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™
Gynecologic Cancers: Facts & Differences
A conversation about the symptoms, diagnoses, and treatments for gynecologic cancers. Featuring Dr. Leslie Boyd of NYU Perlmutter Cancer Center and Dr. Kara Long Roche of Memorial Sloan Kettering Cancer Center. Moderated by Joyce Kulhawik, an Emmy Award-winning Arts & Entertainment Critic and Ovarian Cancer Survivor.
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 Joyce Kwick . I am an arts and entertainment critic. I review movies in theater, first on television for about 30 years, and now online on joyce's choices.com. I'm a three time cancer survivor. Two of those cancers are ovarian cancer. My first cancer was melanoma. 10 years later I had ovarian cancer. And a year and a half after that, I had ovarian cancer again. I've had chemo chemotherapy, I've had surgery, and I was misdiagnosed every single time. We discovered my cancers early, which is why I'm here today, because I insisted I was not well, because I got second opinions, because I found doctors who would hear me because I trusted my body to know that I was not well, even though people gave me a clean bill of health and released me from the hospital. That's what I've learned. We have to stick up for ourselves. We have to pay attention, we have to seek information, we have to insist on how we feel on getting second opinions and on making our way through the system. And then I was lucky enough to find doctors who could treat me. That is really what today is all about, about getting information that will empower you . And getting that information as early as possible is so important because the truth of your diagnosis, the truth of your cancer will out the earlier. You can face that and get information and insist and don't be afraid to challenge the better off you are going to be. And now we're gonna welcome our panelists, both from New York, Dr. Leslie Boyd, gynecologic oncologist from NYU Langone's, Pearl Mutter Cancer Center, and Dr. Carol Long Roche gynecologic oncologist from Memorial Sloan Kettering Cancer Center. Welcome to both of you, Dr. Boyd. We're gonna start with you. What is gynecologic cancer? And please define who a gynecologic oncologist is and what exactly do they do .
Speaker 3:Hi Joyce. Thanks for these questions and thanks for , uh, MCing this great event. Um, gynecologic cancer are cancers that arise out of the female reproductive tract. So the most common GYN cancers are ovarian , um, uterine cervical fallopian tube vaginal and vulvar cancers not in correct order, I will say. Um, and gynecologic oncologists are doctors who train in taking care of women with malignancies in those areas in the women's reproductive tract. Interestingly, unlike other oncologists, most gynecologic oncologists are trained to give both chemotherapy and performed surgery. So we are trained to take care of kind of the totality of the needs for patients in these areas.
Speaker 2:And Dr. Long, I'm aware that there are many differences among these kinds of cancers. So let's start with incidents . Which of these cancers is the most common gynecologic
Speaker 4:Cancer ? Um , well , worldwide , uh, cervical cancer is the most common gynecologic cancer. But here in the United States , um, where women have access to gynecologists and pap smears , um, endometrial cancer, which is cancer of the lining of the uterus is the most common , uh, gynecologic cancer in this country. Um, and it is something that we see every day in our practices here. Mm-hmm
Speaker 2:<affirmative> . And let's talk about mortality rate, and I think I may know the answer to this question, but which is the cancer, which gynecologic cancer has the highest mortality rate?
Speaker 4:So , uh, in the United States, the gynecologic cancer that has the highest mortality rate is ovarian cancer, actually. Um, it's not the most common cancer, but it is one of the hardest gynecologic cancers to treat and cure because unfortunately, most women with ovarian cancer are diagnosed when the disease has already spread , um, outside of the ovary or the fallopian tube mm-hmm <affirmative> . Um , into the patient's abdomen. And so , um, patients present , um, with advanced stage disease, which unfortunately is harder to treat and cure.
Speaker 2:And that's because it's so hard to find and diagnose .
Speaker 4:Yes. Um, some of the challenges that we face with ovarian cancer treatment are that there are , um, very few symptoms of ovarian cancer or fallopian tube cancer when it is in its early stages. And currently , um, we have no screening test or early detection tests , which reliably can find ovarian or fallopian tube cancer when it's small and early.
Speaker 2:So , uh, that leads me to , uh, a question for you, Dr. Boyd. Uh , how many of the gynecologic cancers actually do have screening tests or screening methods? Uh , you know, and when I go to my annual physical, when I get a pap smear, is that a good screening test for gynecologic cancers?
Speaker 3:Pap smears are excellent screening tests, especially when combined with a high risk HPV test for cervical cancer. But cervix cancer is the only cancer it's designed to screen for. So unfortunately we're left without screening tests for ovarian cancer, which as we discussed mm-hmm <affirmative> . Is a , is a huge problem. Endometrial cancer, although there's no screening test , thankfully, there's usually an early warning system, meaning that you generally have abnormal bleeding. So although we don't have a screening test for it, we do commonly find it relatively early. So unfortunately, really cervical cancer is the only cancer for which we have a good screening strategy.
Speaker 2:Right. And my mother actually was diagnosed with endometrial cancer and she did have an early warning and there was some bleeding. Otherwise, there would've been no way for us to even know. And they caught that very, very early. Uh , Dr. Long since cervical cancer is the only one with really an early detection test , uh, certainly it's very important to be aware of all the signs and symptoms of gynecologic cancers. What are some of the warning signs for some gynecologic cancers that we should all be looking for?
Speaker 4:Um, that's a great question, and it's something that I think every patient should be aware of. Um, any patient that has , um, abnormal bleeding. Um, so that's bleeding outside of the usual menstrual cycle pattern. So irregular bleeding, irregular periods, bleeding in between periods or very, very heavy bleeding , um, should always be evaluated by a gynecologist. Um, also any bleeding at all, even if very, very light or scant after a patient has gone through menopause , um, should be evaluated right away. And in many cases , um, it is the patients that present immediately for evaluation of that post-menopausal bleeding who were able to find uterine or endometrial cancer when it's early and very curable. Mm-hmm <affirmative>. Other signs and symptoms are things like bloating, difficulty eating a full meal, pain in the pelvis or the abdomen. Mm-hmm <affirmative> . Um, painful intercourse, changes with bowel function or bladder habits. Mm-hmm <affirmative> . And then a , another symptom that many people don't know about is any itching , um, or , um, or discomfort on the vulva or the vagina. So if there's one spot that's persistently bothersome , um, that can be a sign of vulvar cancer.
Speaker 2:Very interesting. Um, I know looking back on my own ovarian cancer, and I had those cancers when I was pretty young, I mean 34, 35, 36, I had almost no symptoms except bloating, frequent urinary tract infections. Um, and once I got so full, I couldn't finish a meal and I eat like a horse. So this was, you know, these are things that altogether might have suggested this and even so it was very hard to to diagnose, but I just wanted to put that out there because these symptoms can be really subtle. Um, Dr. Boyd, are there certain risk factors for gynecologic cancers and what are there way , are there ways to reduce those risks?
Speaker 3:Yeah, a again, one of the most effective ways to reduce the risk of GYN cancers that we have, you know, there's a vaccine now that is effective against many , uh, subtypes of HPV, which is the causative agent of cervix cancer. So cervical cancer, in addition to having an effective screening tool, also has an effective , um, way to avoid the cancer. So, so that vaccine, we really strongly suggest that all girls are vaccinated , uh, generally ages 10 and 11 prior to , uh, intercourse so that they can avoid cervix cancer. Uh , later in life at highest use, we think that vaccine will prevent about 75% of cervix cancers. And in countries that have had a high use of the vaccine, they've already seen a tremendous decrease in their cervical cancer , um, load. So that's , it can be effective if used . Um, beyond that , um, other risk factors or , well, family history is really important thing to talk about in patients, certainly with ovary and fallopian tube cancers and in some uterine cancers as well. So for those patients, certainly they can be associated with genetic mutations such as the BRCA one and two mutations and several others. And oftentimes those patients will have extensive family histories with other , uh, people in the family with either breast or ovarian cancer. That's something important to know about. Uterine cancer can be associated with a different genetic , uh, predisposition called lynch syndrome, and that can cluster both , um, endometrial and colon cancer as well as ovarian some other cancers less frequently. So also an important thing to know about other risk factors. Generally speaking, obesity tends to be a risk factor. Um, but aside from that, those are, those are the most important.
Speaker 2:So, Dr. Boyd , I'm just curious about the BRCA gene mutation as a risk factor. So many people seem to have that as a risk factor. Lots of people are getting genetic studies done, and we get a lot of questions about that. How much of a risk factor is that?
Speaker 3:Yeah, so the BRCA one and two gene mutations, and there's actually some other mutations that are related, make up about 15 to 20% of all epithelial ovarian cancers. The cognitive ovarian cancer that , uh, we are most worried about. So clearly much more common to get a nonfamilial associated cancer. But for those people who have the mutation, their risk of developing an o ovary or fallopian tube cancer is quite high. Depending on the mutation, it can vary between 20 to 65% lifetime risk, and that compares to a lifetime risk of about 1.5% for the general population. So we're talking about a really extraordinary increase in risk of developing these cancers.
Speaker 2:I'm understanding that there is a way to reduce your risk of ovarian cancer if you've taken birth control. Is that true?
Speaker 3:That is a great comment, yes. So being on hormonal birth control, any type for a minimum of two years and preferably to at least five years, once you hit five years, you reduce your risk by about 50%. And that's true even if you have A-B-R-C-A one or two mutation. So it's a common strategy that we have for our patients who are carriers. We ask them to go on oral contraceptive pills so that we know we can mitigate this risk for them.
Speaker 2:Who knew, honestly, when birth control first came out, we all thought it might kill us, you know , uh, and now we find out it might actually be a really good thing in terms of ovarian cancer. At any rate. Uh, and you know, in my case, I fell outside of all of those risk factors. There was no ovarian in my family , uh, I really healthy person, et cetera, et cetera. So while those things are, and I don't have that gene mutation, they looked at my gene panel and said, <laugh>, that's the most boring gene panel we've ever seen. So there's sometimes there's just no explanation and we just need to be watching, watching ourselves. That's right . Um , Dr. Long, how do you treat gynecologic cancers?
Speaker 4:Uh, the treatment of gynecologic cancers is very individualized. Um, meaning we , um, evaluate , um, lots of different factors when determining a treatment plan , um, the patient and their overall health. Um, what organ , um, has the disease and then what type of cancer cell is affecting that organ. So there are different types of cancer cells , um, that can be found in these, you know, the particular gynecologic , um, organs. And we also look at the distribution of disease, and that helps us to determine the plan for a particular patient. Very often, surgery is part of the plan , um, surgery to remove any visible , um, or palpable tumor or disease. Um, and then in certain patients, additional treatments are needed. Um, some medical treatments , um, like chemotherapy or other drugs that have been developed , um, that target these cancer cells. And then in some cases, radiation therapy. Um, so for example, cervical cancer is very often treated with a combination of radiation and chemotherapy. Um, sometimes also with surgery, ovarian cancer is more likely to be treated with surgery and medical therapy like chemotherapy. Mm-hmm <affirmative> .
Speaker 2:I think , uh, we should take some questions from the audience. I know everything you've said so far has probably made bells go off in some people's heads about what to do, what to look for. So , um, we have , uh, a first question here. Uh, and the question is, if I'm experiencing symptoms of a gynecologic cancer, should I first bring it up to my regular OB GYN ? Um, at what point would I go see a gynecologic oncologist? And what if there is not a gynecologic oncologist in my local community? This is a great question. I wasn't sure who to go to when I was having these symptoms. I didn't, I didn't know it hurt somewhere around my stomach. I didn't know whether I should see my regular doctor, my ob , GYN or somebody else. I didn't know either. Either one of you can jump in there.
Speaker 3:Yeah, I'm, I'm happy to speak to that one. I think it's a great question. I , um, it is reasonable to go to either your primary care physician or probably preferably your gynecologist to get evaluated. Um, the one comment I would make is that persistent symptoms deserve a full evaluation. And so oftentimes patients will be told, oh, don't worry, it's just a GI thing, or it's a passing bug. And I would be relatively insistent about getting a pelvic ultrasound depending on, on the symptoms. An ultrasound is, is , uh, relatively non-invasive , um, relatively inexpensive and quite available. You should be able to get one in most places. Mm-hmm <affirmative> . So I think that's a perfectly reasonable place to start. Of course, after a good history in physical examination mm-hmm <affirmative> . So I would encourage people to be a really good advocate for themselves. I've , I've had too many patients, unfortunately, who have been pushed off and told that they were fine only to come to see me a year later with an advanced cancer. Of course, that's, that's not the common thing that happens. Right. But it does happen, unfortunately. So we have to advocate for ourselves in these institute in these times.
Speaker 2:Yeah , I, I amen to that. I have heard that story a lot that , uh, I think it's very important to insist when things keep coming up, when symptoms persist, and then you've maybe gotta go to a specialist and , and passed and get a second opinion from someone else who may be able to zero in on that. Um , is there anything you wanted to add to that Dr. Long?
Speaker 4:Uh , I echo everything that Dr. Boyd said. Um, uh, any symptom that is lasting, you know, more than a week or two and doesn't go away, should be evaluated. Um, and I completely agree that if , uh, a patient is told that something is nothing, but they keep having symptoms, that they should feel empowered to , um, continue to advocate for a more complete workup. Um, and you know, it is difficult. Gynecologic oncologists are very, very , uh, numerous in New York City. Um , but there are places in the country , um, and certainly the world where there are not gynecologic oncologists. And I think , um, that, you know, communication with the specialists or the, the OBGYNs in your area as to how best to get the care that you need is the most important first step.
Speaker 2:You know, you're making me think of one other important point that I think comes up for women, and that is women often don't like to challenge a doctor. And I always say to people that a good doctor welcomes input, welcomes second opinions will actually facilitate that for you and make that happen. Um, and no one likes to really challenge their doctor, but your first duty is really to yourself and your own health. And I will say that if I had not challenged my doctors and I love my doctors, but if I hadn't challenged some of my doctors, I wouldn't be here today. And that's the most important thing. Uh , we have another question here, and that is, should women consider clinical trials after being diagnosed with cancer?
Speaker 4:Um , I can, I can answer that. Um, clinical trials are, are a wonderful thing. Um, this is where all the new , um, and better treatments begin. Um, whether there is an appropriate clinical trial for a particular patient is a decision , um, that will be made between them and their, and their treating doctor. Uh, so , um, a gynecologic oncologist should be able to guide patients , um, whether , um, there is a , an additional option other than the standard treatment that might be right for them. Um, and if there is , um, we always encourage patients to consider mm-hmm <affirmative> . Um, clinical trials , um, are not always the right decision for a patient, but in many cases they are. And again, in many cases, it's an opportunity to get treatment and something that might be newer and, you know, more effective.
Speaker 2:And it certainly is a way to help , uh, help science in a sense. I mean, I, I , uh, would always welcome the opportunity to be part of a clinical trial , um, because it adds to the, the larger body of information that's gonna help all of us. So it's a way that it's almost a way you can kind of give back while you're doing your own treatment. Uh, if I may, we have a question here about cysts, ovarian cysts. If you've been diagnosed with an ovarian cyst, is that something that could be a precursor for ovarian cancer?
Speaker 3:So, I'm happy to talk about this. The vast majority of ovarian cysts are benign, meaning they are not cancerous. And the ovaries, certainly in a pre-menopausal patient, they make cysts for a living. That's kind of what they do. So, you know, having normal ovulatory function means that you're going to have cysts in your ovaries. So having an ovarian cyst is not necessarily bad. We are really lucky to be in a time where imaging techniques are so easy to come by. And again, ultrasound I will point to. So we can use how the cyst looks on ultrasound to risk stratify whether or not we need to be worried about that cyst. Again, the vast majority of cysts will have really benign looking characteristics and usually just need follow up unless they're symptomatic because of their size. It's really a small minority that have worrisome characteristics, which if present should prompt the gynecologist to send that patient to a GYN oncologist for further evaluation.
Speaker 2:Okay. So don't panic if you get diagnosed with a cyst, it's absolutely , it's most likely. Okay. It doesn't mean you're gonna have cancer. Okay. Good to know. Can, can you tell us about some of the hopeful research progress that's being made right now for treatments for early detection , uh, methods for figuring out how to diagnose these gynecologic cancers early and treat them once we have them?
Speaker 3:Sure. That's a , a broad question, but happy to discuss it. There are a lot of new imaging modalities that are constantly being evaluated. Um, certainly ovarian cancer and I'll say ovarian and fallopia tube cancer. 'cause often they are, are kind of grouped together are, as we discussed earlier, really problematic because we tend to find them quite late in the disease process. And if we could identify them earlier, we would do so much better. Our current standard, which is ultrasound , um, and, you know, and really waiting for symptoms, we don't have a good screening test for standard patients or routine patients , um, really is not acceptable. So if we can get better technology, then patients will do better. And , and certainly that's in the works. That's true both for imaging studies as well as , um, blood tests. So looking at different tumor markers and combinations of tumor markers with imaging studies to see if we can identify a trend that shows that something is happening kind of a , a pre-cancerous state . We don't , we don't seem to be able to find that yet.
Speaker 2:And, and a marker would be something you might find in a blood test?
Speaker 3:Correct. So right now we use a CA 1 25 commonly as a marker to follow patients with their disease. Um, not everyone who has ovarian end fallopian two cancer will have an elevated CA 1 25, but for those with advanced disease, about 75 to 85% of them will. And for them it's helpful to follow their disease course. However, using it and screening has been far more problematic. 'cause again, it's much less likely to be elevated in early stages and, and far less so kind of in a pre, there's no pre-cancerous state that we've really identified well for ovarian fallin tube cancer. And if we could do that, then we could intervene early. Mm-hmm <affirmative> .
Speaker 2:Got it. Are there any other , uh, research studies that you're aware of, Dr. Long or any other kinds of studies that, and advances that people are making around diagnosing gynecologic cancers earlier and treating them earlier?
Speaker 4:Um, well, we , uh, we are using some novel , uh, technologies. So for example , um, some of the researchers , um, at our various institutions are looking at machine learning. So having a computer look at fluid samples and blood samples to see if, if the computer can do a little better than we can by looking at patterns of proteins in the blood and in the fluid to try to identify very, very early subtle changes that might be associated with , um, within an early ovarian cancer or fallopian tube cancer. Wow. Um, and in doing that, looking at proteins that we may not even be able to name or identify, but if the machine or the computer can identify these patterns, we may be able to translate that one day to a screening test in the clinic.
Speaker 2:Do either of you have any additional advice you wanna share with us before we leave today? Something that would help everybody out there who's really wanting to take charge of their gynecologic health?
Speaker 4:Um , one thing that I think is very important , uh, for all patients to know about their own personal history , um, is whether they might be at risk for carrying one of these genetic mutations that would elevate their risk of developing an ovarian or fallopian tube cancer , um, but also other cancers like breast cancer or uterine cancer. One easy way , um, to , um, look into your own risk of whether you might carry one of these mutations is to talk to your doctor in depth about your family history, not just your parents and your siblings, but their parents, their siblings, cousins , um, and to let your doctor look over your family history to see whether there are any worrisome patterns , um, whether cancer runs , um, on one particular side of the family. Um, and then your doctor can help decide whether you should have genetic testing. Genetic testing is , um, as easy as a blood test. Um, and it can give you a wealth of information about your own risk. And that in turn can lead you to doctors who can help you to decrease that risk. And for gynecologic cancer, specifically, if we know that a patient has a genetic mutation, we can help to counsel them so that they can opt for individualized risk, reducing strategies and plans to help take that very high risk that Dr. Boyd was mentioning very, very far down to, to almost average risk. Um, and so that's just the last thing is just talk to your doctor about your family history and whether genetic testing is right for you. Mm-hmm
Speaker 2:<affirmative> . Great. Uh, I'm very encouraged by all of this as a matter of fact. So just wanna say a huge thank you to Dr. Long and Dr. Boyd for joining us , being so candid, so open, and so available to all of us together as we take charge of our health. Thank you so much. You're on the front lines there. And we , uh, we thank you for everything you're doing to improve the lives of women. Uh, I wanna thank everybody for tuning in today. This is just fantastic to all of you, be well. Take care, be peaceful . Take care.
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