Better Sexual Health for Women Taking Hormonal Therapy

This podcast episode is made possible, in part, by a grant from Lilly.

Jamie DePolo: Hello, thanks for listening. I’m podcasting from the 2023 American Society of Clinical Oncology Annual Meeting. My guest today is Dr. Kristin Rojas, a breast cancer surgeon at the Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine. Dr. Rojas is a national leader in treating sexual dysfunction in women receiving cancer treatment. At this conference she chaired a session called “A Juggling Act: Managing the Toxicity of Estrogen Deprivation for Patients With Breast Cancer.” She joins us to discuss some of the symptoms people who identify as female may have, as well as treatment options for them.

Dr. Rojas, welcome to the podcast.

Dr. Kristin Rojas: Thank you so much for having me, Jamie. I’m thrilled to be here.

Jamie DePolo: So, this is great because I know there are many, many, many women -- I don’t want to say all but I’m thinking it’s a lot -- have sexual health issues after breast cancer treatment, and they’re often hesitant to bring up these problems with their medical team. You said that during your presentation. So, can you tell us why that is, why do you think that is?

Dr. Kristin Rojas: I think it’s a couple different reasons. Number one, as a society we haven’t been doing a great job addressing menopause in general, and a lot of these symptoms fall under the umbrella term of menopause symptoms, and so, as a society we’re not well equipped to not only talk about these topics, but address them. 

I think the second aspect of this is limitations in the clinic. I think that oncologists do want to address these issues deep down inside but they don’t always have time, and they don’t always feel comfortable talking about these things.

So, through raising awareness about these issues I’m hoping to not only give patients the language to ask about these concerns, but also give providers the tools to address them in easy ways that are manageable in a busy oncology clinic.

Jamie DePolo: Okay, and do you think part of it could be, too…I’m just wondering, you know, maybe as a patient they don’t think the oncologist is the person who could treat it or address it?

Dr. Kristin Rojas: You know, I have a unique role at Sylvester Comprehensive Cancer Center. I’m actually the director of the Sexual Health After Cancer program, called MUSIC. It stands for Menopause Urogenital Sexual Health and Intimacy Clinic, and I think it’s important for whoever is giving this advice to maybe have some flavor of either oncology background or interest in treating women with a history of cancer. I think that there are gynecologists who specialize in these concerns, but I think as part of a multidisciplinary team of care for these symptoms, it’s good to have someone who’s oncology-minded on the team. 

So, I think actually that oncologists are the perfect people to discuss this. I think it’s a multidisciplinary collaboration just like a lot of other aspects of cancer care and that oftentimes it’s good to coordinate with a gynecologist because these patients that are experiencing these symptoms really should be getting a regular exam because I spoke about that in my presentation at ASCO about how oftentimes we pick up exam disruptions. So, if we don’t treat these symptoms and they go untreated for a long time, then actually patients’ pelvic exams can become abnormal and that may be the cause of a lot of their symptoms.

So, I think it’s collaboration between the oncologist or an oncology-minded individual so, that the interventions that are recommended are both effective and safe.

Jamie DePolo: Okay. That makes sense. And could you talk about some of the most common, maybe the three that are most common, or I’ll leave it to your choice, or maybe the most distressing, and then what are some of the treatment options?

Dr. Kristin Rojas: Well, one of the interesting aspects that we have described in our research at the MUSIC program at Sylvester in Miami is that patients don’t just talk about, or they’re not just concerned about vaginal dryness. About a third of patients report low desire is the most distressing symptom so, I’ll talk about let’s say first hot flashes, dryness and painful sex, and then desire. 

Jamie DePolo: Okay.

Dr. Kristin Rojas: So, number one, hot flashes. These are caused by an imbalance or dysregulation in the brain where your body isn’t interpreting your core temperature correctly so, treating them really involves something that works in the brain. So, there’s behavioral modifications that we advise, but there’s also several medications that are evidence-backed that are really helpful for hot flashes.

These include venlafaxine, oxybutynin, which are the two that we use in the MUSIC Sexual Health After Cancer program, and more recently there’s an FDA-approved medication that is a neurokinin-3 inhibitor and the name escapes me right now because it’s, it begins with an F, but that’s also very exciting. 

(The medicine Dr. Rojas is referring to is Veozah [chemical name: fezolinetant].)

Those are very disruptive to the lives of more than 80% of women with cancer. They wake you up at night, they mess up your day, make it hard to work, it’s a big deal. They can often present as panic attacks, too, and so, it’s not just anxiety like, you may actually be having hot flashes. 

The second thing is painful sex and dryness so, in my talk I spoke about different options for moisturizers, which are actually different from lubricants. I have patients start with a non-hormonal moisturizer first and I like for them to start with a hyaluronic acid-based moisturizer at least three times a day. I prefer for patients to use silicon-based lubricants if they’re not depending on condoms for contraception or STD protection. 

And then the other thing we talk about in MUSIC a lot is managing the persistent symptoms after we’ve fixed the dryness, and that’s issues with the pelvic floor. So, we do a lot of dilator training in the MUSIC program, and the MUSIC program also has an Instagram where we posted videos on how to use the dilators so, that they’re not so intimidating, and then oftentimes we refer to a pelvic floor or pelvic health physical therapist because they can be really helpful with those painful sex symptoms that are not just related to dryness.

And then lastly, desire. Like, the hardest nut to crack really for these patients, but really, really common and very under-addressed, probably the most under-addressed issue. And as a provider, when I started this program, it was probably the most intimidating topic for me to address because I didn’t really know if I had the solutions for patients because it’s so complicated. It involves issues with relationships, past trauma, and other issues like that, and then plus the biological aspect. So, I think that by treating the pain with sex, oftentimes desire does start to return. 

But many women need more than just that so, we like to plug them in with either psycho oncologists or relationship counselors. The AASECT.org [American Association of Sexuality Educators, Counselors and Therapists] website can help patients find sexual therapists that address a lot of those issues.

And then for my talk, I also touched on the two FDA-approved medications for low desire -- FDA approved for pre-menopausal patients -- studies are ongoing for women with cancer. However, in MUSIC we do often use flibanserin [brand name: Addyi] which is a once-a-day pill for patients who are on endocrine suppression. With tamoxifen it’s a little tricky because it can increase the side effects of this medication so, we have to have a long discussion about that. But we oftentimes do also use these FDA-approved medications that are either a once-a-day pill or an injection given prior to sexual activity, and I’d say probably more than half of the patients respond. But because desire is so complicated, it really does take like, a multi-faceted approach.

Jamie DePolo: Yeah. That would make sense because you figure if somebody’s had a mastectomy there may be some body issues which play into the desire and everything like that.

Dr. Kristin Rojas: Yes, definitely. And body image is also tough, and that’s also where I think that organizations like Breastcancer.org that put out this information but also put patients with other patients so, they can talk about how they approach these things is really important. 

Jamie DePolo: So, I know during this session you also discussed some products and therapies and devices that people should avoid, and I feel like that’s just as important as what people should do. So, could you talk about that a little bit?

Dr. Kristin Rojas: Yeah. Thank you so much for asking me about that. I think because we haven’t addressed these symptoms for so long it’s fostered an environment where not only unsafe products but unsafe devices have been recommended to patients and so one of the elements of my talk is discussing what’s known as vaginal lasers.

Jamie DePolo: Yes.

Dr. Kristin Rojas: These are usually energy-based devices placed in the vagina, usually CO2 lasers. They have gentle-sounding names and there are several different companies. They’re often specifically marketed to breast cancer patients, especially around October. And many patients get referred for these treatments because they think they have no other option, and that’s what I like to talk about is all the options that patients do have. I think we’re underutilizing them and those options are definitely more safe.

It's important to know that these devices were never FDA-approved to be used in the vagina. They were part of a program within the FDA called the 501k program which is basically a fast-tracking program for companies to register their devices. The FDA actually doesn’t need to look into whether they are effective or safe. And so, there have been two placebo or sham-controlled trials that have come out in the last two years showing that when women who receive these treatments are compared to women who receive a sham treatment, meaning like, the device is placed but maybe it’s not turned on, there’s no difference in their symptoms, even when they did biopsies. 

And so, these devices have not been shown to be effective in randomized controlled trials, and in the MUSIC program we’ve actually taken care of patients who have chronic pain, burns and scarring, and are being physically harmed by these devices. And so, it’s very concerning and it’s kind of my warpath right now so, I’m so glad you brought it up. Thank you.

Jamie DePolo: Well, I want to ask you, too, before we go on to anything else that people should avoid. I’ve seen kind of two separate marketing strategies. One is called vaginal rejuvenation, and then the other one that you just spoke about was sort of the reignition of desire. And I think people sometimes confuse the two or the think they’re getting both at once. So, what actually is the vaginal rejuvenation?

Dr. Kristin Rojas: Yeah. You’re right to point that out because the marketing is confusing. And it’s made more confusing by a 2018 advisory release by the FDA that asked these companies to roll back their deceptive marketing. So, now when you go to the websites of these devices there’s actually a version of the website for Americans and then there’s a version of the website from outside of the United States. 

And so, they’re marketing them outside of the United States for all kinds of things, not only to make the vagina appear and feel more youthful, which is under this umbrella term of rejuvenation, but also to increase pleasure or maybe treat other medical conditions such as urinary incontinence, lichen sclerosus, or other issues like that where these devices really should definitely not be used. 

Vaginal rejuvenation in general, it’s tough to talk about because it’s so pervasive in our culture now. These devices do fall under that category but there are also surgeons offering different procedures called labiaplasty, which is where they change the shape of the external vagina which is called the vulva, which includes the labia majora and the labia minora. I think that it’s very…it’s tough for me to talk about this because I’ve taken care of women who had these procedures done by people who are not trained in anatomy, and that’s a real problem here in the United States is that non-gynecologists are operating on the vulva. 

And so, that’s a whole other podcast in itself and it has a lot of cultural issues and I definitely have a lot of opinions about it, but I try to steer patients away from surgical cures for their symptoms because oftentimes we can treat them without surgery.

Jamie DePolo: Okay, and are there other devices or sort of drugs, things, that people should avoid?

Dr. Kristin Rojas: Yes. So, thank you so much for asking about other drugs that patients should avoid. I think that another big topic that could also be its own podcast is the topic of bioidentical hormones.

Jamie DePolo: Ah, right.

Dr. Kristin Rojas: Yes. There are FDA-approved versions of vaginal estrogen, that is estradiol, and that is a bioidentical substance. Bioidentical is a marketing term. So, the estrogen in our body is also estradiol. It doesn’t matter if it was created in the lab or created from soy beans, it still has to undergo like a chemical process. So, calling something bioidentical doesn’t make it more safe or more natural.

Under this term bioidentical, there are companies that are kind of compounding, making these different combinations of different types of hormones, and they may start by taking a patient’s blood or salivary test and telling them that they are like, off on certain hormones. They’re either like estrogen…that their estrogen is too high or their progesterone is too low or their testosterone is too low, and so, sometimes I’ll see patients that are on these concoctions that are not FDA approved, they’re not monitored for efficacy or safety, and so, what sometimes happens is they have really large doses of hormone in them and specifically testosterone. 

This also includes something called pelleted therapy where patients will have a pellet of testosterone placed somewhere in their body in their skin and it lasts three months. When you actually measure the testosterone levels in those patients, they’re really, really high. Patients feel amazing, they’re having lots of sex, they’re working out because testosterone is an anabolic steroid. But we know that in your body testosterone is converted to estrogen and so, women with a history of estrogen-sensitive cancer really should not be using these bioidentical hormones because -- terms marketed as bioidentical and not FDA approved -- because number one, we don’t know how every body is going to react to these levels of hormones, we don’t know what it means for your risk of recurrence, and while there are people who are marketing them as a safe alternative, I really don’t recommend bioidentical hormones and I try to get patients on FDA-approved versions.

Now, I’m not against vaginal hormones for breast cancer patients. I’m actually very for this, and we do have two FDA-approved aspects of that. There’s vaginal estradiol that we use a lot in the MUSIC program, and then there’s vaginal DHEA or prasterone, which is kind of a cousin of testosterone, and we utilize these therapies a lot. They’re are FDA approved, I know how the body is going to react to them, I know we have studies showing that estrogen and testosterone don’t go up really high when patients receive them, and those are really the safer option for patients, especially with a history of any type of cancer.

Jamie DePolo: Okay. Yeah, because the…my understanding, and correct me obviously if I’m wrong, is that when it’s used vaginally it kind of stays in that area and helps that area and it doesn’t go throughout the body. 

Dr. Kristin Rojas: Yeah. That’s a great point. When we’re using hormones locally…so, first of all the studies showing that there might be some absorption into the blood stream from vaginal estrogen are a little bit older and they used doses that are a lot higher than products we have today, maybe like, five times higher. And so, we have really, really low doses of vaginal estrogen, and also we can dose them in a way like, maybe once or twice a week, where there’s really not likely to be any kind of significant absorption. And so that’s how we manage that in the MUSIC program.

It is controversial and usually by the time patients get to me they’re very estrogen-averse because they’ve been conditioned to avoid all those products, which is good, but we can utilize these in safe ways, and while there might be a tiny bit of absorption in the beginning if you use a larger dose, we can usually employ tactics to minimize that absorption, which I think helps patients feel better, and we also speak to their providers, their oncologists, and make sure they’re on board and that they understand we’re doing this in a really supervised, careful, thoughtful way.

Jamie DePolo: Excellent. Thank you so much for all this. So, to wrap up, I know you have the MUSIC program at your institution, which sounds amazing, but that’s there, and I know you’re working at getting some similar programs started other places, but how would you advise women who maybe don’t have access to a program like that, how should they go about starting a conversation with a doctor or finding a doctor to help them if they’re having some sexual problems?

Dr. Kristin Rojas: Yeah, that’s a great point, but also it has a solution because of the way that our society is now with social media. So, I thought of this, too, when we started the MUSIC program, because I’m both a breast cancer surgeon and a gynecologist, there aren’t a lot of hybrids like me in the world. There’s a few of us, and we’re all very sexual health-minded. But for the MUSIC program we actually have a MUSIC Instagram which is music_sexaftercancer and I post a lot about new treatments and these specific issues that women with cancer are experiencing and how to address them so, that people anywhere can access this information.

And it’s actually been really interesting because I have people reach out to me from Thailand, the Philippines, South America, you know, saying that they haven’t been able to find someone who can address these issues so, we really try to make that information accessible. 

There’s also a lot of other programs that are happening. You’ve spoken to one of my colleagues and very good friends, Dr. Sarah Tevis, from University of Colorado. She’s making her videos with her group that are trying to increase information accessibility for all types of patients. 

And then with regards to patients bringing it up with their providers, I want to empower every patient to start the conversation. You have nothing to lose, you’ve gone through cancer treatment, you are entitled to say almost whatever you want in the oncologist’s office. So, bring it up. Say hey, Dr. so and so, I’m having some issues, some side effects from this treatment. One of them is painful sex, I’m having some vaginal dryness, I’m having low desire, low libido. Do you have any resources for me or advice? Can you refer me to anyone? 

Even if they don’t have a solution for you right then or your oncologist all of a sudden looks very flustered and uncomfortable, which totally happens, we’re human. If five people asked that oncologist that day about their sexual health concerns, they’re going to go home, they’re going to find the resources, they’re going to put something together for patients, whether it’s hiring an expert or referring you to an expert on the outside, or putting together some information. So, the more you bring it up, the more we’re going to talk about it and the more it’s going to be addressed, the better job societies are going to do teaching other providers like, ASCO did by putting together a session this year.

And so, I just want everyone to feel empowered to start the conversation with their providers. 

Jamie DePolo: Dr. Rojas, thank you so much. This has been so helpful. I appreciate your time. 

Dr. Kristin Rojas: Thank you so much for having me, Jamie, and thank you, Breastcancer.org for bringing more awareness to these issues, and everyone check out our talk on ASCO which should be available on the ASCO website.

Read the article associated with Dr. Rojas’ ASCO presentation.