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Ann H. Partridge, MD, MPH: Hello. I'm Dr Ann Partridge from the Dana-Farber Cancer Institute. Welcome to Medscape's InDiscussion series on cancer survivorship. Today we'll discuss sex and cancer survivorship. This is an important topic, although it is generally not discussed as often as it probably should be. First, let me introduce my guest, Dr Karen Winkfield. She is the executive director of the Meharry-Vanderbilt Alliance and a professor of radiation oncology at Vanderbilt University. Welcome to InDiscussion, Dr Winkfield.
Karen M. Winkfield, MD, PhD: Thank you so much, Ann. It's so great to be here. I actually was hoping we would have the intro be "Let's Talk About Sex" by Salt-N-Pepa. We should have that music playing because this is such an important topic. Thank you so much for having me today.
Partridge: I appreciate that. I did almost sing it, Karen, but it's a good thing I have a day job because you would learn very quickly, as would our listeners, that there is a reason I veered into biology and away from the chorus. As I ask each of the guests on this series, what drew you to this particular issue in your practice and research?
Winkfield: We don't talk about sex enough. A couple of years ago when I was at Harvard, there was a young woman whom I was doing some community-engaged work with. We were at a church function. She was 31 at the time and had mentioned to the church group we were talking with that she was a breast cancer survivor. She said that one of the things people didn't talk about was sex and what it was going to be like for her as a young woman who had just gone through breast cancer treatment. It blew my mind because I don't remember having any training as a medical student to talk about sexual health. I don't remember as a trainee in radiation oncology talking about sexual health for patients who had gone through cancer care. It made me think that we really need to do something different. That was for breast cancer. But I remember other patients when I was doing brachytherapy for women with endometrial cancer. These patients get the vaginal cuff brachytherapy, and we do pay more attention as radiation oncologists to these women in terms of making sure they have some support around their vaginal health. But I don't know that it continues all throughout survivorship. So it's really an important issue, and it's one we need to be reflecting on because every single treatment we give and every cancer therapeutic has some toxicity or side effect and oftentimes a sexual side effect we might not even think about.
Partridge: You hit on a really important point. This is relevant for all human beings, to be honest, and for cancer survivors, including people going through treatment. This isn't just about people who are living with the aftermath. People living with chronic cancer or going through treatment are equally survivors in terms of wanting to have full lives. Sex is a huge part of people's lives. This is especially the case, as you alluded to, in our young adult patient populations where they may just be taking off or they're in their "prime." Sex can be a bigger issue with these patients because, as we know, that's the way our society works. People are judged differently. It's not just about whether the organs work or whether they have a side effect. It's about how people feel and how they look, and of course we know that cancer and cancer treatment impacts this tremendously.
Winkfield: Absolutely. When you look at how often patients are asked about their sexual health, it's quite embarrassing from an oncology perspective. According to the literature, probably less than 30% of providers have asked the question about sexual health, even in the setting where they know or have suspicions that a greater number of patients are having these issues. I do think this is related to that bias. There may be a little more awareness, certainly, for patients who are going through therapies that might impact their fertility at a younger age. We talk about fertility, right? Oftentimes, sex might be part of that conversation. But what about for older adults? Sometimes we're biased in that we say they're older, so we don't need to have that conversation. But look, as I get older, I think this is something we need to start asking all of our patients, regardless of what they look like or what their interest is in the topic, and make sure we can send them to resources that may assist them.
Partridge: You make a really good point about not neglecting any population because sex is a huge issue in all of our survivor populations. Are there specific populations that have more need or where we should address things more proactively? However, I do agree that everybody should be screened for this and it should be brought up. You talked about the gynecologic malignancy patients who are getting radiation, in particular. One of the things our sexual health experts tell us is that just handing someone a bag of dilators and saying to use them is not good enough. That still happens. At least clinicians are handing out the dilators. But are people being informed about sexual health? How do we help those patients or at least the systems to better educate people and support them?
Winkfield: It's such an important question. As medicine changes, we've moved away from having the providers be the ones who are doing long-term survivorship care. There's education that needs to be done, particularly downstream (with future providers), if the clinician who has treated a patient is no longer going to be handling their survivorship care. Maybe that transition happens 4 months out, 12 months out, or 24 months out. Regardless, this issue of sexual health is one that has long-term consequences. We need to continually be asking these questions. If there's a survivorship provider who's going to be handling those survivorship questions, whether it be an advanced practice nurse or other provider or a physician assistant, we need to do education because that's one of the issues. I didn't get a whole lot of education around sexual health and well-being and topics we might need to address with our patients. I imagine even more so there needs to be education for individuals who might be taking care of patients after active therapy. We need to make sure our primary care doctors are educated on these issues, but we also need to empower patients to ask the questions. This is their body. They're the captains of their body. Sometimes they may need to be upfront in saying they want to talk about this issue that is meaningful to them. But we also need to have awareness that for some cultures, it's not appropriate to talk about these issues, or they haven't talked about sex even in general while growing up. Even more so with their providers, there may be some hesitancy to bring up this topic that absolutely impacts their patients' health and well-being because of cultural issues.
Partridge: Do you have suggestions on how we do this with someone? I realize there are lots of biases that we as providers bring to the table when we address some things with patients. Do you have suggestions for when you get the sense that it's a taboo area for someone, but you want to make sure they're okay? How do you do that?
Winkfield: The first thing you do is ask the question. There are two things: We need to reprogram ourselves as providers to ask the question regardless of who is sitting in front of us. Say, "How's your sexual health doing?" And if there's a blank stare, ask, "How about your intimate health? How is your intimate well-being?" Because here's the thing — not everyone has sexual intercourse. Intimacy is impacted by cancer therapeutics. You think about some of the side effects and toxicities of our treatments, whether it be immunotherapy or surgery, etc., that can impact our physical well-being. It's not just about the act of having sex — there's the intimacy piece. There's also fatigue — sometimes people are too tired to be intimate, and intimacy might be going to dinner with friends. We're not always talking about the act of intercourse. It is really important to ask people if their quality of life is being impacted when we ask people about their sexual health, intimate health, or well-being. It's something we need to do as providers. Opening up that conversation may allow individuals who are from a background where this is a taboo topic to say, "Actually, I'm having a little bit of an issue with intimacy." Then we ask them to tell us a little bit more about it. If they get shy, make sure there's nobody else in the room. Because sometimes they need to have that space to have a personal one-on-one conversation without an audience in the room. It is also helpful to educate staff. Nursing staff can sometimes do a little better job than the doctors. Some patients still see that hierarchy in the doctor-patient relationship. Sometimes having a nurse or an advanced practice provider come in can help. It's important for your team to have awareness around this issue. It was one of the things we did in radiation oncology when I was at Massachusetts General Hospital. There's unfortunately a bit of a bias in terms of how often women get asked about their sexual health vs men. But there were men in the prostate cancer clinic, and we had our nurse practitioner go in and ask the questions. She was a woman. Believe or not, she had a much better opportunity to ask those questions because she had more time. It was a specific conversation that she was well educated to have with the men who were in that practice. Asking the question is important regardless of what that person looks like or regardless of whether you think there might be a taboo. But if you notice there might be some hesitancy, this is where we use our skills as providers. We ask the patient if they are uncomfortable with it. It's okay to ask the questions, but it means we need to be looking at people. And I find a lot of providers are sitting on their computers typing. The practice of medicine does require taking time to allow patients to have that space and letting them know you're concerned. That takes a bit of eye-to-eye, face-to-face contact.
Partridge: Yes. Open the door and allow them to talk or not. I routinely ask patients these questions and sometimes I ask so often that people think this is the only thing I do. I'm probably in the extreme. But I think it's so important. One patient looked at me and she said, "I think you Americans care more about sex than we do." She was stereotyping. I told her I didn't know about that. I think plenty of cultures care about sex.
Winkfield: That's why, again, not just framing it about sex and sexual intercourse and thinking about intimacy may be another way to approach this conversation. Because intimacy goes beyond just sexual intercourse. It is the interpersonal relationships. To me, that's part of sexual health. That conversation brings in fatigue and relationships.
Partridge: That's great. Do we see specific problems in some of our minority communities, whether it be racial and ethnic minority groups or the LGBTQ+ population or other groups? What are the data out there, and how can we help in that arena?
Winkfield: There certainly is the cultural piece when it comes to communities of color. That's where having the insight as providers to ask the question and open up that conversation will help because there is some stigma that's attached to having conversations about sex. Some of it is based on religion where it's a taboo topic to discuss. We know there are disparities across the board, particularly for African Americans and definitely for Hispanic people or people who are non-English speaking with respect to gaining access to resources. So you as an oncologist or a provider may not feel like you have the expertise, or maybe the patient needs some additional counseling. For instance, let me give you an example. The patient I mentioned who was a breast cancer survivor was very open talking about her issues related to her sexual health. Her biggest issue was body dysmorphia. The surgery left a scar.
Partridge: Inside and out is what I tell people when we talk about it.
Winkfield: Yes. For her to have to be reminded every day that she went through cancer treatment was difficult, but it also impacted how she interacted with other people — despite the fact that when she's fully clothed, you wouldn't know. This is where these issues can be so silent, and silence is deadly. This is where it's really important to talk about these things. But know that body dysmorphia is difficult. As an oncologist, I'm not prepared to help somebody with that. We as clinicians need to make a referral to psychiatry or to some sort of counseling service to help people deal with those issues. This is where unfortunately, I think communities of color are going to suffer more because they don't have access to healthcare in general. We know Black women don't even get referred for radiation therapy the way they need to. You can imagine a specialty service or sex counselor — that's probably going to fall by the wayside. Then think about patients for whom English might not be their primary language. Here, we're talking about that cultural piece regarding just even having the conversation. What if English is not their preferred language? They speak English with you and can say they're having some issues, but what if they really want to have a discussion about their sexual health with someone who speaks their native tongue? That's a major challenge. The other thing you mentioned was the LGBTQ+ community. The trans community is one of the most underserved communities across the board when it comes to cancer care. There's a lack of understanding about who they are as individuals and how to ask what their preferences are, how they would like to be referred to, what their pronouns are, and these sorts of things. We're getting better. But if an individual has a prostate, there needs to be discussions about prostate health and sexuality. If an individual has a vagina, that needs to be discussed. If there's been surgery, the issues around sex and sexual health need to be discussed. As an oncologist, I think there are lots of clinicians who would be very uncomfortable having a conversation with the LGBTQ+ community about this.
Partridge: You mean the oncologists providing care?
Winkfield: The providers. We're going to struggle.
Partridge: Also, these conversations take time. You have to actually be in the room with the person and be willing to spend a little time on this. Not to blame or point fingers in other directions, but in our current system, it is challenging for our colleagues to fit all this stuff in when they're trying to make sure their patients are also not having a recurrence or they're managing toxicities. The implications of sexual dysfunction and larger intimacy and body image issues are going to take a huge toll on people's mental health and their families and loved ones. It's often impacting more than just the patients.
Winkfield: Absolutely. You bring up a good point. There was a survey of oncologists that asked how they are doing with sexual health in these conversations. The oncologists said the patients they were seeing have other problems that the oncologist considers more important. It doesn't mean the patient considers them more important. But the provider thinks, "Wow, this person has metastatic disease, and I'm handling that. I don't have time. Issues related to sexual health are secondary," or "I need to make sure my patient is taking their aromatase inhibitor." The second most common reason why these conversations are not had is time. So to your point, when you're trying to stuff relationship building and all of that into a 20-minute conversation, it's really difficult. This is where creating a team and having advanced practice providers or other providers to assist would be helpful. Even if they just ask patients the question, "Do you have any concerns about your sexual health?" If they do, point them to the resources we have. It doesn't mean you have to always be the one to counsel patients. Asking the question takes 2 seconds.
Partridge: Yes. And plugging them in to resources. You're reminding me that we developed an intervention for our young women with breast cancer. We enrolled 30 patients. We did a small pilot study where we used a web-based portal to help support women in self-managing some of their symptoms and concerns. We enrolled 30 people. Ten had metastatic disease, 10 had early-stage disease and were early on in treatment, and 10 were living as survivors with NED, or no evidence of disease. Guess what the most-endorsed, across-the-board symptom or concern was for all three groups, whether they were living with metastatic disease, newly diagnosed, or survivors?
Winkfield: Was it sex?
Partridge: Yes. It was their sexual health. All the patients triggered the sexual health information that they get fed back in the portal where we track them over time. We don't have those data, but it's fascinating that this is pretty ubiquitous. These are women 45 and under at diagnosis or living with the disease. I would imagine if you pooled a group of prostate cancer survivors or people living with disease or lung cancer patients, they are suffering from other things, but they still want to have good sex.
Winkfield: Right.
Partridge: Which is what I've told my colleagues when we focus on this in education forum.
Winkfield: Yes. Absolutely. To your point, it's across the board. It's not specific to cancers that impact the sexual organs. Breasts are a sexual organ, folks. We've got to get it out of our head that breasts are just there to feed babies. It's important to remember that the breasts are a sexual organ in addition to the genitalia. I think about patients who have sarcoma. What if you lost a limb? What does that do to how you're thinking about yourself and your body and what your concerns are related to your partner? Even the partner counseling can be an important thing that we oftentimes don't think about. We're not treating a patient's spouse, but their spouse or partner is really important to their well-being. I love the fact that we're having this conversation because it's one that we need to do a better job of focusing on. I sometimes like to use the word intimacy vs sex. But you're right. There is this human need for sex. Do we have education around orgasms? These are things that, frankly, I didn't get any education on. I think we're doing better. There was an article that came out in which fellows and trainees were interviewed, and some are getting some training on sexual health, which is great, including the importance of orgasm for populations. For the sense of well-being, these are important quality-of-life topics we need to discuss.
Partridge: What are the resources we can steer patients toward or providers toward to better support their patients?
Winkfield: I love that you're talking about resources. It's vital because we are overwhelmed as providers. Oftentimes, there are so many things going on and so many things we have to do. Then we say, "Okay, now you want me to know how to counsel someone on sexual health?" No. That's not the point of this discussion. The point is if we can ask the questions and point people to appropriate resources. I want to highlight that there are so many factors going into this sense of lessening sexual desire or the changes in terms of enjoyment of sex or intimacy. They include fatigue, menopausal symptoms, and chemotherapy that may impact ovarian or hormonal functions. There's anxiety. There's fear. Even the fear of recurrence can impact a person's sexual desires. There is depression and weight gain, which we definitely see in our breast cancer patients who are going through hormonal therapies. There's grief that is associated with just having a cancer diagnosis. These are all components of survivorship, irrespective of whether a patient is still in treatment, they have metastatic disease, or their therapy is ongoing. These are all components of survivorship we've got to pay attention to. They impact other areas of a patient's life but certainly impact sexual health, as well. In general, as oncologists, the survivorship piece seems a little unwieldy because there are so many components to it, and this is where having that team approach is really important. Who's on the team? Who can you point people to? Who can you send them to for support and resources? The first thing I tell providers is to understand what resources you have at your own institution. Do you have a social worker who might be able to help? Remember, social work is not just about transportation. Social work is counseling. It's psychosocial. We oftentimes don't use our social workers to the top of their licensure. There's an opportunity there. Do you have a sexual health clinic at your center? That's another resource. Identifying what resources you have available at your institution is always, from my perspective, the number one thing to do. You mentioned you had developed this online resource. There's a lot of information from patient advocacy groups that is phenomenal. So online resources are the second thing. I'm going to point out one — a group called Living Beyond Breast Cancer (LBBC). I happen to be on their medical advisory board.
Partridge: Me too.
Winkfield: You know LBBC. They have a fantastic cadre of information around sexual health. They talk about sexual health and intimacy and partners and how to have conversations with your partners. There's a wonderful provider there, Dr Sage Bolte. I'm not sure if you saw her video where she's talking to a roomful of women who have had breast cancer about the impact of their disease on sexual health, how we interact and think about our bodies, and how we interact with loved ones. I loved it. I thought it was fantastic. I want to point that out as one resource. The other thing to mention is, I have a podcast called 3 Black Docs. We talk about all sorts of topics. We oftentimes will have guest speakers and survivors come on and talk about the things they went through and some of the resources they had. The reason why we started the 3 Black Docs podcast is because we wanted Black individuals, Black families, and Black communities to know there is a way to talk about this big C word, cancer, in a way that doesn't have to provoke fear. Sometimes having the conversations before there's an issue is important. We do this kind of planning in other areas of our life, but oftentimes with our health, we don't. We wanted to create the 3 Black Docs podcast — and it's available everywhere — for communities, families, and particularly the Black families and communities to realize they can have conversations about health and well-being that may be a little weird but important. We also share our personal stories. I talked about my colonoscopy and how that was because we want people to know that while sometimes these topics can evoke fear or seem taboo, it's important to talk about them.
Partridge: That's fantastic. I'm going to tune into your podcast next. Today on this podcast, we've talked with Dr Karen Winkfield about sexual health and opening the door with a conversation so we can address it with the patient and plug them in with resources, either in their cancer center and community, on the internet, or through advocacy groups. Thank you so much for tuning in. If you haven't done so already, take a moment to download the Medscape app to listen and subscribe to this podcast series on cancer survivorship. This is Dr Ann Partridge for InDiscussion.
Resources
Cancer Survivorship Guidelines
Sexual Health and Cancer: What Providers Need to Know
Vaginal Dilator Use to Promote Sexual Wellbeing After Radiotherapy in Gynecological Cancer Survivors
Sexuality After Cancer as an Unmet Need: Addressing Disparities, Achieving Equality
Health Outcomes of Sexual and Gender Minorities After Cancer: A Systematic Review
Sexuality and Intimacy After a Breast Cancer Diagnosis
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Cite this: Let's Talk About Sex: How Can Doctors Approach the Challenging Conversation of Cancer Survivorship and Sexual Wellness? - Medscape - May 25, 2023.
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