A Woman's Guide to Sex and Cancer

Dr. Diane Reidy-Lagunes:

Let's talk about sex. Because why do we never talk about it? Fact: 11.5 million cancer survivors in a recent study reported 87% of those patients experienced sexual side effects. Translation: these sexual changes happen all the time. You're clearly not alone. In one study, 78% of the patients want to talk about it, but don't. So today, we will. And for some reason, we, the docs, are twice as likely to ask the men and not the women. So all the women out there, and your sensitive care partners, this one's for you. Tune in for this much needed talk. Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have straightforward evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcasts. Cancer and cancer treatment can wreak havoc on the body. As doctors, we're focused on the disease and a certain level of normal living, but the impact on sexual health seems to just get lost in the shuffle. And we need to talk about it. So here we are. Joining me today are two pros in this space, Dr. Jeanne Carter, clinical psychologist and certified sexual health therapist, and Ashley Arkema, nurse practitioner who focuses on gynecological health and sexual dysfunction. We're so happy to have you both here and lucky to have you at MSK. Jeanne And Ashley, thank you so much and welcome to the show.

Dr. Jeanne Carter:

Thank you for having us.

Ashley Arkema:

Thanks so much for having us. We're excited to be here.

Dr. Jeanne Carter:

I want to start with Dr. Carter. Jeanne, why do you think nearly 80% of patients are just afraid to ask doctors about sex?

Dr. Jeanne Carter:

Uh, I think it could be a variety of things. They feel that this may not be a priority, so they don't want to bring it up. I think also sometimes patients may be in a space where they're not quite sure they're ready to work on it, so they may be avoiding the subject altogether. But I definitely think it's sort of our job to create a space that's comfortable so that these conversations can happen naturally both between patients and providers.

Dr. Diane Reidy-Lagunes:

Ashley, what do patients that you care for tell you when they're talking to their oncologists about sex?

Ashley Arkema:

It's obviously an awkward topic, right? It's hard for people to bring up. And so I think it's really up to us to bring up the topic. And unfortunately, in an oncology visit, there's so many things to cover. So I really, when I see patients, encourage them to advocate for themselves and try to ask for these services. Some people feel like a face-to-face conversation might be a little bit less comfortable than maybe an email to the nurse or something. So sometimes a phone call or an email might be a way to ask some questions, but to make things feel a little bit more comfortable. I think the important thing is to know that these are really common issues and you're definitely not alone if you're feeling this way, and these questions have been asked before.

Dr. Diane Reidy-Lagunes:

Yeah, I think that's a great point. We talk in oncology sometimes about one, two, three, which is like the first visit is all about the treatment plan. Like you said, you're in a life or death situation, you really want to know how we're going to treat the cancer. But then the second and the third visits can be more about your values, what's important to you, and sexual health was certainly obviously come into play on one of those. We'll talk about the communication with docs, but I'd like to first introduce you to Stacy. She's a patient of mine, a dear patient, and she's going to talk to us about her experience.

Stacy:

It must've been about a year after my first surgery and just the thought of having sex and doing anything romantic like that, the thought of it just turned my stomach. It was just no way. I was just not in the mood, I was lethargic, and just thinking about that, it was like, you got to be kidding me. There are elements to chemo and radiation and all the different kinds of drugs you take to influence the side effects that can make you dry and can make you not really want to have sex, but you can get past that. Sometimes you just got to push yourself past that and you have a great time anyway. And you know, if you're too dry, there are products you could use, but there are also alternatives to standard sex. You can do other things, you don't even need another person. But it's good to know that when you go through those phases where the idea of it is just, are you kidding me? It passes. And you can absolutely have a normal sex life after cancer or during cancer. And if it gets to be a problem, you should definitely talk to somebody because generally it's fixable and you don't want to lose that element of your life. It's fun.

Dr. Diane Reidy-Lagunes:

So, Ashley, she's 59 years old and she's bringing up a lot of important issues here. You know, many of our patients, they feel miserable. They're on these treatments. They don't feel well physically, emotionally. Could you talk to us a little bit about some of the things that she brought up?

Ashley Arkema:

Absolutely. I think that, you know, it's very common. We hear a lot of people that come in and talk about how they're just feeling so exhausted and tired. And they ask, is this even possible in the future? And I think early on in treatment, especially, it's a hard thing to even think about, but we know that there are treatments that can help. One thing I always like to bring up to patients is that vaginal intercourse, if that is a goal for you, that that can be achieved. But sometimes there's a period of time where we need to work on moisturizing the vagina and using different products to help you to get to the point or maybe using a vaginal dilator, which we can talk about later. Before you're ready to have vaginal intercourse, you can do things externally. You use a vibrator, do something and just have that open communication with your partner.

Dr. Diane Reidy-Lagunes:

And Jeanne, the intimacy piece actually can help with recovery, but the cancer treatment tends to just take the romance out. Are there recommendations or advice that we can give our patients on to how to be a little bit more comfortable with themselves? And is there a fear and stress that comes with that idea of trying to be intimate?

Dr. Jeanne Carter:

One of the things I think is important to do first is just to normalize it for them. And I always tell people, different is just different. It doesn't have to mean it's bad. So sometimes, if the old sexual repertoire is not working as well, it may be trying to add things in to make it more creative and more fun and spontaneous and focus on new things to create some of that fun and excitement that people so need after, and during, a cancer experience. I think the mind-body connection is completely immeshed in sexuality. There's huge physical components, as well as mental and cognitive components. You know, women may not be sleeping and if they're not sleeping, they're not having as much energy and they may not be in the mindset of feeling like a sexual being. So it's important to manage those symptoms, but once you get someone to a place where they're really starting to reconnect with their body, and that's what I call as part of the healing. Going through a cancer experience can feel very somatic, especially when you're on treatment, so it's trying to connect with your body in a positive way, and to have that be part of sharing yourself with another human being when you're ready. So a lot of times if people are on treatment and they don't have energy, they don't necessarily have to be sexual, but they can be intimate and enjoy the hugging and the touching and the kissing and the caressing and feel like a sexual being, even if they may not have the energy or if their counts are low and they're worried about infection or things like that. And when they do feel like they're in a physical space where they want to be more physically sexual, it's really important to make sure that the cognitive factors are not interfering because sometimes that fear of sex or just monitoring how your sexual response. I always tell people to sort of, if they're talking in their head, their arousal's coming down. So try to get back into their body. And that's where sensual touch and expanding the repertoire and using a vibrator or other fun things can really help you stay in your body in a positive way.

Dr. Diane Reidy-Lagunes:

Along those lines, what about the idea of coaxing your libido? I think even for the non-cancer patient, you know, sometimes you're just like, no way, not interested. Is there anything to add on that piece to sort of get you into the moment and make yourself feel like that is something that you do want to do?

Dr. Jeanne Carter:

Libido is a very, very tricky entity that we all have moments where we question it. But I definitely would say the first thing we have to understand is that libido can be both reactive as well as spontaneous. You know, we have a society telling us that libido should be voracious and spontaneous, and this is the way it has to be all the time. And that may not be the way that it happens. What I mean by reactive is someone may not be in the mood and then they're hugging and touching and caressing their partner, and it feels good. And they're like, wow, this is nice, maybe I should do a little bit more of this. And if you have a positive experience, as human beings, we usually tend to want to do things that are enjoyable and pleasurable. So trying to cultivate some of that creativity and nuances can make it fun. But that being said, you also have to have realistic expectations. So if you have the energy of zero, it's really hard to cultivate libido in that setting. So the goal may be just closeness, but knowing that if you're not reaching an orgasm, it may be because you're really quite physically fatigued. So testing out your own sexual response, making sure that things feel comfortable, using moisturizers or using dilators to see that if you wanted something to go into the vagina, that it wouldn't be painful. These are all confidence-building strategies so that you can feel confident that you can share your body and you're not worrying about what's going to happen.

Dr. Diane Reidy-Lagunes:

I would imagine with young people there may be a added level of stress in terms of trying to perform when again, potentially, you're not necessarily in the mood. I'd like you to listen and meet Mackinzie, a 35 year old patient and hear what she has to say.

Mackenzie:

My name is Mackenzie Dougherty. I am 35 years old. I was diagnosed with stage one, triple negative breast cancer on March 15th, 2019. I underwent a double mastectomy to remove both of my breasts, followed by eight rounds of chemotherapy. The thing that surprised me most about my breast cancer journey, which a lot of women don't speak about is the loss of feeling in your breasts after you go through that surgery. It's something that really is a loss, sexually. Someone touching my breasts was one of the most amazing forms of intimacy when you're with a sexual partner. And it took me a while to tell him that it really doesn't keep me turned on when you touch my breasts during sex, because it really puts my mind back into a whole different dimension of, why can't I feel my breasts? I would say, short-term, chemotherapy created a lot of boundaries. My vagina was very dry for a very long time. I was lucky enough to be referred to a doctor who really showed me a diagram of what was going on and why my body was doing what it was doing. And she explained to me that I didn't need lube, I needed a hydrating gel, and she explained to me how to put it on. And it helps having a partner who reminds you every day that you are beautiful in this new form and you are beautiful with no hair and you're beautiful with hair. And I'm really grateful to be able to have orgasms again and to really know my body in that way to do it.

Dr. Diane Reidy-Lagunes:

So powerful. I think she's really talking to so many women out there that have had, again, similar experiences, but never had the opportunity to talk about it or share it or recognize that they're not alone. Ashley, can we talk a little bit about like the emotional piece there? And people say, you know, your biggest sex organ is the brain. Can we talk about that a little bit?

Ashley Arkema:

It really sounds like initially she was very, every time her breasts were touched, it was just a reminder of her cancer experience and the loss that she experienced sexually with not having sensation. And that's a really common, common thing that we hear. And with women that have breast cancer and that had mastectomies, it's that they kind of lose that piece. And I think it's redefining your sexual experience and getting comfortable in your body again and kind of relearning what feels good, what doesn't feel good. It sounds like she had really excellent communication with her partner, which was probably really helpful for her in the long term, and really got access early on to hydrating moisturizers and different strategies to really help with the physical symptoms that she was going through, so she was able to have a positive sexual experience after that.

Dr. Diane Reidy-Lagunes:

Jeanne, she was fortunate. She obviously said that she can achieve orgasms. But what about after treatment? There were changes obviously after her therapies that caused her ability to have an orgasm and to have sex to be more challenging.

Dr. Jeanne Carter:

Yeah, I think that's really common. We hear that a lot. I think in her particular story, one of her major sexual areas – her breasts – she lost. And that is a huge loss and touching that area can be a chronic reminder for people of their sexual experience, which can be a distraction. You're feeling pleasure and enjoyment and then you hit an area that used to have sensation and doesn't. That loss comes up so that can make sexuality feels sad at times. So it's important to sort of grieve those changes and to talk about those changes, but also expand the repertoire because there are so many other parts of the body that just may have never gotten time and attention that can really be brought in, whether it's the inner thigh, behind the knee or neck. Just trying to explore that essentially with your partner can be very healing and fun, because that's what this is. I think she highlighted something that was really important because she was a breast cancer patient and she was like, my vagina's dry, and people don't usually associate that because you're so focused on the breast area. So she was getting assaulted in two areas that are very important for sexuality. So I'm thrilled that she knew about hydrating moisturizers because they can enhance comfort for women, both for external touch, where the clitoris is, as well as any insertion into the vagina, whether it be an object, a finger, if you have a male partner, a penis. These things really are important because one, women feel very alone. I can't tell you how many times people have said to me, is it just me? And then I usually say, no, we have a whole program. So clearly there are lots of women that are experiencing these issues to try to normalize it. But also there are really great, simple strategies. People just need the information.

Dr. Diane Reidy-Lagunes:

What about the women that go through early menopause? With those hormone changes, it may be that much more challenging. Is that something you can overcome?

Dr. Jeanne Carter:

The acuity that they experience, it is not a natural menopause. I mean, menopause is a transition that takes many, many years for women. But definitely, when women go through this experience, they get an acute, compressed version that's not normal. So they may have more hot flashes than someone going through a natural menopause. The acuity of the dryness can be profoundly greater, especially with some of the therapies that we give, including radiation, the endocrine therapies for breast cancer and some GYN cancers. So you might need more assistance or you may need to use strategies more frequently than someone in a natural menopausal transition. So I'm hinting at moisturizing obviously, but if you read the box, it tells you to use it one to two times per week and only in the vagina. And we've studied that on clinical trial and we know that women in the cancer experience need to moisturize anywhere from three to five times per week and need to apply it both internally, meaning in the vagina, as well as externally on the folds of the vulva, as well as the opening of the vagina, which can be a tremendous source of discomfort with exams and for insertion.

Dr. Diane Reidy-Lagunes:

Any moisturizer in particular, that is your favorite?

Ashley Arkema:

I like Revaree. That is a hyaluronic acid based moisturizer. It's a suppository. So many of the patients I see like it a lot better because it's not messy. So you kind of just push it in with your finger and then you go to bed. It absorbs overnight. But the important thing is that you also want to moisturize the external tissues, and Replens and Hyalo Gyn are two options of moisturizers that can be used both in the vagina or externally. Those are kind of the three main products that we recommend for people to use.

Dr. Jeanne Carter:

Yeah, we used to recommend oil-based moisturizers, but we actually talked to dermatology and the oils just have a tendency to stay on the surface, they don't hydrate. And for our women, because of the acuity of the symptoms they're experiencing, they really need something that's going to pull water to the tissues to help with that elasticity, to help pump them up and give them the ability to move.

Ashley Arkema:

I would just say that if the non-hormonal moisturizers are not working for you, it's definitely important to bring up sometimes a low dose of some hormonal treatments can be helpful, and many people are candidates for this. We actually do sometimes give vaginal estrogen to people with a history of breast cancer, because we know that there's very small amounts of the medication absorbed in the bloodstream. This is all of course up to you and your oncologist.

Dr. Diane Reidy-Lagunes:

What about the role of hormone replacement therapy and other oral medications that may be helpful?

Ashley Arkema:

So, hormone replacement therapy, I really think it gets a bad rap and there's definitely an appropriate time and place to use hormone replacement therapy. For example, for younger women who have cervical cancer or maybe anal or rectal cancer, and they have radiation therapy, which puts them into menopause, these can be really great candidates oftentimes for hormone replacement, which can be really beneficial in alleviating hot flashes if you have them and even protecting your heart and your bone.

Dr. Diane Reidy-Lagunes:

I just want to get back to that communication piece. We really want the patient to get that personalized approach with their physicians, and so, clearly, the study suggests we're just not doing a good job as clinicians to have the conversation. Any advice on how we can have the patients feel empowered to again, bring it up, talk about these issues, ask if there's a team like you both, that can help lead the discussions and the treatment?

Dr. Jeanne Carter:

There's always been a struggle about when's the best time to intervene on this topic. You know, some people really do want the information before treatment so they're preparing for what could happen. Sometimes people want it in the midst because they're feeling symptoms and they're concerned, is this normal? Sometimes people can't even handle the idea and just want to get through treatment and then a year later it's coming to their attention. But I do think we have to actually remind them that there's a place where they can have these discussions. We have referrals and there is access to people even outside of our own institution. There's certified sex therapists. There's also a menopause society, NAMS, which has a listing of people who have expertise in addressing menopausal symptoms. I think we just need to let patients know that it's normal, that it's okay that you're having these issues, and then we can give them patient education information. I don't think we should just put it all on the patient.

Dr. Diane Reidy-Lagunes:

So, before the show, both Jeanne and Ashley gave me the top 10 tips to think about, and they may chime in at the end as well. Number one, reconnect to the body. Number two, comply with the suggestions. Number three, increase your sexual repertoire, which can include foreplay and other sexual acts. Number four, to think about devices. Number five, take more time. Romance trumps biology. Number six, think about the sensual time. Number seven, laughter, break the tension, lower the pressure. Number eight, be silly and be fun. Number nine, it's okay to ask questions. And number 10, help is always available. Think about the opportunities that we've discussed today that include therapies as well as medications. Ashley and Jeanne, anything else to add?

Dr. Jeanne Carter:

I would definitely say simple strategies really do work and there's a lot of simple things that can be used. Consistency, I agree with that. I love the expanding the sexual repertoire. I would also say include your partner, get some teamwork, make it fun in that way too. Ashley, any thoughts?

Ashley Arkema:

Definitely want to stress the moisturizers. Vaginal dilators can be so, so helpful. The other thing I would say, that is a great, great resource, is pelvic floor physical therapy. I think that it's so underutilized and many patients get a lot of benefit from this. So it's something that's definitely worth asking your providers about.

Dr. Diane Reidy-Lagunes:

This has been both illuminating and fun. Thank you so much.

Dr. Jeanne Carter:

It was our absolute pleasure. Thank you for having us.

Ashley Arkema:

Thank you so much for having us on the show, Diane. We really enjoyed being here.

Dr. Diane Reidy-Lagunes:

Well I've certainly learned a lot. Dr. Jeanne Carter and Ashley Arkema. Tune in for a future episode on men and sexual health. Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or to send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this help for resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. Any products mentioned are the opinions of our experts and are not a formal endorsement of Memorial Sloan Kettering. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.