Black Women and Hormonal Therapy Sexual Side Effects

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: Hello, Thanks for listening. 

Many people diagnosed with early-stage, hormone receptor positive breast cancer are prescribed hormonal therapy medicine – tamoxifen or an aromatase inhibitor – for five to 10 years after surgery and other treatments, but we know that up to 25% of women don’t take the medicine as prescribed or stop taking it early, mainly because of side effects. Research shows that Black women are more likely than white women to have certain hormonal therapy side effects, which may be why they’re also less likely to complete the full course of treatment.  

Our guest today is Dr. Janeane Anderson, assistant professor of community and population health at the University of Tennessee Health Science Center. She helped analyze information from the THRIVE trial, which found that sexual side effects caused by hormonal therapy led to lower mental quality of life in both Black and white women, but caused lower physical quality of life only in Black women. Sexual side effects were also linked to Black women being less likely to take hormonal therapy as prescribed, but not white women. She joins us today to talk about the results. Dr. Anderson, welcome to the podcast. 

Dr. Janeane Anderson: Thank you. Thank you for having me.  

Jamie DePolo: So to start, how did you come to study this topic? Had you talked to various women and noticed differences in how Black and white women were experiencing hormonal therapy side effects? 

Dr. Janeane Anderson: I was actually a post-doctoral scholar when the THRIVE trial that you mentioned was getting started. And during the initial development of that randomized control trial, I was able to conduct focus groups, along with other members of the team, with Black and white women with early-stage breast cancer around their patient-clinician communication, their experiences of the entire breast cancer experience, including their management of adjuvant endocrine therapy symptoms. And during those focus groups, I noticed that women, particularly Black women, were more likely to discuss the adverse sexual side effects that they were experiencing and lament about the kinds of patient-centered, open discussions that they were having, or actually not having, with their clinicians. 

Sexual health has always been an interest of mine as a researcher working in HIV-AIDS and adolescent sexual health. And so, I’ve always been interested in the ways in which individuals experience their sexual health, dysfunction, pleasure, and otherwise, along their life course. So, when I started researching breast cancer, I didn’t stray away from my love of sexual health and have found that sexual health is a significant – if not one of the most primary, Jamie – unmet needs among survivors of breast cancer, regardless of race.  

And so, the results we’re going to talk about later around racial differences are part of the nuanced conversation about breast cancer survivors are not having their full sex and sexuality addressed by their clinicians and many are suffering unnecessarily with the really tough symptoms. 

Jamie DePolo: That makes me want to ask you two questions. One is, I want to talk about some of the sexual side effects that people were experiencing, the most problematic. But I’m also wondering, because I know that research shows that Black women tend to be diagnosed at a younger age than white women. So, I’m wondering if that kind of also plays into the sexual side effects being more problematic for them. And I could be generalizing here, but I’m assuming that sexual side effects might be more important to a younger person than an older person, and that’s probably terrible, but because I feel like everyone should have good sex, but I’m just wondering if maybe it’s just a little bit more important to younger people. 

Dr. Janeane Anderson: You know what, I’m actually glad you made that comment, because it’s twofold. The results that I’m describing right now are going to be part of a manuscript that I’m soon to submit for publication. So, I’m only going to give a little hint that we do find that younger women, younger Black women, but not younger white women, are distressed by the sexual symptoms.  

And so, I will hope that your readership will tune in when the paper is published to get to more insight into those findings. But I do want to address this idea about sexual health, sexual dysfunction among older Black women, because you make the point that I think a lot of people assume, a lot of people, clinicians included, that when a woman, including a woman diagnosed with breast cancer, is of a particular age, 65-plus, that her sexual pleasure is no longer important to her. And I actually published a paper last year speaking to that very barrier to sexual health discussions and symptom management among older Black women. This idea that a robust sexual life is now not important to older Black women, and clinicians, and the perception that some Black women have that they think their clinicians think that they should stop having sex, that that’s something that should have been advocated or left to the wayside a long time ago. 

So, to speak to your direct question, like we are seeing age as a driver of the ways in which women experience adverse sexual symptoms from their adjuvant endocrine therapy. But just because a woman is a younger woman or on the other side just because a woman might be older, doesn’t mean that, A, she’s not distressed by the symptom burden, and B, that she’s not interested in maintaining a robust sexual health life well into the end of her life. 

Jamie DePolo: Okay. Thank you. Thank you for that. And I apologize if I’ve offended anyone, but I didn’t want to, but I feel like as you said, that sort of perception is out there. So, I thank you for addressing that.  

Dr. Janeane Anderson: If I may really quick Jamie, I think for the listeners, like, I’m hoping once again that no one is offended, but this conversation empowers women regardless of age to start to have the conversations with family, friends, and their healthcare providers, oncologists, primary care clinicians, and their gynecologists around sexual health preservation. And so, because we know that we live in a culture that oftentimes privileges youth and [virility] around sexual health. I think that there may be listeners who thought, well I’ve passed the prime of my sexuality, and so my adverse symptoms are just part of the aging process. 

They may not even attribute them to the symptoms, I mean to the medication. And so, I actually want to use this as an opportunity to say that aging doesn’t have to mean lack of sexuality.  Unfortunately, we find that the medication does adversely impact people’s sexual health. 

Jamie DePolo: Okay. Thank you for that, too. Let’s talk about some of the specific sexual side effects. Like, what are the most problematic ones that women are experiencing? 

Dr. Janeane Anderson: What I hear in my research of qualitative and quantitative as well as other scholars, is that women are most bothered by vaginal dryness, most bothered by a loss of libido or a loss of interest in sex, and painful intercourse or dyspareunia. And so, those are the adverse sexual symptoms related to AET [adjuvant endocrine therapy] that women are most likely to report. We also hear things like orgasmic disruption, vaginal discharge, and just an overall sense of kind of sexual malaise, I guess, and those coincide oftentimes with mental health challenges like anxiety and depression.

Jamie DePolo: Of course, because if you’re anxious and depressed, you probably don’t want to have sex or you’re not feeling very sexy either. So, yeah.

Now based on what you’ve said, and from some other researchers I’ve talked to, it seems like communication between the doctor and the woman with breast cancer is one of the most important things that can help address these side effects. Because I know there are treatments and techniques, and I’m not just talking medicine. We’ve seen that things like exercise, acupuncture, things can help. But I also find that sometimes women are reluctant to bring this up with their doctors.  

Maybe they’re embarrassed, or as you said maybe they think this is just part of my treatment, this is just part of my life. I’m 75 now. So, this is the way I feel. So, what’s your take on that? I know that a lot of your research focuses on doctor-patient communication. So, tell me your thoughts and how you advise women about this. 

Dr. Janeane Anderson: That is my area of expertise and I’m interested in the patient-clinician relationship because as you said, Jamie, it is a significant driver in patients’ symptom management and clinicians’ ability to prescribe, as you said, pharmacological or non-pharmacological interventions that may alleviate symptoms.

Research overwhelmingly, mine, others, over now 20, 30 years, is suggesting that patients, women diagnosed with breast cancer, want their oncologist or another healthcare professional to initiate these conversations and that’s important. They want their clinicians to initiate conversations about sex, sexuality, and sexual health for several reasons. 

Number one, it assures the patient that discussions of sex and sexuality are okay during cancer survivorship. I think so many unconscious messages that women receive is that they should be, A, grateful to be alive, and that they should be focused on more important things, like family or friends or getting back to a quote, unquote, “sense of normal.” And sexual health is just something on the periphery. It’s some sprinkles, if you will, but not necessarily something that they should bother their clinicians about or that they should even be spending much time thinking, and I’m here to say that’s wrong. Like that’s erroneous.  

Like, a woman who wants to talk about her sex and sexuality, regardless of age, should be given the environment in the clinic space where that is made normal. When you normalize communication about sex and sexuality, it allows the patient to have more candid discussions about their concerns. It privileges the notion that this is a relevant symptom to be discussing. It removes shame and judgment and guilt that may be existing. It allows for a better patient and clinician relationship. And ultimately we know it’s going to lead to better patient outcomes and, what I found in my research, reduce the likelihood of AET non-adherence. 

And so, I would say oncologists and other healthcare professionals when they initiate these conversations about sexual health in a real genuine, probative, patient-centered way, not just is there anything wrong or is there anything you want to talk about today, because those generalized questions don’t always trigger to patients that the clinician is directly asking about sex and sexuality. So, clinicians must directly, explicitly ask what their patients are experiencing, any challenges they’re experiencing, and how they can maximize their pleasure during survivorship. 

Jamie DePolo: Now what if a woman has a doctor that doesn’t bring it up? You know, how should she proceed? Especially, I guess I’m wondering, if she gets some vibes from the doctor that the doctor isn’t really comfortable discussing it? So, how do we deal with those situations because I’m sure they’re not uncommon? 

Dr. Janeane Anderson: Absolutely, Jamie. You’re hitting the nail on the head. Women oftentimes report that they do not initiate conversations. I have a paper where I published where Black women said, you know what, it’s my responsibility. My health is my responsibility, so if my oncologist doesn’t initiate these conversations, I will. And in that paper, women talk to me about the discomfort, the physical, palpable discomfort that their clinician showed when older women broached the topic of sex and sexuality. And so, my advice to listeners who may have a clinician who they perceive is a bit uncomfortable about engaging in these conversations, to remind your clinician that this is a symptom that is well known as a symptom of AET.  

This symptom didn’t catch your clinician by surprise. You are not alone by far in experiencing these symptoms. Just like we know that women experience weight fluctuations, hot flashes, you know, insomnia or sleep or mood differences. So, these sexual symptoms are part of just the symptom category or for lack of a better word like the symptom constellation associated with AET. Remind your clinician that this is a normal symptom to be discussing.  

Also remind your clinician that this is important to you. If it’s important to you, it should be important to a clinician who’s caring for you. And if that still doesn’t get you the kind of communication you like, I would suggest that there’s usually other healthcare professionals. Women talk about talking to a nurse or a nurse practitioner, or a patient advocate, or a nurse navigator, or someone else in the oncology care team that can help kind of scaffold the communication between the patient and the oncologist if that direct one-to-one is not yielding the kind of results that the patient would like.  

Press your oncologist. Don’t let them off the hook. Their discomfort should not come at the expense of you getting the care that you want. 

Jamie DePolo: Okay. That is great advice. I’m curious if anyone has done this research, is it more likely to happen if the oncologist is male and it’s an older woman, regardless of ethnicity, background. Again, I’m stereotyping here, but I feel like maybe men have a more difficult time  talking to older women about sex than a woman would. 

Dr. Janeane Anderson: Of course they do. And I chuckle and it really isn’t funny so forgive me. Maybe that’s nervous laughter for your listeners. The research I have done and others have done suggest…well, I’ll speak to the research I’ve done, specifically, because I’m a qualitative researcher, so I’ve had the blessing, and I call it a blessing, to talk to now nearly a hundred women in research and informally around their breast cancer survivorship experience. And the theme comes up over and over again that patients perceive easier communication about sensitive topics, sexual health being at the top of that, when there is both race and gender concordance.  

And so, what that term means is that when the patient is similar to their healthcare provider, their oncologist, in terms of both race and gender, that seems to be the sweet spot. If, for instance, a Black woman has a Black female oncologist, my research suggests that those conversations about sensitive topics seem to be ones in which the patient feels most at ease. We know though, because of the nature of the racial ethnic breakdown among U.S. clinicians, that most patients of color are not going to have a race and gender concordant clinician. 

So, in those cases, my research has found that gender seems to be the more salient driver.  Meaning that women diagnosed with breast cancer report more ease discussing sexual health symptoms if their clinician is female, white, Black, or another racial ethnic category. So, I think in those instances what happens in the clinic setting, Jamie, oftentimes mirrors what happens outside. We like to talk to our best girlfriends about things that are bothering us. It’s part of human communication patterns that we feel more comfortable disclosing sensitive topics with people who share values and identity markers that are similar to ours. 

And so, the oncology setting is no different. I think what we have to empower our patients, is that when you have an environment in which you feel some level of closeness to your clinician, even if that closeness is not on the basis of race and gender, maybe it’s a shared religious belief, maybe it’s a shared hobby, or a shared background, or shared travel experience. I encourage patients and clinicians to find those areas of sameness where there can be connection outside the fact that the patient came to the oncology setting for care.  

I think that starts to level the power imbalances that happen in the patient-clinician relationship, where the clinician is oftentimes leading the conversation, making the decisions, and we’re trying to create environments where patients feel empowered to engage in patient-led, shared decision making. There are multiple – as the endocrine therapy medications – there are multiple symptom management techniques and I want your listeners to be educated and empowered to negotiate with their clinicians. What treatments and techniques make sense for them given their diagnosis, the progression of their disease, and their lifestyle?

If you’re an avid salsa dancer, maybe you don’t want an AET that gives lots of joint pain as a symptom. Talk to your clinician about perhaps having conversations about if switching is appropriate. So, once again I want to make very plain that this is not a switch that patients should do independent of their clinician. This is why this conversation about the patient-clinician relationship is so important. Is that during survivorship patients need to be empowered to discuss and negotiate and share power with their clinician for their ultimate better health outcomes. 

Jamie DePolo: Yes. Absolutely. I completely agree with you. Now I’m wondering… this was kind of a small study,  included women from one cancer center, but it does suggest, to me anyway, that this could be an issue for many women. So, I know from these results we can’t extrapolate them to the entire population, but in your experience, given your other research, how large of a problem do you think this is?  

Dr. Janeane Anderson: I am so very grateful to have been part of an organization called the International Society for the Study of Women’s Sexual Healt,h or ISSWSH. I’ve been a part of this organization for now five years, on the board of directors for three. And so, to answer your question, Jamie, although this study is limited to one cancer center and one geographic location, the U.S. mid-South, which is Tennessee, Mississippi, and Arkansas, I am convinced that this issue, meaning unmet sexual health needs among women diagnosed with breast cancer, patient-clinician communication challenges among women with breast cancer – particularly those who identify as racial, ethnic, and sexual and gender minorities – is across the board. 

This is not just a mid-South or a Southern issue. This is a oncology and patient care issue. I have colleagues in every region of the country. There are colleagues in other countries who would suggest that this is an issue that comes from a known intervention, i.e. adjuvant endocrine therapy, which we know is really effective at reducing the risk of cancer recurrence and that ultimately improving patient’s outcomes, clinical outcomes, reducing mortality. In other words, AET is an effective method to keep our listeners here longer. We know that, but we also know that these interventions, this pharmacological intervention, causes adverse symptoms, not just sexual, but you know joint pain, vasomotor, hot flashes. 

Your listeners know the swath of symptoms. I’m focusing on the sexual symptoms because they seem to be the symptoms that are sometimes most bothersome to some patients but least likely to be addressed in the clinic setting. And so, that combination, particularly as my study shows for Black women, is a driver of medication non-adherence. And Black women are already a group that is least likely to initiate AET when given the prescription. They’re least likely to start AET and they’re least likely to maintain it, continuing it through the five and 10 years you talked about. And that means, beyond just statistics, is that people’s mothers and aunties and cousins and sisters and coworkers are at greater risk for not being here. 

And so, my study is showing that if these adverse sexual symptoms, which can be addressed, with shared decision making with a clinician, if they’re not addressed, then that is contributing to the medication non-adherence that is increasing Black women’s already greater burden for morbidity and mortality. I think this study, although limited to one geographic region, hopefully highlights and signals to other individuals. I encourage folks to contact me, join me. Let’s continue to explore this in other regions among other groups to see if these patterns of results hold true. I think they actually might, Jamie, because what I have been finding talking to women who have been willing to share their stories, is that they want to live. They want to take their medication. They want to be adherent but they oftentimes feel like breast cancer has taken so much from them and sometimes that adjuvant endocrine therapy pill is that last piece that keeps them from holding on to some sense of their selves and not.. 

And so, I hope that my study results start to add a nuance to the conversation around AET, non-adherence, who is non-adherent and why, because I don’t want the conversation to continue that some groups just don’t take their medication as prescribed, for whatever reasons. Instead I’d like the conversation to now be more complex and that some women are making conscious decisions to forego adjuvant endocrine therapy adherence in order to maintain a sense of themselves, their sexuality, their womanhood, that’s important to them. And when clinicians are not aware, don’t address that, are not partnering with their patients to make sure that all needs are met, then what we’re seeing is the kind of persistent mortality and morbidity rates that I think those disparities should not persist. 

Jamie DePolo: I absolutely agree. I’m also wondering, you know, we talked about the advice you had for women if their doctor doesn’t bring it up, but it also seems to me, that based on your research, there’s a component of oncologist education here. And I know you’re not an oncologist, but I’m wondering if you know, like is this something that’s discussed in medical school? Are there continuing education courses for doctors to talk about this? How is that sort of side of the issue being addressed if at all, if you know? I realize it’s not your area of expertise. 

Dr. Janeane Anderson: I moonlight as an oncologist. Just joking.

There are clinical guidelines. ASCO, The American Society of Clinical Oncology and others have guidelines for oncologists that include discussions of sex and sexuality with patients. I do believe that clinicians are given guidelines to initiate these conversations. My hunch is that those guidelines must not be instructive enough for clinicians, given the diversity of patients that clinicians across our country see. So, for instance, if the ASCO guidelines mention “initiate conversations about AET symptoms and sexual health,” that may not be enough of a guidance for a clinician who is caring for Arab women, given sociocultural and religious norms around discussions of sex and sexuality, gender discordance.  

And so, that guideline might also fall kind of flat if an oncologist is much, much older than their patient who may have been diagnosed, as I’m seeing women diagnosed still in their reproductive years, trying to manage fertility and treatment.

We also know that there’s clinicians like everybody else in America, have biases around race, gender, sexual orientation, religion, class. All of those biases I think, Jamie, are what’s contributing to the communication challenges that we are seeing. So, I don’t want to say that clinicians just don’t know, and I also don’t think it’s fair to say that they haven’t been given some guidelines to initiate conversation.  

What I’m wondering, is that, are those guidelines sufficient to give proper instruction for clinicians who may have diverse patient populations that are very different from them? And do those guidelines help clinicians interrogate in a really kind of reflective, reflexive way, their own biases that may create communication challenges, so those clinicians feel comfortable engaging in conversations about a very sensitive topic with patient populations that they may not normally engage with outside of their clinic setting?

Jamie DePolo: Sure. And I also wonder, too, if time is a factor. Because when I talk to oncologists many say, I feel like I have less time to spend with my patients now. You know, there’s so and so is scheduled, and by the time we get through talking about current treatments, some side effects, there’s not the time to have that thoughtful, reflective conversation that could take another 15 or 20 minutes, too. I feel like everybody feels this time crunch that they have to get through. I don’t know if you feel it in your research, but I feel like everybody says, I have to do more in less time. So, I’m wondering if you see that as part of the issue as well?

 Dr. Janeane Anderson: Respectfully, I hear that. I hear that. Clinicians have complained about a lack of time for generations. And to be fair, our current healthcare system probably does not give adequate time for the kind of long-form conversations that patients and perhaps the clinicians themselves would like. However, I do have to be honest, Jamie. I have a bit of a pushback about this because you know who doesn’t say that my clinician didn’t talk about sexual health with me? Men with prostate cancer. They do not say that. They don’t say that, you know, my erectile functioning, my sexual health was never initiated by the clinician, and they perhaps had the same amount of time.  

So, I have some pushback about, is the issue of appropriate patient-centered communication about sexual health for women just about time? I’m not ready to sign up for that one because we would see the no gender difference as we do. Instead, what I think is, what we talked about earlier in this conversation, is we talked about cultural norms, about the appropriateness of sex and sexuality for women across their life course. We talked about clinician and patient discomfort. We’ve talked about, you know, cultural norms around the awkwardness of discussions of sex and sexuality. We haven’t even really talked about, you know, when we have an intersexual, minoritized patient. If this is a Black queer woman or this is a lesbian Latino woman who is bringing in her partner.

And so, I have some research that’s been published that talks about the communication challenges that may be even more exacerbated around sexual orientation disclosures and this discussion of sexual health for lesbian, bisexual, and queer women with breast cancer.  

So, I understand that clinicians always would like more time with their patients and I do not cross that off as just an excuse. But I do say that given the time, these are topics that should be discussed. And, I talk about this and when I talk to clinicians, this concept of, like, talk equity and epistemic justice.

And I’ll break those down really quickly for your listeners. Talk equity is just what it sounds like. Is there an equal amount of talk time in the clinic setting? And there’s research that would suggest that clinicians actually do talk more than patients. So, the talk equity is imbalanced.  

And so, when clinicians say, I didn’t have enough time to learn all that I needed to learn, other communication scholars would say, that’s because the patient didn’t talk enough in that 15-minute session.

And the other topic of epistemic justice or injustice, what it really means, and I know your listeners, this will resonate with them, is the concept that oftentimes patients, women with breast cancer and other chronic conditions, are not believed. They’re not listened to. They’re not valued in their status as just a knower. We all create knowledge, Jamie. You’ve given a restaurant recommendation to somebody. Your research may have made Facebook or a blog post.  

We create as humans knowledge all the time and we are lauded and considered experts in our jobs and our different roles as mom and expert baker, but somehow when patients enter the clinic setting, that status, that authority over their knowledge, seems to go away, and instead we defer authority to the clinician. What that means is that over time, patients feel disempowered to engage in that kind of shared decision making, fact finding, truth seeking excavation called cancer. You need both people but if the patient doesn’t feel empowered, doesn’t feel like the clinician is really listening and valuing what she is saying, then over time patients stop participating within their full selves.  

And so, I think that is part of also what contributes to this idea about time and clinicians not feeling they’re getting all that they need within the time allotted, is we haven’t always recognized that the imbalances in talk equity, and that we often times have patients who over their life course have felt like their voice wasn’t going to be listened to in the clinic setting. And so, they may not be the best partners for the clinician. So that requires the clinician to ask more questions instead of making more assumptions. 

Jamie DePolo: Yes. That’s very interesting. I had not thought of it that way, but if you think about it, somebody who’s been diagnosed with breast cancer, they are an expert in how that disease is affecting them, and from my experience, limited, not as wide as yours, but everybody experiences it differently. You know, people have different side effects. People have different symptoms. They feel different.  

Some person taking an aromatase inhibitor is training for a marathon. Somebody else can’t get out of their chair because they have such bad joint pain. I really like that idea that everybody is an expert in their own situation. And you know I don’t know what the answer is. I know you said that that means the doctor has to ask more questions, but I just wish, you know, I could empower everyone to say yes, you are an expert. You need to speak up.  

Dr. Janeane Anderson: Absolutely. I know that’s easier said than done, right? Oftentimes, depending on people’s cultural backgrounds, issues of things like race and class, we can feel disempowered in the clinic setting. So, I understand why speak up seems to be a really simple cue to action that oftentimes is very difficult for people to speak up or advocate for what they think they want or need. I would encourage listeners, all listeners, but particularly as I’m a woman of color, I would encourage Black women and other women of color who are survivors, that a life post your diagnosis is as full and robust and beautiful as you dare to advocate for.

I understand there are always, you know, limitations, finances, money. I don’t want to be flippant and not acknowledge that some survivors are really facing some structural vulnerability. But when we talk about the clinic setting, when you’re in that clinic room, perhaps knee to knee to your oncologist, being able to ask the questions, get the information, that you need, to share your vulnerabilities, to ask for alternatives, to ask for clarification if you’re not sure. All of that is your right in that clinic setting. Don’t allow your clinician to be hurried. Don’t feel like they have a line of patients they need to get to, and so then moving on to other patients is more important. Your time is your time.  

And so, I would encourage listeners as they may be in various stages of survivorship that that clinic environment, that relationship with your oncologist, that environment, if it doesn’t feel like a safe space right now, I’m encouraging you to think about and reflect on what would make it a safe space, and ask your clinician to meet you in those places. Perhaps you need to have something as simple as an extra chair brought into the room because you have two support people instead of one. I think about the built environment. Sometimes a clinic space feels like I can only bring one person because it’s small. Ask for accommodations in whatever way you need. Like you get the information and the care that you deserve in the clinic space time that is your appointment. 

Jamie DePolo: Dr. Anderson, such good advice. Thank you so much for joining us today. I have learned a lot. It’s wonderful. 

Dr. Janeane Anderson: Thank you. Thank you. Thank you. I appreciate it, and to all of your listeners, continue to live well, and, Jamie, thank you for having me. 

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