Survivorship: Life After Gynecologic Cancer

Podcast Transcript

Erica Newlin, MD:

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.

Hi everyone. I'm your host, Dr. Erica Newlin. Welcome to Ob/Gyn Time. During this season, we're focusing on topics related to gynecologic oncology, meaning cancers of the female reproductive organs. On this episode, I'd like to welcome Lisa Rauh-Benoit, MD and Suzanne Surovec, CNP, who will be talking to us about survivorship and gynecologic cancers. Dr. Rauh-Benoit, Suzanne, thanks so much for joining me on the podcast.

Suzanne Surovec, CNP:

Thanks for having us.

Lisa Rauh-Benoit, MD:

Thank you.

Erica Newlin, MD:

Can you tell us a little about your role in the Cleveland Clinic and a little about your background?

Lisa Rauh-Benoit, MD:

Sure. So I'm a GYN oncologist. I've been with the clinic for about two and a half years, and I work primarily out of the Akron office, but happy to be part of the team. My background, always been really interested in women's health, was definitely marked for Ob/Gyn from an early, early time in my residency, but really fell in love with our oncology patients. They're just an incredible group of human beings and so resilient and funny. And you know, I think I learned as much from them as they learned from me, and it's just a privilege to get to care for them.

Suzanne Surovec, CNP:

And I'm Suzanne Surovec. I'm a nurse practitioner. I've been a nurse practitioner since 2007. In my past nursing roles, I got very interested in women's health, women's advocacy, adolescent health. I was an ER nurse. I was a sexual assault nurse examiner, so that kind of got me into women's advocacy, as most of our patients unfortunately were female.

And so when I went back for my nurse practitioner, I decided to go the women's health route, which led me through benign gynecology and finally to GYN oncology which I love. And as Lisa said, the patients are just so strong and resilient, and we learn so much from them. And you know, medically challenging, but have so many psychosocial needs that we can help provide for, so I really love this practice. I've been at Hillcrest and Main Campus and now Sandusky with the clinic.

Erica Newlin, MD:

Great. And can you describe what we mean when we use the term survivorship?

Suzanne Surovec, CNP:

So survivorship is definitely a term that most people that are involved with cancer and cancer research, have had cancer themselves, have heard. Really, there's a lot of different ways to think about the definition, but the definition with National Cancer Institute is that survivorship focuses on the health and wellbeing of a person with cancer from the time of diagnosis until the end of their life.

It can include their physical, mental, emotional, social, and financial effects of cancer, which does begin at diagnosis and continues through treatment and beyond. This experience also includes issues related to follow-up care, including, like, their regular health screenings, wellness checkups, diet, exercise, weight management, things like smoking cessation. It deals with late effects of treatment, cancer recurrence, and quality of life. And their family and friends are also part of this experience.

At the clinic, and I know in many centers, we do a survivorship visit at the end of their treatment, which focuses on all those issues.

Erica Newlin, MD:

Perfect. And in prior cancer-specific episodes, we've briefly discussed surveillance for each type of gynecologic cancer, but speaking generally, what can someone expect at a surveillance visit?

Suzanne Surovec, CNP:

So a surveillance visit, which would occur after the survivorship visit, where we identify some of the psychosocial and physical needs, the surveillance visit's primary focus is on their physical health and recurrence of the cancer. But we do also touch on survivorship issues at that visit.

Patients will get an update of their medical history and any medication changes since we've seen them. We'd be asking them questions regarding if they're having signs of recurrence of the cancer, again, questions regarding their survivorship issues. They would get a physical exam, which often includes a pelvic exam.

You know, we're looking for any physical signs of recurrence of the cancer. We would review any appropriate lab testing or imaging. And routine GYN screenings like bone densities, mammograms, those types of things are followed up on. And then a plan for their follow-up visit.

Erica Newlin, MD:

And then I recognize this is a rather broad question, but what symptoms should survivors of gynecologic cancers look out for?

Suzanne Surovec, CNP:

So some symptoms that they can look for, you know, because our tumors are solid tumors, would be things that if the cancer has come back in their chest, abdomen, or pelvis primarily, that would be things like lack of appetite, becoming full quickly, which we call early satiety, cough, chest pain, shortness of breath, abdominal pain, bowel or bladder disturbances, vaginal bleeding, or if it's a vulvar condition, any new lesions.

And when we say all these things, we mean anything persistent and worsening, like three weeks or longer. We all get a little stomach pain. We all get a little cough here and there. But if the patient is having those kind of symptoms three weeks or longer, we definitely encourage them to call us at the office, and we can bring them in for a visit and investigate.

Erica Newlin, MD:

And then how might blood work and imaging play into gynecologic cancer surveillance?

Lisa Rauh-Benoit, MD:

Yeah. Absolutely. And I will say, I always tell patients, you know, our guidelines for the most part are fairly broad in how we follow patients, and so, you know, we go through the guidelines and what is recommended, and then, we sort of meet in the middle-

Lisa Rauh-Benoit, MD:

... and we can talk more specifically about that. But for some patients, for instance, imaging can be very anxiety provoking-

Suzanne Surovec, CNP:

Mm-hmm.

Lisa Rauh-Benoit, MD:

... and if it's not really strongly recommended by our guidelines, then if they're more comfortable, you know, omitting that, unless, we just talked about how these surveillance visits kind of function, unless something is flagged on a surveillance visit, you know, I'm comfortable with that.

So that being said, I can talk a little bit more specifically about specific subtypes of gynecologic cancer and kind of the general framework for how we use things beyond interview and physical exam. So when you're thinking about uterine cancer, and really, we're talking about two different types of uterine cancer. We're talking about endometrial cancers, which arise in the lining of the uterus, and these are by far and away the most common of the two types.

You know, a vast majority of these patients have early stage disease, and generally we don't use routine imagings for these patients. Occasionally, if they'd had any preoperative blood work, specifically a tumor marker, we most commonly use the cancer antigen 125, or you'll hear us talk about CA125, if that was elevated at diagnosis, then we can consider checking that when they come in for their surveillance visits.

Outside of that, we generally rely on how the patient's feeling, and any changes in physical exam would then spark a desire to sort of follow up with imaging.

The other type of uterine cancer that we do see is sarcoma, which arises in the muscle layer of the uterus, and these are far more rare. And actually, when you look at our guidelines for follow-up in addition to, again, everything Suzanne just referenced, this is the group of patients where actually imaging is more strictly prescribed in the follow-up period. In fact, you know, and I think about the different tumor types, this is really the only one they strongly recommend routine imaging in the follow-up period.

There is no great blood test for sarcoma. Sometimes patients are referred to us with a pelvic mass, and the referring provider may have already drawn a CA125. And we could certainly follow that, although that's not part of kind of the routine workup or follow-up for these patients.

Shifting gears, thinking about ovarian cancer, most of these patients are going to have preoperative or pretreatment CA125, and sometimes they'll also have other tumor markers, including a CEA or a CA 19-9. These are all different blood tests we can order. And again, these can potentially be elevated, especially in more atypical types of ovarian cancer that are, for instance, mucinous in nature.

So again, the crux of our follow-up is talking to patients, examining patients, really listening to their concerns or any changes they've experienced. But we do use tumor markers more, I think, regularly in that ovarian cancer population.

Erica Newlin, MD:

Mm-hmm.

Lisa Rauh-Benoit, MD:

I guess this highlights the point that, in general, we'll only follow blood work like tumor markers if it was elevated when they had their diagnosis. And again, for ovarian cancer, and I think this surprises a lot of patients, there's actually no prescribed imaging follow-up.

And so, you know, we can be fairly conservative here, and I tell patients all the time, and this is supported by data, we're more likely to find recurrences sooner, but we're not more likely to change their prognosis if we pick up the recurrence sooner.

And so we generally don't routinely image patients, again, outside of, if they have a normal exam, they feel well, and blood work looks normal, we generally wouldn't add imaging too. That being said, as I referenced that first comment, if patients are very anxious and want to feel they're doing everything, we have flexibility in how our guidelines are written to meet those patients where they're at.

The next two we'll kind of put together, well, three, I guess, cervical, vulvar, and vaginal cancers. They're predominantly driven by the human papillomavirus, and because particularly vaginal and vulvar cancer are quite rare, everything we do we sort of just follow our cervical cancer guidelines.

And so, you know, for early stage cancers that were surgically resected, again, the crux of it is talking to patients, examining them, and really listening to their concerns. There, at this time, is no blood test for these patients.

For more advanced tumors, those treated particularly with curative radiation, they usually look at a PET scan s- which is a specific type of CT scan that looks for basically how... We look for metabolic activity. And the way I think of it as, you know, cancer grows faster than the rest of our body, and we're looking for these spots of the body that take up more energy than others. And so they'll generally get one at the completion of radiation to demonstrate that we've reached a remission or a point where we don't see evidence of cancer.

And then in more advanced patients, again, we have flexibility. There's no prescribed time you'd have to follow up with imaging. It's all based on, is the patient tolerating treatment? How are they feeling? And what is that exam like in comparison?

The last thing I'll mention, and this is an extremely rare cancer, would be gestational trophoblastic neoplasia, which is this very odd cancer that arises in placental or kind of pregnancy tissue. And there is a pretty prescribed role for basically following the pregnancy hormone. But those are incredibly rare cancers and probably not something most people think of when they think of what we do in the GYN oncology world.

Erica Newlin, MD:

Sure. And then many patients who may have had their ovaries removed during surgical treatment of their cancer may experience sudden onset of symptoms of menopause. In our last season, we went into a lot of detail about hormonal and non-hormonal treatments for menopause symptoms. But focusing on cancer-specific risk, which people may or may not be candidates for hormonal treatment?

Lisa Rauh-Benoit, MD:

Yeah. This is a great question, and we spend a lot of our time, because menopausal symptoms are really impactful on quality of life, and so kind of broadly when I think about who is and who is not a candidate for hormone therapy, you know, anyone with an active cancer is generally not going to be a candidate for hormone replacement therapy, in part because when we replace hormones in the body, it makes us more apt to clot. And cancer is also a risk factor for blood clots, and so that really drastically increases that risk.

If they have a current blood clot retreating, again, that would be a contraindication. If someone is a smoker, this would really more, be more a case-by-case, but the prevailing evidence, and again, I'm not, you know, a menopause specialist, and if I have questions, I certainly refer to those who are, but you know, we really have to weigh the risks and benefits with those patients, because smoking is also a risk for blood clots.

A fair number of our patients developed cancers because they had mutations in their body that they inherited from parents and can pass down that put them at risk for other types of cancers, or they may have already had a specific type of cancer. So what really comes to mind is when we talk about our BRCA or our B-R-C-A patients, a lot of those patients may have h- already had breast cancer, and certain types of breast cancer are exquisitely sensitive to hormones. And so the prevailing wisdom is that they really shouldn't receive any, at least hormone, estrogen replacement therapy.

Suzanne Surovec, CNP:

Mm-hmm.

Lisa Rauh-Benoit, MD:

And then the other thing to think about is just the overall age of the patient. You know, generally we're not going to start someone who is many years past natural menopause on a hormone replacement therapy or an estrogen replacement, again, because the risks start to go up for that particular group of patients.

Suzanne, any other group of patients that you can think of?

Suzanne Surovec, CNP:

I think you covered them. Yeah.

Lisa Rauh-Benoit, MD:

Okay. Great. But as you can see, it's, it's not always black and white. These are often, you know, conversations with shared decision making. And luckily, we have some fantastic partners who are really expert in this area for the more complex, particularly our younger patients, right, because it's not just about symptoms. There are also long-term health implications of early menopause like bone health and cardiac health.

Erica Newlin, MD:

So it seems like a lot of the theme for survivorship care and just GYN care in general is it should be a lot of shared decision making and collaboration.

Lisa Rauh-Benoit, MD:

Absolutely.

Suzanne Surovec, CNP:

Yeah.

Lisa Rauh-Benoit, MD:

Absolutely. I agree 100%.

Erica Newlin, MD:

And we've talked previously a bit about lymph node removal in the pelvis. Can you refresh our memory on what the role of lymph nodes are?

Lisa Rauh-Benoit, MD:

Absolutely. I spend a lot of my time talking to patients about this.

Suzanne Surovec, CNP:

(laughs)

Lisa Rauh-Benoit, MD:

You know, so the way I describe it to the non-medical person is, you know, it's basically a system of sort of fatty-like tissue. It sort of mimics and follows the blood vessels in our body, and it serves multiple roles. One, it helps bring lymph, which is kind of that extra fluid we carry in our tissue, back into the bloodstream. And so it helps us minimize tissue edema and things like that.

It's also a place where our body investigates foreign things, so that could be a virus. It could be a bacterial infection, or it could be cancer cells. I often tell patients we've all had a sore throat, and we've all got that swelling in around our neck. And those are lymph nodes, and essentially, the body brought this foreign agent to the lymph node, and the immune system's investigating to produce antibodies and, and sort of respond to that foreign agent.

And I think the third way I think about lymph nodes is it's also kind of like a filtration system. Right? It's kind of where things go to be investigated, and that's why cancer cells can end up in them.

And so I think the last thing I think about it is, it is essentially a highway system. It's a way for cancer to spread itself outside its site of origin. So we can have lymph node involvement, and we essentially know that that cancer could show up in distant sites in the body because the lymph node system is essentially a connected highway system in the body.

Erica Newlin, MD:

What side effects might someone have if they've had a lymph node removal?

Lisa Rauh-Benoit, MD:

Yeah. So you know, definitely the most common thing is going to be chronic swelling. We call that edema or lymphedema in a limb. So you know, for breast cancer patients, that's going to be arms. Most of our dissections are, the lymph nodes of interest for us are inside the abdomen in the pelvis or in the groin, where we remove them for vulvar cancer, which is sort of where our torso meets our leg.

And so these patients can get pretty severe chronic swelling of the extremities. And I always tell patients this isn't you on a hot day at a concert needing to put your feet up at the end of the day. It's not something that's going get better with, you know, putting your feet up and sort of, resting for the day. It can be a chronic issue.

Some downstream effects of that is they can have problems like blistering of the skin. They can be at risk for infections in those limbs that, because the fluid's just kind of sitting there, and they're at risk for sort of these sort of long-term issues.

A more rare side effect of removing lymph nodes is something we call chylous ascites. So ascites is a medical word that just is kind of like extra fluid in the abdomen. Chyle is another word for the fluid that is carried through the lymph system. And so rarely, I haven't seen this often in my career, fortunately, you can kind of leak that into the abdomen. And these patients can be quite symptomatic, and that can be a difficult issue to manage.

Erica Newlin, MD:

What kind of treatments are available for people experiencing these symptoms?

Lisa Rauh-Benoit, MD:

Sure. So again, the crux of it is a lot of it is supportive care. We would work closely with, you know, our lymphedema specialists. And so that can be sort of, you know, stockings or binding the leg, physical therapy, deep tissue massages to help encourage that fluid to leave the tissue along the physical therapy route as well.

There are more significant options, more like interventional options, which are not as commonly pursued, but it is possible, especially like in the case of chylous ascites, for instance, which is a break in that lymph chain in the abdomen, and they're spilling this fluid. Sometimes our colleagues in radiology are able to see where the leak is occurring, and through a minimally invasive radiologic procedure, essentially plug a cork in it. I don't have a better-

Erica Newlin, MD:

(laughs)

Lisa Rauh-Benoit, MD:

... way to describe it, but that's kind of what they do. But vast majority of our patients, it's going to be supportive care, physical therapy, binding of legs, massage, and other ways to stimulate those tissues.

Erica Newlin, MD:

And switching gears a little bit, what are the most common long-term effects of chemotherapies used for gynecologic cancers?

Suzanne Surovec, CNP:

So long-term effects of chemotherapies can often be seen as also effects that are during chemotherapy, but we definitely have ways to manage all of these, both during and beyond. And I just want to give a shout-out to our palliative medicine team that helps us quite a bit with helping patients that have symptoms and toxicities from their chemotherapy. They're often involved with us in helping to manage these things.

But long-term things that we ask patients about at our survivorship visits, fatigue. You know, a lot of times your stamina doesn't come back right away, whether it's because you were kind of more down and not as active during your chemo, or just the physiologic effects of the chemotherapy as your body's rebuilding.

So we really do encourage patients to stay active, increase their activity as much as they can. Sometimes we refer them to physical therapy if they're having any issues that we need to work around. And we know definitely that that does help with fatigue.

Neuropathy is another toxicity of chemotherapy, especially the taxanes. That can give you numbness and tingling in the fingers or toes. We do watch for this throughout treatment so that we're not giving, you know, very debilitating neuropathy to patients with dose adjustments, things like that. But moving forward, there's drugs that we can use to help with that, along with physical therapy can help with neuropathy.

Hair loss, obviously, during chemo, but even when it comes back, sometimes it's different, which patients aren't really happy about sometimes. Sometimes they love it. They're like, "Oh, I never had curly hair before-"

Erica Newlin, MD:

(laughs)

Suzanne Surovec, CNP:

"... and now I do." (laughs) So you know, that is something to kind of anticipate. Things like cisplatin and drugs like that can cause tinnitus, ringing in the ears. We do watch for that throughout treatment as well, and we want to make sure it gets not to a point where it's irreversible. But we would send to, you know, an ear, nose, and throat doctor for monitoring and evaluation.

Toxicities of chemo, you know, systemic ones like cardiac, lung, kidney, liver dysfunction, those can persist if there has been some toxicity through treatment. And we, again, are pulling in referrals to help us manage these patients, whether it's pulmonology, cardiology, that kind of thing.

Patients can get chemo brain, cognitive dysfunction. That happens often during chemo. You just kind of forget things. We tell patients to make lists and do Sudokus and anything that can kind of keep your mind active. That can persist beyond treatment. Usually it's reversible, and it might not get back 100%, but again, with reading, not just watching TV, going to bed, like, keeping your mind active, we know that that can help. We can also send for therapy to help with that.

There could be prolonged taste changes, even after the chemo's done, dental problems. Hormone therapies can cause bone loss like osteopenia, osteoporosis issues from hormone blockers, so we make sure we've getting DEXA scans on patients, making sure their vitamin D and calcium is maximized, and sending to rheumatology if they're having any real issues.

Also, early menopause for our younger patients, infertility issues from chemotherapy. You know, we definitely identify this ahead of time, have a discussion with our patients about this short and long-term side effect. And if they're interested, definitely send them to reproductive endocrinology, whether to talk about egg harvesting or what we can do to help them in that way.

And the other thing I was going to talk about was lymphedema, which isn't really chemo, but it's just something that we kind of always deal with our patients as we're talking about chemo because they usually have had a surgery. But you did really great with that one. (laughs)

Lisa Rauh-Benoit, MD:

Thank you. (laughs) It's a challenging side effect of treatment to manage, and it can really radically change their day to day lives once they're done.

Erica Newlin, MD:

Yeah.

Suzanne Surovec, CNP:

It's great that you talk to them about it, because sometimes surgeons don't, I've found in the world, and patients are very shocked by it and very distressed if they don't know what they're getting into.

Lisa Rauh-Benoit, MD:

Yeah.

Erica Newlin, MD:

And Suzanne, you brought up our palliative care team, and I think that's a really important team to note and applaud. I think a lot of people think about palliative care being end-of-life care-

Suzanne Surovec, CNP:

Correct.

Erica Newlin, MD:

... but it's really much broader spectrum than that.

Suzanne Surovec, CNP:

Absolutely. It's all about symptom management, and they really help us. Like, we know how to manage things, you know, kind of initially and first and second line treatments. But when things get really complicated and there's a lot of multimodal things going on, that's their specialty.

And sometimes patients are resistant to see them just because of the connotation of palliative, so we really have to teach our patients that this is not about end-of-life. This is about managing your symptoms, and if you had a heart attack, wouldn't you want to go to a heart doctor? Do you want to go to your primary care? No, you would want the specialist for you. So that's kind of how I frame it for patients.

Erica Newlin, MD:

Mm-hmm. And let's talk about radiation therapy. What kind of side effects can someone expect after radiation therapy?

Lisa Rauh-Benoit, MD:

Yeah. And you know, radiation therapy, similar to chemo, I think the one thing to remind patients about radiation, and I talk to them, and I know the radiation oncology colleagues who are fantastic, you can often have side effects that crop up months or years after finishing treatment, whereas generally for chemo, there are some exceptions, most of these side effects they're going to experience during chemo and will start to improve the longer time they're off treatment. And so you kind of always have to have your brain just thinking about, what are the potential side effects of radiation? But there's a lot of them.

I know you mentioned infertility. That is a concern, especially for patients who are having definitive radiation for cervix cancer, vulvar cancer. The ovaries are often in that radiation field, and also the uterus is in that radiation field. And so for our younger patients, we need to discuss that with them before treatment if there's time, address that in the best way we can. We talked about using our reproductive endocrinology team, but that can be challenging.

Some patients do have chronic pain after radiation. It's not as common. I'd say part of that, and kind of leading into, is pelvic floor dysfunction, which is just a vast term. I tell patients your pelvic floor is a giant muscle, and so sometimes they have too much tone to the pelvic floor. Sometimes it's lax, and sometimes that increased tone can cause pain.

And so one thing, and I think patients honestly think I'm a little out there when I tell them about pelvic floor physical therapy, but it's such a phenomenal adjunct for these patients. And even my patients who are the most reticent always feel it's great because there's no needles. There's no labs. There's no surgeries.

It's really thinking about your pelvic floor as a muscle just like your biceps and learning how to train it, whether it's to relax it, build its strength. So I refer all the time to pelvic floor physical therapists. I really can't understate their value in managing our patients.

These are in no particular order, by the way. So the next thing, I think the things most people are going to think about radiation, and again, we're generally using radiation in the pelvis. Sometimes we use it for other areas of the body, but in general, the people who are to get the most focused treatment, it's going to be in the pelvis.

And so long-term scarring of the bladder and of the rectum. And so we call these things radiation cystitis and radiation proctitis. So that can be things like bloody urine, bloody stool, trouble emptying one's bladder, reduced ability to hold urine. Sometimes the bladder scars down so much, they can't hold their urine. It can only hold so much. Sometimes narrowing of the rectum and trouble having bowel movements after radiation.

We work a lot with urology and colorectal surgeons or gastroenterologists to manage these. Some of this is looking with cameras. Sometimes we can distill the bladder. They can instill certain medications that may help. Sometimes if there's a bleeding area, they can use, they can procedurally stop the bleeding. And so we generally partner with those teams a lot.

And then we talked about lymphedema at length, but you can develop lymphedema from radiation, whether you've had removal of lymph nodes or not. People are at risk for bone weakening, and so they're at risk for generally not major fractures, but small fractures. And they can get chronic pain from those.

And then, you know, in general when you've had tissue that's had radiation, I tell people all the time, when you cut yourself and you have a scar, that scar doesn't behave like your normal skin. And so skin that's had radiation treatment doesn't heal as well. And so, I always caution them if they have to have a surgery, they need to make sure they tell them they've had radiation, because it does have implications for how well they'll heal after a surgery.

And then kind of the final thing is scarring, narrowing, or what we call stenosis of the bladder. I kind of explain it to patients that the radiation makes the walls of the vagina kind of sticky, and it sticks together. And so I think that Suzanne here is going to be talking a bit more about that in a minute, so I'll let her do that.

But you can imagine that can be very (laughs) impactful on patients' quality of life, both with personal relationships and also if they're coming in... We do a lot of pelvic exams in our follow-up, so it can make exams really uncomfortable, and sometimes it can make them less beneficial if we can't really evaluate that area anymore because it's so scarred down.

Erica Newlin, MD:

Yeah. So that leads us, when talking about vaginal stenosis, to talk about sexual health. Suzanne, can you describe some of the sexual health concerns faced by survivors of gynecologic cancer?

Suzanne Surovec, CNP:

Sure. And it's great that you bring this up, because sexual health is an important aspect of our lives and people are often nervous or afraid to discuss with us. So it is super important that we bring it up at every visit, you know, ask about their sexual activity, if they're having issues with it, you know, just kind of gently start the conversation and just see what their comfort level is talking about it.

Like Dr. Rauh-Benoit said, things like radiation can scar down the vagina. There can be what we call agglutination where it's like the vaginal walls stick together, and that can definitely make intercourse painful. And you know, if you're not comfortable and you're in pain, it's going to make the whole experience terrible, and that leads to lack of libido, guilt, all kinds of other feelings.

So definitely we need to screen our patients for having vaginal dryness, vaginal bleeding. Things like that due to radiation or even surgery can cause, like, a shortening of the vagina. It can make intercourse more uncomfortable.

Sometimes it's not even physical. It's just kind of a mental thing, like I've heard women say to me, "Oh, you know, my husband thinks he's going to hurt me now, so he is afraid. But I want to, but you know, he's afraid to hurt me."

And you know, there's also things like when you're going through chemo, if you're nauseated, vomiting, having bowel issues, you're not feeling really into it. So that's another effect, body imagine issues, your loss of your hair, all sorts of things go running through people's minds.

So endocrine therapies cause dryness of the vagina. The selective estrogen receptor modulators like tamoxifen or aromatase inhibitors can definitely cause painful intercourse and then thus lack of interest. And you discussed the radiation therapy quite well, so I won't go over that again.

But treatments that we can offer our patients, number one, if they've had radiation therapy or even just having difficulty after surgery, is dilators. We really encourage our patients to use dilators with lubricant two to three times a week, and that could be either just a dilator or having intercourse, just to open up the vagina and keep it open, especially during that healing period after radiation when it's a little bit sticky so it doesn't scar down.

And pelvic floor physical therapy, I can't stress enough. Yeah. We really get some resistance when we say it to patients, because they think they don't really get it, but once you explain what's going to happen and how it can help, and not just for sexual health but also things like urinary incontinence after surgery-

Lisa Rauh-Benoit, MD:

Mm-hmm. Absolutely

Suzanne Surovec, CNP:

They come back always saying, "Thank you so much for that referral, because it's so super helpful." And then hormonal or non-hormonal moisturizers or, estrogen cream, if it's appropriate depending on the cancer type, lubricants with intercourse. And we're very blessed here at the clinic to have great consults to help us with these things as well.

We have a sexual health team that can take more steps beyond what we've helped with in the clinic to go through other treatments like maybe DHEA hormones for the vagina, you know, suppositories, go further with the dilator training. We have a nurse practitioner that all she does here is dilator training.

And then also now we just recently got a sex therapist to help with talk therapy, which is a wonderful addition to the team. So we have a lot of resources for patients, and whatever their needs or comfort level is, we definitely need to send them on the way.

Lisa Rauh-Benoit, MD:

Yeah. I've actually sent a lot of patients and partners to therapy over the years.

Suzanne Surovec, CNP:

Mm-hmm.

Lisa Rauh-Benoit, MD:

It's just a huge life transition, and so again, something I often am met with resistance when I suggest it-

Suzanne Surovec, CNP:

Mm-hmm.

Lisa Rauh-Benoit, MD:

... but most people are really grateful, and I think it helps them understand things may not be the same, but they can still be good, because this is a challenging treatment. It's a sensitive area of the body, and these are difficult topics for a lot of people to talk about, so-

Suzanne Surovec, CNP:

Absolutely.

Erica Newlin, MD:

And these are things that we talk about every day, so not something for patients to feel embarrassed to bring up.

Lisa Rauh-Benoit, MD:

Right. That's a great point. How many times has someone come into clinic and, you know, apologized for-

Suzanne Surovec, CNP:

Mm-hmm.

Lisa Rauh-Benoit, MD:

... you know, they have an odor. And we're like, "We would not notice that."

Lisa Rauh-Benoit, MD:

This is normal and kind of normal, especially in a lot of our, I think our older patients. I think our younger patients, there's more awareness.

Suzanne Surovec, CNP:

Mm-hmm.

Lisa Rauh-Benoit, MD:

But a lot of my older patients, there's a lot of reassurance involved that, you know, I see this all the time. And if there is something wrong, I will tell you. Right?

Suzanne Surovec, CNP:

Absolutely. I agree. I always tell patients, if you can't say it here, where can you say it?

Lisa Rauh-Benoit, MD:

Yeah.

Suzanne Surovec, CNP:

This is what we do. You know, this is a safe space. It's not leaving this room. Whatever you need, you can tell me, so-

Erica Newlin, MD:

I tell them it'd be weird to talk about at the dentist-

Suzanne Surovec, CNP:

(laughs)

Lisa Rauh-Benoit, MD:

(laughs)

Erica Newlin, MD:

... but here, it's fine.

Lisa Rauh-Benoit, MD:

That's totally-

Suzanne Surovec, CNP:

That's a good one.

Lisa Rauh-Benoit, MD:

... that's totally fair.

Suzanne Surovec, CNP:

I love that.

Lisa Rauh-Benoit, MD:

You know, we get to see our patients for such a long period of time, and I think that helps a lot-

Suzanne Surovec, CNP:

Mm-hmm.

Lisa Rauh-Benoit, MD:

... because it allows us to sort of build that trust and relationship. And I think over time, they will open up to us about these things, so-

Suzanne Surovec, CNP:

100%.

Erica Newlin, MD:

What would you like people to know about cancer survivorship and mental health?

Suzanne Surovec, CNP:

So good segue into this topic, because we were talking about therapy before for sexual issues, but really having a cancer diagnosis and life beyond cancer, it's really like a post-traumatic stress. I mean, your life-

Lisa Rauh-Benoit, MD:

Mm-hmm.

Suzanne Surovec, CNP:

... was just ripped out from under you. Nobody expects to get a cancer diagnosis, and it really sets people up for depression and anxiety. And in the survivorship period especially, it's interesting, because a lot of times, patients are cancer-free. They're NED and no evidence of disease. And so I've had patients tell me their friends and family are like, "Well, you're fine now. You know, what are you upset about? Why are you anxious? You're good. Don't worry about it."

But really, I've seen survivor's guilt in patients that just had an endometrial cancer that was easily treated with a hysterectomy and didn't need chemo. They're like, "I don't really feel like I even had cancer, but I did, and it scared me." So they feel uncomfortable kind of expressing their emotions about that.

Fear of recurrence is definitely there. I've had patients tell me, "Well, you know, I'm fine, and then every time that surveillance visit comes up or I have to have a CT scan, I'm just scared to death. I can't eat. I can't sleep. I'm just so worried it's going to come back."

And for other people, there's financial concerns. How am I going to pay for all this treatment? You know, how am I going to get to my visits coming up? That kind of thing, if they have socioeconomic concerns.

And you know, they have the guilt issues sometimes. They can't do what they used to do with their kids because of what they've gone through. There's a lot of mental and social issues that go into the cancer process and survivorship process, so we definitely should be screening for this at every visit as well, hoping our patients trust us enough to open up to us. There's a lot of stigma sometimes around mental health, but we just have to obviously make it a safe space for them, and we have great referrals for oncology, psychology, and psychiatry for our patients to help them cope.

Erica Newlin, MD:

And are there any particular resources in general you would recommend for survivors of GYN cancer?

Suzanne Surovec, CNP:

So I have a great list that we give patients at their survivorship visits, but just to throw a few of the easy ones out there, the American Cancer Society, cancer.net, the CDC Cancer Care, chemocare.com. Here in Cleveland, we have The Gathering Place, which is a local area that has programs for social, emotional, physical, and spiritual needs. Livestrong.org and the National Cancer Institute are all things people can look up online, and they have tons of resources for survivorship.

Erica Newlin, MD:

Great. And to wrap things up, is there anything you'd like to say in closure to any survivors of GYN cancers?

Suzanne Surovec, CNP:

I'd just like to say, thank you for letting us be a part of your journey, and we're always going to be there for you. And if you need anything in this survivorship time, please reach out to your healthcare teams. They're there for you from start to finish, and anything that you're feeling is normal and is okay and we want to be there for you.

Lisa Rauh-Benoit, MD:

Yeah. I would echo the sentiments. You know, I think sometimes we kind of talk about, how long do you follow patients? And the usual answer is about five years with no evidence of recurrence. And patients fall into two camps, one who kind of don't ever want to leave my practice, and some who are like, "No offense, I don't ever want to see you again."

Suzanne Surovec, CNP:

(laughs)

Lisa Rauh-Benoit, MD:

But you know, my patients who are comfortable returning to routine follow up with usually a general gynecologist is that, exactly, you are my patient from now until eternity, you know, end of eternity. And so if you ever have any concerns, your provider has any concerns, pick up the phone and we'll talk. We'll see you.

So, yeah. And you know, I've had those conversations a lot, but it's kind of, getting back to the beginning, we were talking about our backgrounds. It's why we do this and why we love it so much. And we have these fantastic relationships with these incredible human beings and their families. And so we are always there for them.

Erica Newlin, MD:

Well, thank you so much.

Suzanne Surovec, CNP:

Thank you.

Lisa Rauh-Benoit, MD:

Yeah. Thank you.

Suzanne Surovec, CNP:

Yeah.

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.