Sexual Health Side Effects From Breast Cancer Treatment

Jamie DePolo: Hello, thanks for listening. Our guest is Dr. Sarah Tevis, assistant professor of surgical oncology at the University of Colorado School of Medicine at the Anschutz Medical Campus. Dr. Tevis treats all breast diseases, including benign breast conditions, DCIS, and invasive cancer. Much of her research focuses on psychosocial and physical well-being throughout and after breast cancer treatment.

She recently conducted a study that found that many women who receive breast cancer treatment have side effects that affect their sexual health. While doctors usually talk to women about possible fertility and menopausal side effects, other common side effects including vaginal dryness, body image issues and lack of desire aren’t mentioned.

The results also showed that women have specific preferences on how this type of sensitive information should be presented. She joins us to discuss this study. Dr. Tevis, welcome to the podcast.

Dr. Sarah Tevis: Thanks so much for having me.

Jamie DePolo: To start, so everyone is kind of familiar and has some background, could you tell us why you decided to do this study.

Dr. Sarah Tevis: Like you mentioned, I have an interest in understanding quality of life during breast cancer treatment. And so, beginning in 2019, we started measuring quality of life for our patients at the time of diagnosis and then throughout treatment, using a survey called the BreastQ Survey. 

One of the four domains of the BreastQ Survey is about sexual health, and one thing that stood out to us very early on was that when women first presented to our clinic with a new cancer diagnosis, their sexual well-being was their lowest quality of life domain and throughout treatment it continued to decline, because a lot of the treatments we use to address breast cancer affect sexual health.

That led us to survey our patients and then hold these focus groups to better understand what symptoms the patients are having and how we can better support them through education.

Jamie DePolo: Okay. Thank you. And it sounds like, if I understood your answer there, so sexual health was already low in the whole quality of life scheme, and then during treatment it just got lower. 

Dr. Sarah Tevis: Exactly. It was lower. At the time of diagnosis, sexual health was lower for most of our patients than physical health, psychosocial health, and how they felt about their breasts.

Jamie DePolo: Okay. Thanks. So, what were the results? What did you find?

Dr. Sarah Tevis: So, we found that sexual health side effects during breast cancer treatment were incredibly common. Ninety-three percent of the women we surveyed were having some symptoms, and we found that the most common symptoms were decreased sexual desire, vaginal dryness, and less energy for sexual activity. But there were a wide range of symptoms that women were experiencing. 

And I think the really important thing that we found was that the sexual health symptoms that our patients were having were impacting their mental health and their relationships with their partners. And the patients told us that we did a really great job about talking about menopausal symptoms and fertility issues but that we didn’t always address some of the other issues like body image and how they’ll feel about their bodies after treatment or during treatment.

Jamie DePolo: Okay. So, why do you think that is, that maybe doctors don’t discuss the sexual health issues, vaginal dryness, body issues, lack of desire. Is it because it’s too personal?

Dr. Sarah Tevis: Yeah. I think when patients come in for that first visit, and we heard this in our focus groups, everyone, the doctors and the patients, are so focused on what does this new diagnosis mean, what is my treatment plan going to be, and our patients told us that that’s actually a terrible time to talk about sexual health because everyone is focused on all of that: planning, treatment and understanding the diagnosis. 

And I think after that it’s something that just isn’t on anyone’s radar. We don’t have a system in place, at least at our institution, for following up with patients and having who is the point person that’s going to follow up with the patient and ask about things like sexual health or quality of life. And so, unless patients bring it up, or unless we’re discussing it as a specific side effect of treatment, I think it gets kind of swept under the rug.

Jamie DePolo: Okay. And did you at all look at whether the doctor was a man or a woman? Did that seem to affect the conversation at all?

Dr. Sarah Tevis: We didn’t look at that. That’s an interesting question. Something we could look at in the future, but we did not assess that.

Jamie DePolo: Okay. And also, it sounds like to me, and maybe this is because I’m sort of hyper aware of everything that patients have to do. You know, you talked about unless patients bring it up it doesn’t really get discussed because obviously the doctor is focused on treatment and how is the cancer responding to the treatment. So, in one sense, it’s kind of putting one more thing on the patient that the patient has to remember to bring up. I guess I’m wondering what your reaction is to that. Do you think that’s accurate?

Dr. Sarah Tevis: I think it is accurate. We have studies in the literature that have shown that patients prefer this topic to be raised by the medical team. Patients don’t like bringing up sexual health. And I’ve just anecdotally since we started studying this, I’ve really tried to incorporate it into my practice, talking to patients about sexual health, whether it’s early on after diagnosis, whether it’s when they have their surgery, or if I’m seeing them after surgery. And I think what’s been really interesting is I have brought this topic up and many of the patients that I have talked to are having pretty significant symptoms, but they didn’t tell anyone until I specifically asked about it.

And so, I think, I think patients are so focused on treating their cancer, that it’s not in the forefront of their mind and maybe they don’t realize how important it is and how we can help them through those symptoms if we have that discussion.

Jamie DePolo: Yeah. Do you also think that maybe it’s just a, as you say, it’s a sensitive topic. So, maybe they’re just a little uncomfortable even bringing it up? Maybe they don’t think they have the right words to describe it?

Dr. Sarah Tevis: Yeah. And I think they don’t really know if it’s, you know, if that’s just how it is during treatment and there’s nothing to be done about it. I think another issue that came up in our focus groups is that we encourage patients to bring family members with them to visits, so that they have another set of ears to hear the information. And depending on who those family members are, they may not feel comfortable having those conversations in front of family.

Jamie DePolo: Sure. That makes total sense. Now what about timing? You had said earlier that both doctors and the women said at that first treatment planning session that’s a terrible time to discuss these kinds of side effects. When is a good time? Like when were women comfortable? Was it soon after that? I’m thinking that if it goes on for a while, then that’s maybe too long.

Dr. Sarah Tevis: That’s a great point. Women in our focus groups, basically the summary was early and often. And so, that’s one of the reasons we chose to move forward with a video series, as opposed to like an in-clinic intervention, because we felt like it was something we could give to patients very early on and they could access it when they were ready and access whatever sections of the videos were pertinent to them. 

So, I think it is important for women to have that information early because it may influence their treatment decisions, or it may prepare them better for what to expect when they start a specific treatment.

Jamie DePolo: Okay. So, tell me a little about the videos. Is it…are they basically doctors explaining the symptoms? Did you talk to patients? What are they?

Dr. Sarah Tevis: All of the above. I think the…I think the highlight of our videos is going to be patients. We’ve been really fortunate throughout this entire project to have very engaged patients. And so, some of the patients from our focus groups have continued to be involved in our research and development of these videos because they feel it’s so important for future patients to have these resources. 

And so, we’ve been really lucky to have a really engaged group of patients that helped us develop the videos and have agreed to be filmed in the videos. And so, I think that will really resonate with patients. And then, we also have members of our multidisciplinary team, doctors, psychologists, physician assistants, and others that are going to participate in the videos talking about kind of four main topics. 

So, we’re going to review what to expect with breast cancer surgery and how to prepare for that day of surgery and recovery. And then we’re going to talk a lot about the expected sexual health side effects of treatments and some mitigation strategies patients can do at home to improve those side effects. And then finally we heard from patients that they really wanted information about how to talk to their partners, just communication, about intimacy. 

We had patients who had questions about dating, how to start dating during or after breast cancer treatment, and just have those conversations with people about their diagnosis. And so, those are all things we’re hoping to cover and we’re hoping all of the videos will be broken out into short little one- or two-minute, easily digestible video clips that patients can access.

Jamie DePolo: Okay. That sound great and sounds like something that’s definitely needed. Could you talk a little bit more about how different groups of women wanted to receive the information? Like what form. Like the videos sound great but I know some people maybe would rather read something. I think most of the women in your study were white. 

So, do, you know, do you think these results, are they applicable to a lot of different groups or does more research need to be done? Did…do older women like a certain type of medium? Do younger women, maybe they like videos better. I don’t know. That’s a very large question. Sorry.

Dr. Sarah Tevis: Oh. No. I think those are all really good questions. We are currently expanding a lot of our research studies that we’ve been doing at the Anschutz Campus to Denver Health, which is one of our safety net hospitals. And so, I think that will be a good opportunity for us to share the videos with a more diverse group of patients to make sure that they are applicable to a broad range of women. 

In terms of what types of resources patients preferred, it wasn’t really based on age, but we did have patients who kind of preferred things they could do on their own. So, reading or videos that they could watch at home. Patients like the idea of videos because they thought they could watch them with a partner, or you know, a significant other. 

We had other patients who really like wanted a one-on-one interaction, whether it was with a member of their clinical team, or we have a really great sexual health consultation service. And then, we had some groups of patients that really seemed drawn to more group activities. So, workshops or support groups. One thing that came up in the focus groups was that patients thought for those group activities, they prefer to be with patients more like them. 

So, if they were post-menopausal and married, they wanted to be with that type of patient population as opposed to women who were, you know, younger and had, you know, growing families. They wanted to be with patients that were more similar to them. Which makes sense because I think they would have unique concerns and things they would want to talk about.

Jamie DePolo: Sure. That makes sense. Obviously, a younger woman is more likely to be concerned about fertility, older women not so much. So, okay. That makes good sense. Now do you think if women get this information, say they watch the video or they participate in a focus group, I’m wondering, and your research may not have looked at this, but do you think that makes them then more likely to feel comfortable bringing it up with their doctor? Like if they’ve seen the videos, talked to other people, it’s like okay, I can…I can talk about this now. I’m comfortable.

Dr. Sarah Tevis: That’s what we’re hoping. We’re hoping that they’ll not only educate patients but empower them to feel more comfortable talking about these topics, and as you mentioned earlier, maybe giving them the language to describe what they’re experiencing. And we also hope with the videos to provide links for other local resources like support groups and workshops and things like that. 

And so, we’re hoping the videos will be an educational tool but will also really be a conduit for patients to seek care if they’re having significant symptoms, equip them with the language to describe what’s happening, and then we’ll give them specific situations where we recommend that they, you know, stop trying things at home and actually reach out to their healthcare team.

Jamie DePolo: Okay. And then finally, you’re in Colorado, which is great. But I know all of our listeners are not in Colorado. So, would these videos be available to folks outside of your medical system? Are they just going to be online for everyone or do they have to be a patient there?

Dr. Sarah Tevis: So, initially we’re going to take the videos back to our patients who helped us develop them, so that we make sure that they are appropriate and have the…the information that patients really wanted. And we’re working with a really fantastic nonprofit group Catch It In Time that’s committed to helping us develop the videos in a user-centered fashion, so that they really are the best possible resource for patients. And once we have them finalized, we will make them widely available online.

Jamie DePolo: Oh. That’s great. That’s great. And when do you anticipate? Is there a completion date?

Dr. Sarah Tevis: We’re currently editing the videos, so we’re hoping in the next few months that we’ll be able to take them back to our patients and get more feedback and then if we need to make any changes do that. So, I’m hoping at the latest by early next year. 

Jamie DePolo: Okay. Great. And so, if somebody were interested early next year in watching them, would they just Google University of Colorado Medical School, breast cancer?

Dr. Sarah Tevis: Yes. So, the videos when they are complete will be housed on the Colorado Program for Patient Centered Decisions website.

Jamie DePolo: Okay. Perfect. Dr. Tevis, thank you so much. This has been really helpful and informative. I appreciate your time.

Dr. Sarah Tevis: Thank you so much for having me.