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™
Don't Grin and Bear it: Signs & Symptoms of Ovarian Cancer
Hosted by comedian and 2x ovarian cancer survivor, Karen Mills, and featuring Dr. Gizelka David-West, Gynecologic Oncologist at Northwell Health and lead singer of the band N.E.D.
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 Karen Mills, and I've been a nationally touring comedian for over 25 years and am a two-time ovarian cancer survivor. Today we're kicking off our three-part series, ovarian Cancer 1 0 1, in which we will be covering the basics of ovarian cancer. Before we begin, I want to give you a high level overview on ovarian cancer. Ovarian cancer is the number one deadliest gynecological cancer . 80% of women are diagnosed at an advanced stage. The five-year survival rate for those diagnosed at advanced stages is only 27%. 200,000 annual deaths are attributed to ovarian cancer globally. And our goal at Tina's Wish is to change these numbers. I'm so excited to introduce our subject matter experts , Dr. Gazelka David West. Dr. David West is a renowned gynecological oncologist at Northwell Health and the lead singer of the band , NEDA Rock Band, formed by five gynecologic oncology surgeons. Welcome.
Speaker 3:Thank you, Karen, for introducing me and inviting me to this awesome, awesome, informative talk. I'm so excited. This is great.
Speaker 2:<laugh> . I, I need to know about this , uh, this band.
Speaker 3:Yeah. So as you mentioned, I am a GYN oncologist with Northwell Health. I'm actually in our Westchester region of New York. Um, and yeah, I am the lead singer of No Evidence of Disease or NED, which you very much know what that term means as a survivor. It's a , the words all cancer survivors are cancer patients want to hear at the end of their journey. Yes. And so we are an advocacy and awareness band for gynecologic cancer. Um, our slogan, or one of the , um, former members had quoted breast cancer has a ribbon, gynecologic cancer has a band. So I think we , we make a lot more noise, <laugh> .
Speaker 2:I love that. That's so cool. Yeah. <laugh> . Well, today , uh, we'll be talking about the signs and symptoms of ovarian cancer. So let's start with the basics. What is ovarian cancer?
Speaker 3:Sure. So , um, we'll go even more basic to what are the ovaries, right? I think some people listening may not even know what ovaries are. Right. So they are these small organs that are part of the reproductive tract of females. Um, and they are the powerhouse of the female reproductive tract. Uh, they house our hormones, estrogen and progesterone, and as many other organs in our body, they can be at risk for it turning into cancer. Um , what's unique about ovarian cancer is the term ovarian cancer kind of is an umbrella term for , um, two other cancers that all kind of are intermixed and are similar. Um, a lot of research has told us that ovarian cancer really starts at the fallopian tube, which is also a structure part of the reproductive track . And so fallopian tube cancer, ovarian cancer, and then another term primary peritoneal cancer, are all kind of under this same umbrella of , um, ovarian cancer. With these, at the cellular level, these , um, cancers can develop in either of those regions of the anatomy.
Speaker 2:Well, what are the, the typical symptoms or warning signs that someone might have , uh, ovarian cancer?
Speaker 3:Right. So this is tricky and it's actually really tough . Um, ovarian cancer decades ago used to be called the silent killer. Right. But , um, over years of research and discover , we found that there are actually symptoms. The symptoms are just so vague and tend to be misdiagnosed , um, or just disregarded. So symptoms such as bloating, feeling full after eating small meals, maybe some nausea, some vomiting, having urinary discomfort or symptoms of frequency, urgency, pelvic pressure. Um, all of these can be chalked up to anything , um, anything related to other parts of your body. But these are , uh, some of the symptoms that we see with ovarian cancer.
Speaker 2:For me personally, I , um, you know, I just felt bloated and I never felt like I could empty my bladder. And I had this , um, and I was fatigued and, but I just wrote it off as menopause because everyone my age was tired and <laugh> , I didn't feel like they could empty their bladder. Mm-hmm <affirmative> . You know, that wasn't anything unusual. And , um, so, you know, I just, and I had this, I could not lose my stomach and I , and I was trying to , uh, diet and exercise and I couldn't understand why I couldn't lose my stomach. Then I thought, well, you know, I've always heard people talk about getting a spare tire tire at middle age and all that, so I just completely wrote it off to to middle age spread kinda thing .
Speaker 3:And I cannot tell you how many times I've heard that story over and over and over. And I think the key to these vague symptoms, or could just be menopause or just a urinary tract infection, or it's your inflammatory bowel disease. Right. How many times have we heard that the , the important part to remember is the persistence. If these symptoms are not going away after two weeks, they're there. You've tried the heartburn medicine, you've tried to empty your bowels, you've <laugh> taken the medicine for the urine infection, but these symptoms are still there. That's when you really need to stop and pause. Is there something else going on? What hasn't been checked yet? And I think that's , um, that's really the crux of it, and that's how we can hopefully help prevent the misdiagnosis that we see so much of.
Speaker 2:Well, and there was one time, you know, aside from just those basic symptoms , uh, I was experiencing, I did have one time where I had really excruciating pain in my abdomen and it lasted for about 30 minutes and I almost went to the emergency room that night. But instead I went to WebMD and , uh, diagnosed myself <laugh> with IBS. So <laugh> , as you said, a lot of people just think it's that, and , but that was the only time there was any real pain. Right . And so, again, who hasn't had cramps, so I just thought Exactly.
Speaker 3:Exactly. The , and pain doesn't , n doesn't necessarily always present itself in these situations. It's not always pain, but like you said, it could be just this one episode that kind of come flares and goes, and that's what happens. We kind of go down the internet rabbit hole, you know, and , um, the WebMD is great, Google, md, whatever you want. But MD we still, we still matter that clinical exam <laugh> , that I
Speaker 2:Know you do. And it's so , and that's why , that's why I bring that up, that, you know, I , I didn't need to diagnose myself. Yes, we can Google things and we can get an idea of things, but you need to see a doctor <laugh>.
Speaker 3:Sure , for sure.
Speaker 2:'cause there's a lot of things that can present themselves as, as those symptoms. And you don't need to decide absolutely yourself that that's all that is <laugh> .
Speaker 3:I will , I will say though, seeing the right doctor is key. Right. I think there's, sometimes you may go to the primary care or a gastroenterologist and they will do their own workup for something, but then won't think about ovary cancer. Right, right . Or any other gynecologic cancer. So making sure you loop in your gynecologist as your kind of figuring out what is going on with me. 'cause that's really important as well.
Speaker 2:Absolutely. And I , uh, I had a scheduled appointment coming up after that pain episode, like only like six weeks later. So I thought, well, I , I'll just wait and talk to her about then. And so , uh, she was examining me and when she got to my abdomen, I mean, the blood drained out of her face and she said, you have a huge mask . And she said, didn't you feel that? And I said, well, I just thought it was weight i'd gained gained from menopause. And I later felt really stupid because I did notice it wasn't as soft as like fat, it was more dense. And so that should have been, you know, that should have been a clue, but you just don't, but
Speaker 3:At hindsight is 2020. Right. You know, it's , um, I, I never, anytime I meet patients who share their story like this, I I always start off with reminding them that it's, it's not your fault. Nothing wrong. You did. I mean, this is, it's human nature to think of other things and not think of the worst. Nobody wants to think they have cancer . So we think of everything else that's, you know, fixable and easy. Right. Um, but , um, um, but yeah, it's, it's tough. It's very, very challenging.
Speaker 2:Well, what is the difference between the symptoms of ovarian cancer and symptoms of other gynecologic cancers?
Speaker 3:Yeah. So , um, as I mentioned, ovarian cancer, these are very vague symptoms with the other gynecologic cancers, particularly let's say uterine cancer or endometrial cancer, this is , uh, the, actually the most common one that we see. You have vaginal bleeding, right? Uh , particularly post-menopausal bleeding. Right. So any blood after menopause is not normal. Right. And so the minute you see that drop of pink brown , um, or heavy bleed, it's not oh my period coming back. It needs to be worked up. You know, there's no telltale sign like that for ovarian cancer. Another cancer that we deal with is cervix cancer. Cervix cancer is , um, typically you can still have abnormal bleeding, but a lot of times it's diagnosed based on a series of, let's say, abnormal pap smears , um, that then show abnormal cells and then a biopsy. Right. But more advanced stages of cerv cancer can present with pelvic pain, pressure, back pain, leg swelling, bleeding, urinary discomfort. So kind of a little crossover in symptoms. Um, but I will say those cancers have more telltale signs than you would particularly see with ovarian cancer. With
Speaker 2:Ovarian. Uh, and, and you should wait, you know, when you start feeling anything or seeing anything unusual that you're not sure about, you shouldn't let it go more than how long, couple of weeks or, yeah.
Speaker 3:I mean my and my rule book, the minute something, especially the vaginal bleeding, let's say that to me is, is fear . If it's kind of abnormal for, let's say you're a menstruating woman and now you all of a sudden have irregular menses or periods that have never happened to you before you call your doctor 'cause you don't know what their schedule is, they may have <laugh> , they may be booked up. Right? Right . And so you might , they'll make that call and get on their schedule 'cause they may not be able to see you for another two to four weeks. Right. Right.
Speaker 2:Um ,
Speaker 3:And then , um, but for example, if these vague symptoms of ovarian cancers we described, yeah. If it's two weeks of kind of this persistent symptoms that you're just, they're just not going away. You've tried certain remedies, you gotta make that appointment. You gotta call the doctor, get it checked out.
Speaker 2:And is there any type of early , uh, detection screen at the doctor's office? Like pap smear membrane ? Right ? No.
Speaker 3:Yeah. You bring up pap smear. So pap smear , uh, is purely designed to screen for cervix cancer. Uh, I think that's a misconception and a misunderstanding. Um, you know, I think pap smear for a long time was synonymous with , oh, I'm going for my GYN checkup. I'm going for my pap smear. You know, that's gonna, that's a be all end all screening for everything. But it's unfortunately not. It's purely just screening for cervix cancer. And it's an excellent tool for that. But it doesn't screen for ovary cancer doesn't screen for uterus, cancer doesn't screen for vulva cancer or vaginal cancer. Right. So it's purely detecting on the cervix. Now, could it , could that test pick up some abnormal cells that maybe trickle down from, let's say, the uterus onto the cervix? Sure. Have we diagnosed uterus cancer from a pap smear? Sure. But that's not designed for that. We haven't yet diagnosed ovarian cancer from a pap smear. Um, but again, if little abnormal cells kind of trickle down that don't go along with the cervix, then that clues in the doctor to, Hey, let's do more testing. Why is this happening? But it's really not a , it's not a screening test for ovarian cancer. And so we really don't have a screening test for ovarian cancer, making it that much harder to detect this deadly disease.
Speaker 2:This may be a stupid question, but it certainly won't be the first one I've ever asked. Um , <laugh> , is there any reason to get a pap smear after you go through menopause?
Speaker 3:That's a great question. I love this question. And so the answer , um, is yes, because guidelines state that up to age 65 you should be getting pap smears. And depending on your history, like if you've had all normal pap smears your whole life, HPV testing, 'cause that's part of the pap smear and screening for cervix cancer is HPV human papillomavirus testing. Um, if all that's been negative your whole life, you get to 65, you can have that one last pap smear and say , and see you later , um, see you later to pap smears, not see you later to your gynecologist. You should still go every year for an exam. 'cause you still have a vulva, you still have a vagina. And if you still have those internal organs, they're there and something could happen. And I think those yearly visits , um, are helpful because you may bring up a symptom or, or a sign that you may didn't think of, think was anything, but then your doctor gets clued in and starts a workup, then may find something early as opposed to late stage. So definitely keep going. I would tell patients, keep going to the gynecologist. <laugh> doctors can end at some point , but keep gonna the gynecologist go say hi, make it a social visit.
Speaker 2:That's , that's very good information to know. <laugh>. Um , and for me, my , um, uh, ca 1 25 blood test was a, a big , um, telltale sign. Um, for anyone who doesn't know, normal range is zero to 35 and mine came back at 11,000. So , um, that is something we continually check. And when I had my recurrence after the exam, everything seemed fine. And then , uh, I, they did the blood test and it came back like four something. And that was reason for concern. And then we thought, just to make sure it wasn't mostly elevated because of it , tell me if I'm wrong, but my understanding is that , uh, ca 1 25 measures inflammation in the body and other things can cause it to be high, and that's why it's not actually used as a marker. Is that correct? Correct.
Speaker 3:Um, it's , um, it's a great test to have once you have the diagnosis of ovarian cancer and like you had correlated with the disease, went down with treatment, came back up with recurrence, great marker. But for screening the whole entire population, you send the C 1 25 and everybody, you're just getting numbers all over the place. People getting nervous and maybe having indicate surgeries. You know, there's no biopsy of the ovary, just like, let's say breasts. Breasts, you have mammograms and if you see something abnormal, you can do a little needle biopsy. The breasts are easily accessible, ovaries are deep in your pelvis, bowel and intestines are kind of floating around all over , uh, all over that area. So you can't just stick a needle to poke at the ovary. Um, and so what it means is if you find an elevated C 1 25 or , uh, then you take somebody to an abdominal surgery, some kind of exploration that may not have been indicated and you're putting them at risk for complication.
Speaker 2:And with, with me, I had a CT scan after it came back elevated at four something and the CT scan was negative. Mm-hmm <affirmative> . And they retested my ca 1 25 and it had doubled. Yeah . And so then they did a PET scan mm-hmm <affirmative> . And they found a spot in my lymph node.
Speaker 3:Right. Yeah. So you had a very isolated early recurrence, small volume disease that Yeah. That ca 1 25 was, it was rearing its head saying how , you know, something's happening, but it wasn't big enough disease to be at 11,000 like it was when you first presented. Yeah .
Speaker 2:Yes. So that , that was very beneficial has been for me. And , uh, yeah , you explained there's, it doesn't always work that way. <laugh> , so, yeah . But I think your doctor can kind of guide you on how much of a , an indicator that is for you personally, correct.
Speaker 3:Absolutely. Absolutely. I think that's , um, really what we, what we do when we're , um, sending that blood test, sending imaging, correlating everything. I tell patients, you know, let's gather all the pieces of the puzzle. Let's put everything together, see what we find, then we can make sense of it. You know, you may have an elevated C 1 25 , but your scans show fibroids or a benign looking cyst, which can cause a ca 1 25 to be elevated. That's not a reason for concern. It's a reason for let's monitor, let's repeat, let's trend the value. Just like in your case, they repeated the number. Right. I always say also, one value is just one snapshot in time. What is the trend doing? 'cause that trend tells you more than just that one value.
Speaker 2:I see. Yeah . Well, as you said, misdiagnosis and underdiagnosis is unfortunately common for folks with ovarian cancer. And if someone is dismissed by their doctor, but symptoms persist, what next steps would you recommend
Speaker 3:That's , get another opinion, call a friend, find out who do you know? That's a very good gynecologist, or a gynecology oncologist saying that I'm having these symptoms. I heard this amazing podcast with Karen and Dr. David West as part of Tina's wish. You know, I need, I need somebody to really take me seriously, advocate for yourself. You know, I think , um, you don't need to be a crazy person and kick and scream, but really just keep pursuing. Again, I've had those patients as well. Um, some near misses, some fortunately was just a , you know, a benign ovarian cyst, but it all the same symptoms, you know, and then we did surgery, thank goodness it was benign. But then you have the cases where unfortunately it was cancer, but you gotta keep pushing. You know, a lot of times, unfortunately, some doctors may dismiss, dismiss the symptoms or do a preliminary workup that's negative and say, oh, you know , it's just menopause. You know, or it's just urinary tract, you know, we'll see you in a year, but if you know your body, you know yourself, I think that's, you know it better than anybody else. Right. And so , <crosstalk> , that's
Speaker 2:What I was gonna say. I mean, you, you have a feeling. I mean, I've always, you know, since dismissing that in the beginning to menopause, I've always kind of stayed, tried to stay in touch with my gut and what I feel when something is off. And I think we all, if you tune in, you can always, you know, have that feeling and you need to follow it for sure. And be your own best advocate. So , and you know, anyone can check out our podcast on how to advocate for yourself as a patient for more information. And , uh, you know, in closing, Dr. David West, I thank you so much for joining us today and a huge thank you to everyone listening. We hope you all walk away from today's episode, having learned something new and feeling more empowered in your own health. And if you are someone you love , uh, experience any of the symptoms we discussed today for more than two weeks, please, please, please see your doctor and advocate on your own behalf. Be sure to tune in for the rest of our ovarian cancer series as we cover what puts someone at risk for ovarian cancer and how to reduce that risk as well as the importance of detecting ovarian cancer at an early stage. Thank you so much.
Speaker 1:For more information about gynecologic health, visit tina's wish.org/what to know . That's tina's wish.org/w att T-T-O-K-N-O-W . And like, follow or subscribe wherever you listen to your favorite podcasts.