The Silence Behind Gynecologic Cancers: Expert Q&A

Gynecologic cancers have long been silent and are often detected too late. However, with the advancement of testing, screening, and genetic discovery physicians and researchers have found ways to detect and even help prevent many forms of gynecologic cancer. During this segment, general obstetrician and gynecologist Dr. Maryam Siddiqui and gynecologist oncologist Dr. Nita Lee will explain possible signs and symptoms reducing risks and the best forms of prevention. And they'll answer your questions live coming up right now on At The Forefront Live.

And before we get started, we want to remind our viewers of two things. First of all, today's program is not designed to take the place of a visit with your actual physician. And you can submit your questions. And we'll get to as many as possible over the next half hour. Let's start off with the two of you introducing yourselves and telling us a little bit about what you do here at UChicago Medicine. And Dr. Siddiqui, let's start with you.

Hi. I'm Maryam Siddiqui. I am the Vice Chair for clinical affairs for the Department of OB/GYN. I've been at UChicago for the past 10 years. And before that, I worked on the west side of Chicago and have really enjoyed taking care of women in all stages of their lives.

Perfect. Dr. Lee?

Hi there. My name is Nita Lee. I'm a GYN oncologist, also in the OB/GYN department. I have also been here for almost 10 years. And I take care of women who are diagnosed with a gynecologic cancer. And that includes surgical care, chemotherapy care, and survivorship care afterwards as well.

And before we get too far into the show, I want to give a quick shout out to the Foundation for Women's Cancer and the Society of Gynecologic Oncology. They both are-- publicize this, a little Facebook Live which we appreciate. And I know we've got some viewers from those two sites.

Now, as we start off, let's go ahead and get into just what are-- and Dr. Lee, we'll start with you-- what are gynecologic cancers? And can you tell us about the different types?

Yeah There are actually quite a few types of gynecological cancers. We think about anything that can happen below the belt in terms of the gynie world. So we think about vulvar and vaginal cancers. So those are cancers that can-- the vulva is the skin on the outside genital area. Those can develop a cancer that's almost like a skin cancer. Vaginal cancers, which is in the walls of the vagina. Cervical cancer, which many people have heard about, because we can screen for pre-cancers and catch early cancers.

Uterine cancer or endometrial cancer is one of the most common cancers, which is about 66,000 women a year. It is the most common one that we see. And ovarian cancer, which is about 20,000 a year as well. So overall, they're not necessarily as common as other cancers. But they're very important because oftentimes we don't spend a lot of time thinking about them or talking about them. And so it's important for women to know that they exist and what symptoms could be.

It's interesting. I was looking at some of the comments that were made even before the program started. And vulvar cancer came up a lot. And we were talking a little bit before the show. It's a fairly small area. But it's obviously something that people are very passionate about. Can we talk a little bit more about that and the significance? And why is that so difficult to detect?

I think this is the epitome of why-- it's not necessarily always difficult to detect. But I think a lot of women may not see an expert in vulvar skin or vulvar cancer. I think many women who are more at risk for vulvar cancer may not realize that they should actually see somebody in GYN or GYN oncology to do a biopsy. It can be a little bit confusing at times. So I think until it's on people's radar like, hey, I need to do a sample of this unusual area or this new lesion, it can sometimes go a little bit further and can be very confusing, because we don't have a lot of public education about that.

I think the below the belt cancers in general don't necessarily have as much attention paid to it, because women or anybody who has any issues in the GYN area may feel a little bit more shame or embarrassment, which we should not, because it's an important part to take care of. But I think vulvar cancers sometimes fall into that, unfortunately. About 8,000 in a year will get diagnosed with vulvar cancer.

So is this something that women need to talk to their OB/GYNs about and is there screening that specifically they should discuss with them for that?

I don't know. I'll have Maryam answer that one in terms of what questions you should--

Sure. Go right ahead. Well, I think to what Dr. Lee was saying that there's a lot of overlap with symptoms that may feel like, well, this is just an itch or this is an irritation. There's a lot of well, let me try this over-the-counter thing. Let we try to solve it with maybe yeast infection medicine. And you never really take a look yourself and never really may have a chance to have someone examine you.

What we see is a lot of people will come in, and they will have hit the health care system in a couple of different places. But they haven't seen a gynecologist. And I think that trained expertise with either a gynie or an APP or somebody who has done women's health care and really looked and at normal vulvas can really identify what an abnormal area is.

So I think the first what Dr. Lee said about taking away the shame of that examination and all of that is really important. But also really, if something doesn't get better, if something is persisting-- either discharge, abnormal bleeding, or skin changes-- then it's time to have someone take a look. And maybe you need a biopsy. But then, it's the mystery is solved. And you're not really letting something go unchecked for a long period of time.

I've always been a firm believer in establishing a relationship with your physician. And I think that's obviously very important in a situation like this, because if a woman can be comfortable with her doctor that's going to help a lot. And I would imagine that's something that you stress and you really strive to work towards, both of you.

I think that's the main thing is that we really focus on a particular area of women's health. We really focus on the gynecologic and pelvic organs. And that's your time to really focus on how are my periods? What are my other symptoms? What else is going on that can clue us into what do we need to focus on?

And a lot of times, people will say-- I'll ask a patient. I'll say, when was your last pap smear? And they'll say, oh, it was last year. And my next follow-up question is always, where was it? And if they say emergency room, I know that they are using those words interchangeably of a speculum exam and a pap smear. And so that's why seeing somebody who's trained to do gynecologic care is really important, because you're maybe seeing another health care provider. But you're not getting the preventive care that you need.

So we do have questions from viewers. And I want to try to get to as many as possible over the half hour. First one, then, I'll throw. And either one of you can take this. The question is, I've had a total hysterectomy over 20 years ago. Do I still need to see a gynecologist?

That's a great question. So that's actually-- sometimes, after having your kids or having a hysterectomy, people think, oh, I don't ever need to see the gynecologist again. That's all taken care of. But one of the things we were talking about is the title of this talk is sometimes gynecologic cancer is silent.

And so you really want to have someone do an external examination, go through any of the other symptoms maybe you're having, and see if there is a family history type of thing that can be identified. That's important to address some of the other things that can be going on. Maybe you don't need to go every year, but every other year certainly. And it's all part of wellness.

Yeah. When in doubt, it's probably a good idea to make an appointment to see your physician, and do it on a regular basis. Another question from a viewer-- what are the possibilities or prevalence of smear-- a severe-- excuse me-- endometriosis stage 4 contributing to the development of gynecological cancers? And I don't know. Dr. Lee, you want to--

Yeah. Yeah. This is a really important question that I think people are researching more and more. We do know that endometriosis and women who have had endometriosis which is a benign condition of having gland that should belong in the uterus outside in the ovaries, sometimes this can cause infertility. This can cause people periods. Or it can cause a lot of chronic pelvic pain. We do know there is a link to with endometriosis in the development of ovarian cancer. There is a higher risk. And so it doesn't mean that everybody who has endometriosis will go on to develop cancer.

But because that risk may be a little bit higher, really keeping up with your exams, making sure your doctor is following any cysts or anything else like that, and really working with your doctors to make decisions about when surgery is needed versus follow-up is really important. There are like genetic things that we're looking at and other types of research that's being done at the molecular level to look at precursors towards endometriosis and cancers that arise in endometriosis as well.

We are getting so many great viewer questions. I just want to keep going with these. And I also want to use-- Yeah. We'll answer them at some point.

--our little graphics. We'll just keep rolling with them, because these are really good.

That's great.

So the next one is at what age should someone stop getting pap smears?

That's a great question. So usually, we say 65. But that depends on a couple of things. That depends on I've never had abnormal pap smears or had biopsies in the past 20 years that have shown pre-cancer. Then, you could probably stop at 65. I've had multiple pap smears that have been normal. And the HPV testing has been negative over the last seven to 10 years. And then, you can say, all right, it's OK to stop at 65. We do find cervical cancer after the age of 65. So there are people who are at higher risk. And those people may need to continue after 65. And so that's a very individual conversation with your care provider.

Another question--

I would agree completely. Sorry. I was going to say about 20% of our patients who are diagnosed with cervix cancer are over the age of 65. So this is very important, what those recommendations that Dr. Siddiqui said. You don't know your history. Or if you're a provider and you don't know your patient's history, I feel like if it's been a long time, doing one pap and HPV test could be very helpful.

I am curious. If there's a family history, does that have much of an impact?

So we don't think of cervical cancer as a familial cancer the way you may think of breast cancer, or ovarian cancer, or even colon cancer running through families. But there might be something that diminishes your ability to clear HPV and your own ability to correct all the tumor cells that we make in our bodies all the time. So if you have a family history of cancer, then you would have to be especially careful about staying on top of your regular screening.

And I love the little fact that just came up on the bottom of the screen. And it talks about smoking and how harmful that can be. Any time we do one of these programs, it doesn't matter what we're talking about, smoking always makes it worse. And this is another example. Another question from a viewer. I had a CT and ultrasound when I had a lot of bleeding and pain. And the results said my left ovary wasn't seen. The doctor said it was no big deal. But it was there a year prior. Is this something I should be concerned about?

I think that sometimes imaging can be a little bit challenging. CT scans or ultrasounds can sometimes have-- be blocked because of bowel or bladder, like different things. So if the ovary was not seen, obviously, you'd need to talk to your doctor about specifics. But it may be, because it was small and there wasn't a mass there or a cyst there. So that may be what that reflects. Sometimes, after menopause, it's often hard to see ovaries on CT scan or on the ultrasound. It really depends on age and what was seen before. But sometimes, there are just limits to the-- to those imaging.

Another interesting question from a viewer-- are you seeing good success-- and I'm not sure if it's WISP or W-I-S-P trial for the younger BRCA2 patients?

We were enrolling our patients. And this is a trial. The WISP trial is a nationwide trial, where we are a site. Dr. Romero, one of our gynecologists, is one of our psych PIs for that, where we're looking at the role of removing tubes and not necessarily ovaries, depending on what women want to do for risk reduction for genetic predisposition to tubal or ovarian cancers. We don't have the results yet. But I think because it was a study that's looking at quality of life, menopausal symptoms, it's going to be very important. We're so happy for our patients who enrolled, quite honestly. So we don't have those yet.

Another interesting question-- and this one-- A lot of times, we hear about self exams for other types of cancer, breast or whatever. And this one is a question about doing vulva self exams, if that's advised. And if so, what should someone look for?

So we haven't typically advised vulvar self examination. It's more like self awareness. So if you have itching or if you have discharge, to use a hand mirror to take a look and see if you notice anything. And that would be a trigger for you to come in. I think the other cancer that is actually the most common cancer in this field is actually uterine cancer.

And you have an external way of self examination. What are your periods like? And if your periods are very irregular, or if they've always been regular and now they're irregular, or if you go three months at a time without having a period and you're not on a medication that would stop that, that's an external indicator that something is off. And so that's not necessarily something like a breast self examination, which we've talked about in the past. But it's an external indicator of your uterine lining and what's going on. And so that can be helpful to trigger some of those conversations.

And Dr. Lee, can we talk about--

I love how you said that. I love how you said that. And I will say definitely after menopause, checking out that bleeding or irregular discharge is so critical, because we're lucky to be able to find uterine cancer early when women act on those symptoms. Women who get told, don't worry about it, it's your fibroids, or think to themselves, or talk to their own social network, and don't get treated, sometimes, we see this advanced when we had signals before. So this is definitely something I totally agree with Dr. Siddiqui.

So we have more-- more viewer questions. This one-- I just turned 53, haven't experienced menstruation in months. But I still cramp. Is that normal?

I think that's OK. If you were to come into my office and I-- and you said that to me, and said, I don't bleed. But I have cramping. I may do an examination, and see, and feel. And if I feel something, we might do an ultrasound. But really, bleeding at-- is what we're looking for after menopause, or bleeding after sex, or bleeding on your own would be something that would really trigger a workup and more studies to be done.

Sometimes, you might have some cramping, but because the lining is very thin, you might not have any bleeding, and that's OK. And that would be expected. But anything that persists and even that isn't readily explainable, that's where the silence can be deadly. And so you want to come in and get evaluated.

Our next question comes from someone who has ovarian and endometrial cancer. Chemo and surgery have been completed. Aside from CA 125, what can we do to detect recurrence early?

This is a really good question that comes up. CA 125 is a blood test that can be elevated in ovarian cancer, for example, or in some other cancers. It's not a perfect test. But we often use that to guide us, so that if the CA 125 is normal, we don't always-- and the exam is normal, and our patients don't have new symptoms, we don't always jump to a CAT scan, or a PET scan, or anything like that. It's not necessarily recommended.

But everybody's treatment plan and decision about how you do surveillance is very unique. So it may depend on what your scans looked like before, if there's any particular concerns that your doctor had during surgery. So in general, it's some combination of exams, blood testing, and really watching your symptoms. Some studies have demonstrated that symptoms and self awareness of new symptoms overall such as bloating, pain, bleeding can still be really, really important to report.

Great. So this person had an ovary and fallopian tube removed at age 23 from stage 1 ovarian cancer. And the question is, can-- is it possible to successfully get pregnant with one ovary?

Absolutely. Once-- what people usually think is like, oh, if I have two ovaries, I am ovulating one month on one side and one month on the other side. If you have one ovary removed, then you will ovulate usually every month from the one ovary remaining. And you still have a fallopian tube. And so that egg can be caught by the tube and pulled in. And so you should be able to conceive. If you have a delay in conceiving, then that's something that you'd want to talk to your gynecologist about as well.

Another question from an ovarian cancer patient-- I had a genetic test done a few years ago. And it came back negative insufficient testing it says. Should another test be performed?

It may make sense. I don't know the specifics of why it would say insufficient, or if it was just not a genetic hereditary condition. Things have changed over the last five to 10 years for sure. And patients would have gotten testing much earlier. We're now doing a full range of a panel of testing of many, many different genes beyond just the BRCA1 and 2 that we traditionally used to think of. So seeing cancer genetics, which is a really important group of doctors and genetic counselors, may help you decide if you have to get retested.

And Dr. Lee--

I would really like to emphasize that one of the saddest things that I see is when somebody comes in and they're young. And I have a patient who was diagnosed with colon cancer in her 40s. And I've been seeing her for several years. And then, she, at her last visit, said, oh, I was diagnosed with colon cancer. And now, I found out that all of these relatives in my family had also had colon cancer.

And so knowing your family history, pinning people down to like those early cancers, those patterns across generations, helps us be aware and get that genetic testing that is now much more readily available, test for much more than just BRCA, and is becoming more and more affordable. And the things that insurance covers for is actually those indications are expanded.

So somebody who's a breast cancer survivor who was very young when they were diagnosed but is a survivor of 25 years may not even be seeing their oncologist anymore. And so it may not be on their radar. So really talking to your family, getting your family history teased out is a really important preventative way of finding out if you're at risk for certain things, which would change your timeline of getting the screening test that you need.

Yeah. I think that's a really, really important point. And it's a difficult conversation for some folks to have. But it is an important conversation and certainly could be a lifesaver. So another question from a viewer-- is combination HRT safe to take after a total hysterectomy to remove estrogen positive ovarian cancer?

Is combination estrogen hormone is a--

It's combination HRT.

So I think there's a couple of different things. Obviously, hormone replacement therapy, there's usually two components, estrogen and progesterone. Sometimes, hormone replacement therapy is given and discussed with your doctor because of menopausal symptoms. And so that's a separate question.

When we're using hormone replacement or hormones to tackle somebody who's had a history of ovarian cancer, it really depends on their tumor type and what the estrogen and progesterone receptors are. So that's usually very tailored to know what your cancer type was and why. And definitely there are types where we do use that as a more maintenance. But it's very specific. So I would say probably talking to your doctor to clarify that a little bit.

Another question from a viewer-- can taking birth control help prevent ovarian cancer?

Yes.

That's a great question.

[LAUGHTER]

Can you tell how excited we are about this topic?

It absolutely can. More than five years of use decreases your risk of ovarian cancer by 40%. So that's a really good way to get the benefit of birth control but also prevent ovarian cancer and uterine cancer.

And why is that?

Also important to know-- sorry to jump in, because--

No, go ahead.

I'm really excited about that topic. But even for patients who are BRCA mutation carriers, OCP use can actually be very protective. And it is recommended, because people are often fearful of breast cancer risk. But breast cancer is something we can screen for. We have multiple ways. And ovarian cancer, we can't screen for. So oral contraceptive use for our hereditary mutation carriers is very, very important.

And why is that so successful?

Oh, the birth control pills?

Yeah.

So there's a lot of different reasons. People used to think somehow it stopped ovulation, and that was the only way, because if you were on birth control pills, you did not ovulate as much. So there wasn't as much initial trauma to the ovary itself. So there are probably a lot of different factors.

Hormonal changes, we think that progesterone may be protective against ovarian cancer and may cause some quieting of ovarian cells. So there's a lot of different mechanisms that people have studied. So we don't know all of them. But I think it's really important to think of just the epidemiologic data that we know about how successful that can be.

Another viewer who wants to know if you can see cysts on the labia. And her comment is that she's prone to cysts.

Yeah. You can see this on the labia. They can be collections of normal waxy material or fluid. And they, usually cystic lesions on the vulva don't make us suspect cancer, but depends on if it resolves with drainage, and if it's uncomfortable, or something like that. You may want it removed. But typically, a fluid collection or a collection or a little ball on the vulva is not how vulvar cancer presents. Vulvar cancer usually presents with a thickening and an area that's irregular and may bleed to touch and be really irritated and itchy in that way.

And I would imagine if there's any doubt in your mind, it's probably just a good idea to contact your physician and well worth it to get it checked out. Now, another viewer question -- does ovarian cancer and endometriosis have any link?

Yeah. So just like we talked about briefly before that women who do have a history of endometriosis do have a slightly higher risk than the general population. It's not so high that everyone who has endometriosis needs to be overly fearful. But if you've gotten a diagnosis of endometriosis because of a surgery that's been done, which is how we get diagnose it, it's just really important to stay with your gynecologist to know if there's any follow-up needed for cysts. If there's symptoms that are changing and persistent, it may require more of a workup. So I think it's important to know that as a baseline.

And I know we've already touched on this one. But I think it's important. Can we talk about some of the typical symptoms for gynecologic cancers? What should people be aware of?

I would say that there's two categories. One are red flags, and one are subtle. And so the red flags are bleeding after menopause. Any bleeding from the vagina, bladder, rectum-- you're not sure after menopause-- that needs an evaluation in the office. The other red flag sign, I would say, is bleeding after any kind of contact on the cervix. So for those people who have vaginal intercourse for somebody who is exercising and notices some bleeding after a rigorous exercise or after an examination or something like that, that's something that needs evaluation as well.

The subtle signs-- unfortunately, there's so much overlap between what is normal, what maybe more of a gastrointestinal process-- so bloating, feeling full all the time, pelvic pressure, pain, discomfort, sometimes discharge that isn't resolving, changes in your vulvar skin like we talked about before, and also changes in your cycles that we talked about.

I agree. I think one of the issues is that because those symptoms are so common and especially maybe after menopause as well, one of the things that researchers have looked at is like, well, what makes those symptoms? So these symptoms are new and different, and they last. And they're persistent and repetitive for a few weeks. And they're very different from your symptoms before. And it's not just like, oh, I get bloating when I've enjoyed a really good meal. Every month this happens, or something changes.

Then, those new different persistent symptoms, getting an answer to that. And if you don't feel comfortable with the answer saying, like, I don't think it's my GI system, or I don't-- just making sure you included your gynecologist as part of your workup, because they'll be more fit to be able to think about like, oh, what are the other things that we could think about as well, and include things like ovarian cancer, fallopian tube cancer, in their differential of what they're thinking about, and may-- doctors, typically, they do an exam and then decide that you may need other testing based on their exam.

We're about out of time. But there's a couple of things I really want to get to before we leave the show. And Dr. Siddiqui, let's start with you. Can you talk about current screening options that patients might have? I know we've already touched on it. But I think it's good just to reiterate what's available.

So pap and HPV testing are actually the predominant way that we screen for cervical cancer. Ovarian cancer, uterine cancer, fallopian tube cancer-- those don't really have screening tests. The most important thing is to stay within the guidelines of your age and within your risk factor history, staying on top of getting a pap smear, which is done in an office collecting cells from the cervix to look at and see if they were precancerous as well as collecting for the high risk strains of HPV.

These types of tests are not done in an emergency room or an urgent care center. You may have a speculum, which is a device used to collect that, a speculum exam for other reasons, but not for a pap smear. So make sure you can see or you have a letter from your doctor saying you had a recent pap smear. A lot of our patients go from system to system or maybe access a couple of different clinic sites. So you really want to make sure you're staying on top of that.

And to finish it off, I'm going to let both of you talk about this one. But we have a great graphic that Carmine put together for this. Thank you, Carmine in the other room. Let's go ahead run that. And we can talk about risk factors and prevention tips. And this sums it all up. And I'll let both of you jump in on this one.

I would say get vaccinated. If--

That's what I was going to say.

--you get your kids vaccinated, your boys and girls, everyone should have HPV vaccination. It decreases their risk of cervical and anogenital cancers by 90%. And that is for boys and girls. It also decreases the risk of head and neck cancers that are related to HPV. So I think HPV, and pap testing, and then the HPV vaccine for sure.

I'm looking through this. I don't think we've talked-- touched a little bit on obesity. So I think any of us who carry extra weight are at risk for obesity related cancers. And for us, uterine cancer is the one that we see the most often. And it doesn't mean to be in any way like blaming anyone for their weight or their activity level. But just knowing that this may be something that we need to focus in on to make sure that you may think of it as a risk factor, and one that we might be able to impact by increasing physical activity, really paying attention to diet quality. So that is just an overall risk factor that it is really important.

Great. And that sums it up really well. I think, first of all, you two did a fantastic job. I know you're very, very busy. So carving this time out of your day isn't always easy. We really appreciate it. And clearly, the viewers did as well. So thanks for doing that.

Also, thank you to those of you who watched and participated in the program today. Great questions. Please remember to check out our Facebook page for our schedule of programs that are coming up in the future. Make an appointment. Make sure you go online, uchicagomedicine.org. Or you can give us a call at 888-824-0200. Thanks again for being with us today. And I hope everyone has a great week.