Vulvar Cancer: Causes, Symptoms and Treatment

Podcast Transcript

Erica Newlin, MD:

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Welcome to Ob/Gyn time, a Cleveland Clinic podcast covering all things obstetrics and gynecology. These podcast episodes are intended to help you better understand your health, leaving you feeling empowered to live your best. We hope you enjoy today's episode.

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Hi everyone. I'm your host, Dr. Erica Newlin. Welcome to Ob/Gyn Time. During this season, we are focusing on topics related to gynecologic oncology, meaning cancers of the female reproductive organs. On this episode, I'd like to welcome back Dr. Sudha Amarnath and Lindsey Beffa, who will be talking to us about vulvar cancer. Dr. Amarnath, Dr. Beffa, thanks so much for joining me again on the podcast.

Sudha Amarnath, MD:

Thanks for having us again.

Lindsey Beffa, MD:

Yeah, thanks.

Erica Newlin, MD:

For those who haven't listened to our cervical cancer episode, can you tell us about your role in the Cleveland Clinic and a little about your background?

Lindsey Beffa, MD:

So I'm Dr. Lindsey Beffa, I'm a gynecologic oncologist, so I specialize in the surgical management and also the treatment of with systemic therapy, so whether that's chemotherapy, immune therapy, targeted therapies for cancers of the female reproductive tract.

Sudha Amarnath, MD:

And I'm Sudha Amarnath. I am a radiation oncologist here at the clinic, and I specialize primarily in cancers of the pelvis, so both colorectal cancers and gynecologic cancers, and the use of radiation to help treat those cancers.

Erica Newlin, MD:

Let's start by clarifying anatomy. What parts are we referring to when we say vulva?

Lindsey Beffa, MD:

I think we can generally say the skin outside the vagina. So the vulva has many different components, but any of the skin outside of the vagina, we would consider as a whole of the vulva, including the labia, the clitoris, the perineum, which is the skin between the vagina and the anus, all of that is considered the vulva.

Erica Newlin, MD:

Great. And then, in our prior episodes about cervical cancer and about GYN cancer screening, we discussed the role of human papillomavirus, or HPV in cancer development. What role does HPV play in vulvar cancer?

Lindsey Beffa, MD:

So HPV also plays a large role in vulvar cancer. It increases the risk of vulvar cancer. Different from cervical cancer, there's also a significant portion of patients who have vulvar cancer that is not HPV related, so it is not the only risk factor for vulvar cancer.

Erica Newlin, MD:

So what types of vulvar cancer are there?

Lindsey Beffa, MD:

Yeah, so there's a few different types. There are those that are related to HPV, there are cancers that are related to different skin diseases, something called lichen sclerosis, which is a very common skin change as women go through menopause, can increase the risk of vulvar cancer. But there are also less common cancers, like melanoma of the vulva, as well as cancers of the Bartholin gland, which is just kind of at the bottom of the vagina, that we consider vulvar cancer as well.

Sudha Amarnath, MD:

And so often when patients are asking me how often they should see their gynecologist, since our pap screening has spread out a little bit, I still say it's important to have regular exams, because-

Erica Newlin, MD:

... for most people, no one is looking down there.

Lindsey Beffa, MD:

I could not agree more. I tell patients, and you know, anyone who will listen, still go see your provider, who's going to look at the skin on your vulva once a year. That would be our general recommendation, so that somebody is paying attention.

Sudha Amarnath, MD:

Yeah. And I think to that point, you know, when we talked about cervical cancer, you know, we generally think of that as the cancer of younger women. Vulvar cancer tends to affect older women who are oftentimes outside of that age range, as you mentioned, where they're going through routine pap and HPV screening, and so quite often no one is ever looking down there for those women.

Erica Newlin, MD:

And then who may be more at risk for developing vulvar cancer? You touched on that a little bit.

Lindsey Beffa, MD:

Some of that is similar to our last episode on cervical cancer. People who have had positive HPV testing in the past, genital warts or some evidence of HPV disease in their lifetime, people who have a suppressed immune system, so whether that's from medications, steroids, HIV infection, lots of different options there. Patients who have the skin change, like I mentioned, called lichen sclerosis. Those are the most common.

Erica Newlin, MD:

Does family history ever matter with vulvar cancer?

Lindsey Beffa, MD:

No. Not typically with vulvar cancer.

Erica Newlin, MD:

And then what symptoms would raise suspicion for vulvar cancer?

Lindsey Beffa, MD:

Yeah. So any new, what we say, lumps or bumps that are different on the skin, that should be, somebody should go see their doctor to be evaluated. So any new nodules, masses. But the other more subtle findings sometimes are just persistent itching. There's one specific spot, and it's always that spot, and it just keeps itching. That is something that we see very commonly. Of course, any abnormal bleeding, difficulty all of a sudden with urination or peeing, same thing with having a bowel movement, that sometimes can clue people in that there's, something just not quite right.

Erica Newlin, MD:

And I see a lot of patients in my general clinic who have been itching for years, and maybe saw different providers, didn't get an answer, so I would encourage patients to really, if you're having persistent symptoms, it's not always a benign thing.

Lindsey Beffa, MD:

Absolutely.

Erica Newlin, MD:

And then, on that topic, I talk a lot with patients about self exams with a mirror, particularly in my patients that have skin conditions like lichen sclerosis. What would you tell people to look out for if they're doing a self exam?

Lindsey Beffa, MD:

Yeah. I think that that is great advice because every vulva is different, and there is so many different variations of normal. So first, understanding what your normal is, what your normal anatomy looks like, and that way, if there's any change, a new small open spot or an open wound, spot that's itching that looks a little bit different color, any dark, kind of almost like a new freckle or mole that pops up, those are things that I would want you to see somebody about.

Erica Newlin, MD:

Yeah, and I've noticed sometimes these changes can be subtle, so definitely ... like no one is going to think that you're silly for going to your doctor.

Lindsey Beffa, MD:

Absolutely.

Erica Newlin, MD:

And can you describe what we mean by vulvar dysplasia?

Lindsey Beffa, MD:

Yeah. I think dysplasia is another term that sometimes we will use in the global setting as pre-cancer. So it's just the changes in the skin that, that ultimately can increase your risk of a cancer. Again, for vulvar disease or dysplasia, there are different kinds of dysplasia, and different causes. The HPV types versus the types from lichen sclerosis look different under the microscope, but they're all considered pre-cancer or dysplasia.

Erica Newlin, MD:

And then how would we diagnosis a dysplasia?

Lindsey Beffa, MD:

So to diagnose dysplasia, you have to have something to look at under the microscope, so that would require a biopsy.

Erica Newlin, MD:

And many times these can be done in the office.

Lindsey Beffa, MD:

They can. You know, I always tell people, of course they're not comfortable, but we can give people medication, we can numb the area so that they don't feel the biopsy, so that we can get an answer and help them move forward in the right way.

Erica Newlin, MD:

And what could someone expect as a next step if they are diagnosed with a vulvar dysplasia?

Lindsey Beffa, MD:

So for vulvar dysplasia, it ... a lot of that depends a little bit on the exam and the location. There are different treatment options. Surgical treatment options are most common, but sometimes that's not the right answer for everyone. So sometimes there are things like different creams that people could use, but specifically for dysplasia, also laser treatments. So there's a few different options.

Erica Newlin, MD:

And then how is vulvar cancer diagnosed?

Lindsey Beffa, MD:

Vulvar cancer is also diagnosed with a biopsy. So something to look at under the microscope to show that that is a cancer versus dysplasia.

Erica Newlin, MD:

And if someone has received that diagnosis of vulvar cancer and is preparing for their visit with a GYN oncologist, what could they expect for next steps of work up?

Lindsey Beffa, MD:

Yeah. So similar to cervical cancer, usually for vulvar cancer we also are doing additional imaging, so something like potentially an MRI, a CAT scan, a PET scan, something like that, an exam so that we can see exactly what this cancer looks like and how big it is, is it close to any important structures. We also check for lymph nodes for vulvar cancer, in the groin or basically the crease of the leg, and those are things that are pretty standard, that somebody could expect when they see a GYN oncologist for the first time.

Erica Newlin, MD:

Great. And we've touched on cancer staging in previous episodes, but in particular to vulvar cancer, how is vulvar cancer staged?

Lindsey Beffa, MD:

Yeah. So vulvar cancer is staged, again, in general, where is the cancer, how big is it, what else is it involving? So stage one, is limited to the vulva, stage two is starting to include other nearby structures. So when we think of the vulva, things that we might include in that are things like the urethra, where we pee, the vagina, or the anus, and where we have bowel movements. And then when we start to think about our lymph nodes involved, including the lymph nodes in the crease of the leg or groin lymph nodes, that would make somebody a stage three, and then a stage four is if the cancer is a little bit further spread, including far away and other organs.

Erica Newlin, MD:

And can you discuss when surgical treatment of vulvar cancer would be the recommended treatment?

Lindsey Beffa, MD:

So vulvar cancers can be a little tricky, because of its proximity to other important structures, like I mentioned, like the urethra and like the anus. So there is not always an easy answer for who should get surgery, because sometimes it can be a really small cancer, but the surgery might require somebody to have a colostomy, or a bag that they would need to have bowel movements out of their skin on their abdomen. So that's where it really depends on the location, how big it is. We also often will take out lymph nodes in the crease of the leg. So that, to be honest, it really can vary for vulvar cancer.

Erica Newlin, MD:

And you've touched on this a little bit, but let's recap. What are lymph nodes and how are they assessed, and when do they need to be removed?

Lindsey Beffa, MD:

Yeah. So lymph nodes, you can almost think about them like the filters of the body. So we have lymph nodes all over our entire body, and for the vulvar, the skin outside the vagina, the lymph nodes that primarily drain that area of the body are in the crease of our leg, or the groin, as we call it. And so, on exam, if somebody has a vulvar cancer, we're always palpating to see if we can feel any enlarged lymph nodes, we're using our imaging to see if there's any abnormalities on the imaging that make us worry could that cancer have gotten into one of those, or multiple of the lymph nodes. And then, ultimately, during surgery, sometimes we take out a few or many of the lymph nodes in the groin.

Erica Newlin, MD:

How do you decide which lymph nodes to take out?

Lindsey Beffa, MD:

Yeah. So a little bit depends on how big is their cancer, where is their cancer, what do the imaging techniques, what does that tell us and are there any abnormalities on the imaging. Sometimes we can use special dye to almost lead us to the lymph node that catches the dye, or that would catch the cancer cells first, something called a sentinel lymph node biopsy. And there's a few different techniques to do that, but allows us to take out fewer lymph nodes, and sometimes that's not the right answer, and so we have to take out more lymph nodes there in the crease of someone's leg, either on one side or both sides, depending on the specific situation.

Erica Newlin, MD:

And then in people who have completed surgical resection of their vulvar cancer, how do you decide who needs additional treatment?

Sudha Amarnath, MD:

So, you know, this kind of answer that varies depending on what the final pathology from the surgery shows. And so what that basically looks like, what the cancer looks like under the microscope. So we care a lot about what kind of cancer this is, you know, how deep does that cancer go into those tissues, are there lymph nodes that are involved, did it spread into some of the kind of other nearby tissues, what does the margin status look like, so do we see any cancer cells at the edge of the specimen that was kind of removed at the time of surgery.

And so we look at all of those things in our tumor board, which is made up of a group of specialists who take care of patients with vulvar cancer, and then we decide if those patients have risk factors that would put them at an increased risk of the cancer coming back, and that helps us determine if they need additional treatment.

Erica Newlin, MD:

What kind of additional treatments might we be talking about?

Sudha Amarnath, MD:

Yeah. So additional treatment can be sometimes be further surgery. So if there is a margin that showed that there was still some cancer cells in there. If, let's say Dr. Beffa had done the surgery and we see them on the pathology report, if there is more space to go back in and remove more tissue, then she might go in and do that. If there is no more space to do that, she's kind of done as much as is possible surgically without removing other organs, we might think about radiation and/or chemotherapy in that setting. And if there are lymph nodes involved, then generally radiation and/or chemotherapy are also part of that treatment plan.

Erica Newlin, MD:

And then what does radiation look like-

Erica Newlin, MD:

... for patients with vulvar cancer?

Sudha Amarnath, MD:

So you know, I don't know like to sugarcoat things. Radiation for vulvar cancer is tough. The vulva is a very sensitive area that has a lot of nerve endings, and so when we think about radiation, which is basically using very high energy X-rays to treat those tissues that are at risk for harboring microscopic cancer cells, we oftentimes have to treat that vulvar tissue that is kind of left after the surgery. And so ultimately, from a side effect standpoint, a lot of our patients will get what we call radiation dermatitis, which is basically kind of like a radiation burn that can be quite uncomfortable and even painful for our patients as they're going through treatment.

Ultimately, we do a lot with our patients to help keep them as comfortable as they go through the treatment, but vulvar cancer radiation is certainly a tough treatment, and so again, finding providers who do this frequently and can make sure that our patients are able to get through all of the treatment that is needed to prevent the cancer from coming back, especially without any treatment breaks,  is really, really important for the patients as they're going through it.

Radiation itself is generally about five to six weeks of daily treatment, Monday through Friday, and again, depending on what the pathology shows, from a surgery, we'll oftentimes treat different areas of the pelvis, the groin areas, or that crease between the leg, and the vulvar area itself.

Erica Newlin, MD:

Sure. And then what about chemotherapy? What does that usually look like for vulvar cancer?

Lindsey Beffa, MD:

Yeah. So sometimes, again, depending on the exact stage and situation, sometimes we add, similar to cervical cancer, one time per week chemotherapy in addition to the radiation. So patients are coming in for a few hours one day a week for the chemotherapy as well. Other times, if the vulvar cancer has spread to other organs, let's say the lungs, the liver, something like that, then oftentimes we're using multiple different kinds of chemotherapy to treat somebody in that setting.

Sudha Amarnath, MD:

We use radiation and/or chemotherapy in the setting of patients who have had surgery and have some of those risk factors microscopically after surgery, but as Dr. Beffa had kind of previously alluded to, sometimes our patients have cancers that are involving other organs nearby, like the urethra or the anus, where surgery is a possibility, but it would often require removal of other organs that could ultimately really change the quality of life.

Lindsey Beffa, MD:

Mm-hmm.

Sudha Amarnath, MD:

For our patients in the long term. And so in those circumstances, we will often think about using chemo and radiation as the primary treatment and the curative treatment for those patients so that they can retain their organs and that function in the long term.

Erica Newlin, MD:

And then, for people who have completed their treatment for their vulvar cancer, what can they expect surveillance to look like?

Lindsey Beffa, MD:

Yeah. So surveillance is coming in, especially in the short term, to see somebody in the GYN oncology team and Dr. Amarnath's team. We often, shortly after, will do some type of imaging study, and then long term, a lot of it is based on exam. So doing exams every few months for the first couple of years so that we can really keep an eye on the skin, make sure that we don't see any areas that we're worried the cancer could be coming back, that's the most common.

Erica Newlin, MD:

And we'll have another episode later in the season about survivorship and following patients in the long term for the side effects that you've mentioned.

Sudha Amarnath, MD:

Yeah. I think, you know, certainly with vulvar cancer, and we touched on this briefly in our cervical cancer episode, because you know, that skin and that area is so delicate, in patients, we really want to make sure that we're being proactive trying to prevent that tissue from sticking together after either surgery or radiation, because it's really important for patients to be able to have those exams in the long term. So again, just being really proactive in kind of making recommendations, usually we're using things like vaginal dilators, sometimes even estrogen creams and things like that to help make sure that keeping those tissues from really kind of sticking together long term, which can be very painful for patients-

Erica Newlin, MD:

Mm-hmm.

Sudha Amarnath, MD:

As well as affect surveillance.

Erica Newlin, MD:

What would you recommend or say to someone newly diagnosed with vulvar cancer?

Lindsey Beffa, MD:

I would say, we may sound like broken records from our cervical cancer episode, but the same thing truly applies. Finding a team who is experienced at treating vulvar cancer is incredibly important. You know, like Dr. Amarnath mentioned too, try to prevent or be proactive about the possible side effects, whether that's from surgery, radiation, chemotherapy, all of the above. And then, having a team that you trust and that you are willing to come follow up with long term, I think also is important. Similar to cervical cancer, the anatomy and tissue can really change after treatment of vulvar cancer, whether that's from surgery, radiation, any of it. And so I think having a team that, again, is experienced and able to follow someone who's had vulvar cancer in the past, closely, and just has an idea of what to look out for is incredibly important.

Sudha Amarnath, MD:

Yeah. I would just add, you know, I think men kind of look at their external genitalia all the time. We, as women, don't do that nearly as frequently. And I love your advice for women to, you know, use a mirror to look at that area. But I think because this affects a lot of older women who, even more so, generationally, never talked about their gynecologic organs, let alone their vulva. I think there's oftentimes a lot of embarrassment that our patients will feel about seeking a provider in the first place, and then ultimately kind of undergoing the treatment.

And so, again, being at a place where you have providers who will listen to you, who make you feel very comfortable, and the whole team is well-versed in taking care of patients with vulvar cancer, is so incredibly important.

Erica Newlin, MD:

Are there any promising treatments on the forefront that may change how we treat vulvar cancer?

Lindsey Beffa, MD:

You know, it's tricky because vulvar cancer is absolutely considered a rare disease or rare cancer, and unfortunately, that oftentimes means that there's not a lot of studies or trials that are done in that specific cancer type. So a lot of our treatments actually are based from other cancers, like cervical cancer, and we use similar treatments for vulvar cancer. So my hope is, over time, number one, that we will have more trials specific to vulvar cancer, because it is a different disease than cervical cancer, but also that potentially some of the other newer targeted therapy, or immune therapy, if we could find what patients benefit the most in ... from vulvar cancer with those treatments, that would be fantastic.

Sudha Amarnath, MD:

Yeah. I think Dr. Beffa really said it very well. We do know now, we have more recent studies that show that patients who happen to have cancers that were caused by HPV do tend to respond better to treatments than those patients who have non-HPV related cancers. And so I think just a lot more work and money really hopefully needs to go into the study of these vulvar cancers, and especially the ones where we really can't extrapolate and take information from other cancers. You know, most cervical cancer is HPV related, a lot of vulvar cancer isn't, and so, you know, I think that would be a major goal for Dr. Beffa and myself, is to see more resources invested into really kind of studying those patients who don't fall into these other kind of more common cancer categories.

Erica Newlin, MD:

For sure. Well, thank you so much for joining us.

Lindsey Beffa, MD:

Thank you.

Sudha Amarnath, MD:

Thanks for having us.

Erica Newlin, MD:

Thank you for listening to this episode of Ob/Gyn Time. We hope you enjoyed the podcast. To make sure you never miss an episode, subscribe wherever you get your podcasts or visit ClevelandClinic.org/ObGynTime.

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