speaker 2:And I think the last thought I had in, in this , uh, on this topic would be, you know, what if you aren't in New York City or you're not in San Francisco, or you know, some big coastal city that has all of these resources , um, you know, what do those people do? And more specifically, if you find out about a trial that's not located near you, is there funding to, to have them come be a part of that trial? Wherever that trial exists,
Speaker 3:Thanks to Dr. Pet , there's funding
Speaker 2:<laugh>, because I'm sure you, you're a lot of people, to your point of anywhere from rural, white to black, to just, you know, I'm in Green Bay or wherever, maybe Green Bay has an amazing cancer center, I don't know about. But , um, you know, as, as city dwellers we get , we're we , uh, lose sight of, of our privilege to have access across the board. Um, so I would just like to inject hope and opportunity for those people that don't, can't attend NYU down the street from them , you know?
Speaker 4:Yeah, no, that's a really important and great point, Rachel. And you know, I think one of the easiest ways to know , um, what trials are open or available, you know, clinical trials.gov and, you know, patients can search that as well as physicians. So that's a really, you know , um, simple way. And then once you, you can put in your disease site and , um, and then options for different trials will pop up and you can put in your location. So , um, 'cause all the trials that are open are listed on that, and so you will be able to identify a trial that , um, and then once you've identified that you reach out to the, you reach out to that institution and say, Hey, I'm interested. Um, 'cause there usually will be a contact number and, and then they will , um, help guide you.
Speaker 2:Well , um, before we close, is there anything else that has come up that either of you wanna share , um, with our audience , um, or closing thoughts? Dr. Randall,
Speaker 3:I just wanna thank you, Rachel, for bringing this up to light and having this conversation. You know, here, we thank , uh, Tina's Wish Foundation for carrying on this conversation. You know, if this doesn't reach the people that, that need to hear the message, then what we do is not quite as effective or as important, right ? So thank you so much.
Speaker 2:Thank you. And Dr. Ur ,
Speaker 4:I would like to echo everything. Um, Dr. Vandal said, yeah, thank you for allowing us to, you know, voice what we do and, and educate and, and really empower all our patients. Um, and I just wanna say that, you know, it's a really exciting time to be in GYN oncology. Um, you know, there in , you know, just in , um, ovarian cancer, there have been, you know, 14 new drug approvals , um, you know, over the past decade. And, you know, that's more than in the past 60 years. So there is definite, you know, hope we are making progress. Um, we know , um, patients are living longer with ovarian cancer. Um, you know, because we do see the prevalence going up and that's really because, you know, patients are living longer. Um, so , um, you know,
Speaker 3:But the incidence is going down and I think that we're starting to see some effects of our prevention. Yes. Um , with our removal of the fallopian tubes, like you talked about, removing the ovaries and our, our , our , uh, genetic risk patients. Like, I think we're starting to see an impact there. So that's really exciting.
Speaker 4:And I want everyone to, you know, advocate for themselves. You know, listen to your bodies, as you said. Um, I always say, you know, you have to be your strongest advocate.
Speaker 2:After hearing from Doctors p and Randall, I am even more convinced why Tina Brosnan's wish for an early detection for ovarian cancer is also my wish. Every woman deserves to have a fighting chance against this disease. A huge thank you to Dr. P and Dr. Randall. We truly appreciate your time and all that you do to improve the lives of women. A big thank you to all of you for tuning in and for your incredible support of Tina's Wish and our initiatives. Be well, take care and please be your own best health advocate.
Speaker 1:For more information about gynecologic health, visit tina's wish.org/what to know . That's tina's wish.org/wt, KNOW. And like, follow or subscribe wherever you listen to your favorite podcasts.