It’s OK To Ask: Breast Cancer and Breaking Taboos

Dr. Marisa Weiss: I want to thank you all for being with us today. I'm a doctor who takes care of people with breast cancer, and focus also on the important things that contribute to breast cancer and then also to contribute to your getting better afterwards. So lifestyle medicine, obesity medicine, plus a breast cancer survivor myself. I got that life-changing call 15 years ago after a routine mammogram, which is followed by a rough ride. All of you know what it's like, even though each one of our situations is unique to us.

And even with my medical training and years of helping patients find their voice, I experienced firsthand just how hard it is to speak up for what you need, especially when you're sitting on the exam table, you're cold, you're wearing a gown, those hospital gowns that is, feeling vulnerable, uncertain about what's coming next and unsure how much time you'll have with your doctor so you don't know how much you could actually ask in that time that you have together.

And the reality is that there are many reasons why people hold back asking questions, especially when it comes to issues that are so personal and private, like sexual health, body image, anxiety, mental health, managing long-term side effects, financial stress, and a lot more. So I want you to know it's okay to ask. In fact, it's important for you to ask.

So during this webinar, we will answer some of the questions you've wanted to ask your doctor but haven't. We'll also talk about how to advocate for yourself even in those moments when it feels difficult to push for answers or when you have limited time for discussion with your doctor. And sometimes that may mean making an extra appointment to get the answers you need. Sometimes getting answers to one question leads to other questions, so you want to get those answers too. You might decide to get a second opinion, or you might find someone who's more of a specialist in the area that you're seeking.

Today we want to give you the guidance you're looking for and help you feel more confident in navigating your care, whether you're newly diagnosed, in active treatment, whether you've finished your treatment, or you're navigating ongoing treatment for metastatic breast cancer.

So first I want to take a moment to acknowledge our general sponsor, Pfizer. Thank you so much for making this possible. We're fortunate to have three incredible speakers with us today. We have Jessica Kreitman, who is the manager of oncology social work at Mount Sinai Hospital, where she oversees oncology social work services across inpatient and outpatient settings with a focus on breast oncology. And with over a decade of experience in cancer care, she holds advanced training in palliative care and meaning-centered psychotherapy. Jessica is actively involved in program development, quality improvement initiatives, and interdisciplinary collaboration to enhance patient-centered care. She's passionate about survivorship support and is committed to improving access to services for individuals impacted by breast cancer.

Dr. Sameena Rahman is nationally recognized for her leadership in sexual and menopausal health. She's a board-certified OB/GYN and certified menopause practitioner with over a decade of experience in midlife care. She's the founder of the GYN and Sexual Medicine Collective in Chicago, a clinical assistant professor of OB/GYN at Northwestern Feinberg School of Medicine, Medical Director of Gynecology for Ms. Medicine and a medical contributor to Forbes Health. Dr. Rahman hosts the podcast, Gyno Girl, presents Sex, Drugs, and Hormones along with her YouTube series, Gyno Girl TV. You can follow her on Instagram. Her account is @gynogirl.

Dr. Eleanora Teplinsky is a board-certified medical oncologist specializing in breast and GYN oncology, gynecologic oncology. She's the head of breast and gynecological medical oncology at Valley Mount Sinai Comprehensive Cancer Care and a clinical assistant professor of medicine at the Icahn School of Medicine at Mount Sinai in New York. Dr. Teplinsky is passionate about oncology education and advocacy on social media. She's amazing that way. She's the host of the Interlude Podcast, where she shares the stories and experiences of those who've been affected by cancer. Her first book, Beyond the Pink, Navigating Life, Health, and Breast Cancer, will be published in September. We're lucky to have her as a frequent contributor here at breastcancer.org. You can also follow Dr. Teplinsky on her social media. Her account is @drteplinsky. Thank you all so much for being here.

As I mentioned earlier, I know what it's like to balance being a good patient with speaking up for yourself. You have to find your voice and use it. And before we move to the panel discussion, I want to take a moment to reflect on your experiences walking this line, why, at times, it's felt so hard to ask a doctor a question. On the registration form for this webinar, we actually asked you guys, have you ever wanted to ask your doctor a question but felt like you couldn't? More than half of the people answered yes. And hundreds of you who said yes share responses like, I felt rushed, I didn't think it was important, I felt intimidated. Overall, the most common themes were limited time during appointments and feeling embarrassed because a lot of questions feel like they're private, they're personal. You don't really know how the doctor's going to respond. You don't want to be judged and all that.

And that's exactly what we're here to talk about today, how to move past those barriers to get the answers you need so that you can get the best care possible with the goal to improve the quality of your life. Your most precious gift is your life.

And now it's my honor to welcome Jessica Kreitman, Dr. Sameena Rahman, and Dr. Eleanor Teplinsky. To start, what are you each seeing in your work with patients? What are the topics people need help with but hesitate to bring it up? Let's start. Let's say Jessica, why don't you go first?

Jessica Kreitman: Of course. I mean, I will say there's probably two main topics that I hear pretty often. One really being around body image and identity through cancer and through that cancer diagnosis, and how that really impacts how they relate to the world. I think, like you mentioned, Dr. Weiss, intimacy, how it impacts relationships. And that's sometimes challenging for them to bring up with their medical team because they don't know how. And I think the other main thing is really that financial toxicity that comes with a cancer diagnosis. Whether it's the treatments or being able to work, it just adds another layer of distress that we really work with.

Dr. Marisa Weiss: Absolutely. Women hold the burden of the world on their shoulders between home, work, community, and all the things you mentioned. And you're such a nice person that I'm sure people want to ask you questions that they wouldn't ask of some brusque doctor who's racing in and out, that you're maybe chose because that doctor's great at what they're doing but not so good at answering questions when it comes to on the intimate front.

Okay. Dr. Sameena Rahman, how would you respond to that question?

Dr. Sameena Rahman: Yeah, I mean, I think the majority of the patients that I see, number one is sexual pain. What can I do? Or this increased awareness of your vulva. Sometimes it's not just penetrative sex or painful sex. It's like I'm so much more aware of my vulva than I ever have been, and I can't wear pants, and I can only wear skirts, and I'm just uncomfortable. So really, any genital pelvic pain related to some of the treatments and the postmenopausal state. The libido is always a huge concern. Obviously, no one wants to have sex if it's going to be painful all the time. So we always say we have to fix that first, but the low libido, the not feeling like myself in general.

And then depending on where people are on their journey, there's always issues around the transition that's happening, whether or not they had abrupt surgical menopause or they were kind of transitioning in the normal perimenopausal front. All the mental health concerns, the irritation, the rage, not feeling like myself, the tearfulness, just all of the things at once. And like you said, it's like a collision. Right at midlife, right as these things are happening, you have to take care of parents, you have to take care of dogs, you have to take care of your career, you have to take care of your kids. And it's a lot.

Dr. Marisa Weiss: Everything.

Dr. Sameena Rahman: It's a lot.

Dr. Marisa Weiss: It's like a head-on collision, like you were saying. Yeah, it really hits you. I asked my primary care for a referral to a gynecologist because of course they keep retiring. And she said to me, "At your age, you don't really need to see a gynecologist anymore." So she was so dismissive and she never asked me, why am I asking that question? And so I'm like, uh-uh, this isn't good. So I realized that she's maybe not the person I want to be working with. But you can't just toss a doctor out just for one thing that may not be working. Maybe you give it another go and see if you can get further the next time around.

Dr. Teplinsky, tell us what you think are the major gaps here.

Dr. Eleonora Teplinsky: I mean, there are so many. I mean, I think it's a number of things and this is why webinars like this are so important to have these conversations. So from my perspective, as a medical oncologist, where we're covering all of the medical things about the treatment, the side effects, what's new, fear of recurrence, surveillance, that's all of that's happening. And at the same time, we're also trying to figure out, okay, what are the short and long-term impacts of all of these treatments?

And I will say women are really speaking up about this now, which is incredible. We're really talking about the impact of treatments on menopause, on sexual health, on brain health, on and on it goes. And what I find is that my patients really feel sometimes lost as to who to see. Their gynecologist maybe is not very comfortable in talking about hormones in someone who's had breast cancer. Maybe their primary care is, well, I'm not sure if you can have this. So there's almost this kind of bounce around a lot.

And so people feel stuck, and we're limited in time. We have very short visits. And so it becomes this perfect storm of how much can we cover in one visit? And it leaves people feeling like there's so much more to talk about, but there isn't the time to do that. So I think there's a lot, but it's really this balance of medicine, of the drugs, of the treatments, all the things that are happening in breast cancer, and things are happening at such rapid paces, but also how are we living well after a diagnosis? I think that's the key part that we are really all here to talk about.

Dr. Marisa Weiss: Right, absolutely. And the way you get the best care overall is to get the best out of each specialty. And it may be that the best information about medical oncology is going to come from someone like you, Dr. Teplinsky, because you're doing it every day. This is your world that you're always in conferences learning more, learning more. And then you might want to save your GYN questions for your gynecologist who may be more knowledgeable, more open, more easy to talk to about the fact that you lost your desire or it hurts and you don't want anybody touching you.

I was just at a conference where one person in the conference said to another patient, "You got to keep having sex with your husband. You keep having sex, keep having sex. Don't let that slide." And it's like, that's interesting advice. Of course, she would like to if she could, but she may not be able to. And so that's where you got to speak up and ask the questions. The best doc to ask is the doc who's got expertise in that area. And as you say, Dr. Teplinsky, people learn pretty quickly if they're going to get what they need from that doctor, because if the answer is totally off and dismissive or judgy, you're not going to want to ask again, you want to ask it to somebody else.

So these conversations happen in the context of relationships, even a relationship with your doctor. So you want to make sure that you're going to get the answers that you need. Dr. Rahman, are there cultural factors that make it difficult for some women to talk about their bodies even with doctors? And what's your message about how those women can speak up?

Dr. Sameena Rahman: Yeah, for sure. Sex we have to remember is biopsychosocial. Everything when it comes to either treatment or even how we engage in sexual activities and relationships and stuff has that biopsychosocial underpinning. So we know the biology, we know how testosterone hormones work, we know how neurotransmitters work for our sexual function. We know how depression and anxiety and all these things can inhibit sexual function and what medications can do. What a lot of people don't get addressed is the cultural things that they have learned over time that they have been indoctrinated in their lives when it comes to sex, whether or not they grew up in a sex positive or negative environment, whether or not their degree of religiosity sometimes is consistent, no matter what religion it is, with a more conservative sort of view on sex. And so all of these things can impact their ability to come forward about it.

Sometimes painful sex is normalized, sometimes all of these factors are normalized. And then you collide that with the culture of medicine, which has always dismissed these concerns. I always say that if your medical advice and treatment can be doled out by a bartender at last call, you're not receiving medical care, you're receiving bias. This is what happens. People get told to relax and have a glass of wine, and that's not the correct way to deal with any of these sexual concerns. And it's really profound how many women get told that over and over again. I hear it every day in my office.

And so I think because of the way that we, as even a medical community, silo ourselves into our subspecialties without considering the patient as a whole, I think the culture of our system is meant to fail women's health. I think that we're in a system where you get 10 minutes with your patient, so you got to go, you got to go, you got to get in and out. And then on top of that, the people who are growing up with their own cultural issues.

And so if your patient is not able to communicate, there are other ways to help. There are guides that you can use. You can get the right communication and the right language, and really finding a clinician that can really address those things without seeing you as just the person with the vulvar pain, like looking at you as a whole, who are you? How did you grow up? Tell me how sex was for you, that kind of stuff.

Dr. Marisa Weiss: And the cultural barriers cannot ... It may be the patients, it may be actually the doctor. The doctor may feel like I can't talk about that. Or it may be the culture of the person's partner if she or he has one.

Dr. Sameena Rahman: Exactly.

Dr. Marisa Weiss: Because a lot of times the advice that's given out assumes that you have a partner. A lot of people don't have a partner and they're trying to figure out, oh my goodness, I'm going on these apps. I'm going to meet this person. We've been going out a few times. Saturday night is coming up. I think this might be the big night. What do I need to be prepared for that?

I have a patient who had been, met with men 13 years prior and then had relationships with women over the last 10 years or so, and then was diagnosed with breast cancer. And then for whatever reason she decides, now I'm going to go back to men. I don't know why she decided, and she was like, "This Saturday night, it's going to happen." I'm like, "Whoa, whoa, whoa, whoa, whoa, whoa, whoa." Are you telling me that you have not had a sexual relationship with a man in the last 13 years, and you think it's just going to happen that magically? No, no, no. You got to meet with your gynecologist. You want to share what your plan is, make sure that that makes any sense. Get prepared for this so that it ends up being a fun time rather than an unfortunate incident."

Dr. Sameena Rahman: Of course. We have to treat that a little bit.

Dr. Marisa Weiss: There's a lot you need to do to prepare for that. Even if you are in a relationship, I'm sure you get into it with people that, how do you prepare for this? And there are the habits that people have. They get into bed, they roll over, a kiss and then mission style, one, two, three, done. That, it could be a default setting that you have in your relationship that you have to change up even if it's been there for years. That also requires using your voice, asking questions, speaking up in a way that you never did before, you never had to before or you never wanted to, or you don't know how to. And it's not like you get any education about how to talk about private personal sensitive matters. And when you try to figure that all out while you're dealing with a diagnosis, that's a real challenge.

Dr. Sameena Rahman: Absolutely.

Dr. Marisa Weiss: Now, Dr. Teplinsky, if you are in a situation where you're not satisfied with your doctor, or you feel like you want to get more information, let's say you want a second opinion or you want to change a doctor, it can feel uncomfortable. So what are some of the good reasons to get another opinion or look for a new doctor, and what's your advice for communicating to the current and the new care team about your situation?

Dr. Eleonora Teplinsky: Yeah, I mean, I think this is hard. A lot of times, and I say this a lot, the person that you started with in your original care team doesn't necessarily have to be the person that you see maybe in the survivorship period or more in the long-term follow-up. And I think this is hard. People have a relationship with their original doctor, and I think second opinions are always a great idea. You should not feel upset or you shouldn't feel like you're offending the doctor if you get a second opinion because we truly want everyone to get the best care. Now, I think that's very pie in the sky and there are going to be people that maybe are offended by that, but it's not about them, it's about you.

And I tell my patients this all the time, no one is going to fight for your life as much as you are. No one is going to advocate for yourself as much as you are. So as uncomfortable as it may be, go for it, do it, find that second opinion. And when you go for the second opinion, be very clear about what you're there for. I am here to talk about this. And when you're calling to make that appointment, you can ask the team when you're scheduling, this person, will they have time to talk to me about what you want to talk about? Because I think if you're going for, let's say, conversation about survivorship and that person maybe is not the best person for survivorship, don't waste your time. So ask those questions in advance. And I think if you're comfortable, share with your doctor, but you don't have to. You don't have to do that if you're not comfortable or you just don't want to, but advocate for yourself.

And I recognize that not everyone is in a position where they can get a second opinion. That's just not always realistic. So what you can do in those situations, take what you've learned from information on webinars like this one or others, bring it to your doctor and say, can we go over what are the guidelines? What is the standard of care for my disease type or this? I would like to talk about this. What is the data? So push for the science, the evidence-based. If you're being told, no, you can't have something or no, this is not indicated, push a little bit and say, hey, can we talk? What is the research to suggest that? What do the guidelines say?

Dr. Marisa Weiss: Right. And it's always interesting when you talk to your doctor and you sense that they know something, they don't know something. Sometimes if they're really knowledgeable about it or they're excited to learn more about it or help you with it, they're going to be more engaged and they say, you know what? That's a great question. I might not have all the answers, but I'm going to check it out for you and I'm going to circle back to you and we'll talk about it some more. That's a good response.

But if you feel like you're asking a question and they don't know the answer and they're shutting you down because they're embarrassed that they don't know the answer or they just are dismissive, that's not really very good. But as Dr. Teplinsky said, you might be in a place where there are no other doctors to get an opinion from. In that case, flattery is good, like, oh, I'm so honored that you're my doctor and I can talk to you about these things. And I know I'm asking you something that most people, that may not share the same concern. Is there someone else I could talk to get my answers?

Should I make another appointment with you? Should I let you know ahead of time what my questions are? And try to do what you can to prepare for that visit. But I know that it's great to have Dr. Rahman here and I know Dr. Teplinsky's also very capable of talking about the management of menopausal symptoms in women who've had breast cancer, especially now where there's so much talk about the use of menopausal hormonal therapy. There are not that many people who have expertise and feel comfortable having that conversation. They think it's a risky conversation. They don't want to do anything that puts you at risk and they don't want to take the risk themselves. So they might be happy for you to go to somebody else and talk to them about those important questions.

So speaking of which, Dr. Rahman, a lot of people are struggling with sexual health, especially since breast cancer treatments can cause all kinds of menopausal-like symptoms, like vaginal, like the vulva, the outside, the lips outside the vagina, the front door as it were, the thinning, the dryness, the irritation. What are ways to alleviate this discomfort with and without the use of vaginal estrogens and other types of hormones that you might use in your practice? I know it's a big question.

Dr. Sameena Rahman: Yeah, no, I mean, this is what we refer to as genitourinary syndrome or menopause. We used to call it vaginal atrophy, and really back in the day because they called it ... it's the senile vagina, but this is a syndrome of genitourinary changes that we see because of some of the treatments for breast cancer, the AIs and the tamoxifens, but also menopause, but also people, the 20-year-olds that are on birth controls that have similar symptoms. There are people who are lactating with the same symptoms because the tissue is affected by these times of hormonal transitions and depletion. And so you have the opening of the vagina where you're referring to, the vulvar vestibule ... Let me grab my vulvar puppet to show people

Dr. Marisa Weiss: And while you do that, you said AI, you mean the aromatase inhibitors, the medicines that stop the reduction?

Dr. Sameena Rahman: Yeah. Not the other AI.

Dr. Marisa Weiss: I'm just clarifying that. Okay. Let me hear your vulva there.

Dr. Sameena Rahman: This is my vulva here. This is your labia majora, your labia minora, your clitoral hood and clitoris. So this clitoris can shrink down. The clitoral hood can become really stuck on the clitoral glands. It can shrink down to half its size. You can get, this labia minora can start disappearing where you just have the majora and not this protective layer. And then the vulvar vestibule, the inner layer that you have to cross through to enter the vagina, it goes up to where you pee from the urethra down to the perineum. That vulvar vestibule is both androgen and estrogen dependent.

And so for so many women, they'll try different things. Obviously, vulvar vaginal moisturizers like hyaluronic acid-based moisturizers used to always be considered first line with lubricants. I think we can all say with some certainty that patients that are breast cancer survivors can be on local vaginal hormones, the majority of them in a very safe way. These are dose dependent hormones that really are supposed to be limited to the skin.

I love vaginal DHEA. Vaginal DHEA converts into estrogen and testosterone in the vagina. It gets you that treatment at the opening because it dribbles into the vulvar vestibule that is so androgen-dependent. It needs testosterone to keep healthy. And so I think that is a great option. You have your vaginal rings that give you a local dose of estrogen. You also have vaginal creams. A lot of us will compound an estrogen testosterone cream that you can just simply apply to the vestibule. I sometimes have oncologists who still don't want to do the vaginal estrogen when I talk to them. I'm like, "What if I compound this percentage with this percentage and they just apply it to the vestibule, really low in the canal? It's not going up high." And so some of them will agree to that.

There are other therapies. There's a laser technology, the Mona Lisa Touch, which had been used for many years as the best option for breast cancer survivors before many of our guidelines have updated so that we can use local hormones. But it is a CO2-based fractionated CO2 laser that will laser the vulvar vestibule and also the vagina. Pelvic floor therapy, that physical therapy is such a critical piece of really healing the area and allowing for more pain-free sex and control of the urinary symptoms.

And remember, the urinary symptoms are a big part of this. We're not only controlling for the fact that you have vaginal dryness, vulvar discomfort and sexual pain, but that urinary component is urinary frequency, urgency, recurrent UTIs. And just think about the fact that 25% of the hospitalizations in the geriatric population are due to UTIs. 6% of people die from sepsis. And if we can reduce the risk of UTIs by giving a local vaginal estrogen therapy that does not increase your systemic levels, we can reduce UTIs by 50%. So it is life-saving. I think that's the other thing we have to consider.

It's not just about your pleasure and discomfort, but really potentially saving those hospitalizations. And so I think all of those things ... Pelvic floor therapy, remember when we clench up because we're in sexual pain, the muscles become shorter, they become more taught. They become difficult to strengthen. They don't elongate as well. So getting in there with some physical therapy, using some suppositories. I use Baclofen and [inaudible 00:27:37] in the vagina for some people with significant pelvic floor dysfunction that impedes their sex life. And then also we can use vaginal Botox for really severe cases.

So there's a lot that we can do to really improve your quality of your vulval vaginal health. But I think if most people can agree that the use of a local low dose hormone, estrogen or DHEA, is probably the gold standard. If we can get most people to agree to that, I think most people have the best success with that.

Dr. Marisa Weiss: Okay. And then these things also work in combination. So you might start with, as you were saying, like a moisturizer and lubricant like Uberlube, putting it on both hands, you, your partner, or if there's no partner, just you, whatever toys you have. And then maybe adding in low dose local hormonal therapies to the outside and maybe the inside, depending on your particular situation and where things are not working well.

And it's also good to try these things out on your own before you engage someone else, because as soon as a partner thinks they're going to have intercourse and they're raring to go, if it's a male, then there's a lot of the thrusting and all that, can be traumatic to tender delicate tissues that are not so happy right now. So it's good to experiment on your own. And when my mother was 83 and my father died and she wanted to continue her intimate life, she went on to the Toys and Babeland website and Good Vibrations, and had that UPS truck at her house every day. And as it turns out, this is what I've heard, and I'm also training for my menopausal therapy practitioner licensee thing, whatever it's called. Anyway, and one of the things that I found out is that the nerve endings down there that perceive vibration are very sturdy, and they can work well and respond well to some of these toys that you might get, and there are different types of toys that you can use. I

Dr. Sameena Rahman: Well, I always prescribe vibrators for my patients. I literally put it on a prescription.

Dr. Marisa Weiss: That's great.

Dr. Sameena Rahman: Here's what you should use. And then they feel like maybe it's a medical device they're using and it's de-stigmatizing it as a toy, and they feel a little bit better about that too sometimes.

Dr. Marisa Weiss: Right. And Toys in Babeland New York is one of those places that was founded by lesbians, and who know a little bit more about the female anatomy than a lot of males. And they're particularly good at counseling you and guiding you to which toy you might want to use outside, inside, outside and inside, whatever it is.

Dr. Sameena Rahman: Absolutely.

Dr. Marisa Weiss: And also just mixing it up because the vagina and just the outside, the inside, she's quite a gymnast. So if you get yourself in the mood and you find something that works for you, your vagina can get longer, thicker, wetter and a little bit more resilient and able to handle a sexual interaction better. But that would mean that you would have to have an orgasm first. So that might mix up your usual order of things, but it may make you more receptive, more comfortable and able to enjoy it.

Dr. Sameena Rahman: Absolutely.

Dr. Marisa Weiss: Yeah. Okay. So Dr. Rahman, audience members are also wondering about desire, like the whole libido thing. And you mentioned before, if it hurts, no one's going to want it. What do you recommend for no or low libido in people who've had breast cancer? Yeah.

Dr. Sameena Rahman: And it's a common problem. It's probably the most common sexual complaint. I think it's, first of all, very important to understand what a female sexual response is and it isn't. Very few people in long-term relationships look at their partner and want to jump their bones. It's not like visualize horny, you get it. No, it's really a matter of a ... Well, we have what's called a responsive desire, which means sometimes you have to get aroused before you get the desire to have sex. And so that's always something that when I talk to patients, and sometimes there's significant others when they're in the office, I'm like, "This is what you have to understand about a normal sexual response." They're very shocked, a lot of them. Especially a lot of the male partners are very shocked about it.

Also, just understanding the interplay of relationships and how you feel about that partner. Sometimes that changes as you get into these treatment situations, whether or not they were supportive. I mean, there's a reason that ... what are they doing for you in the home base? There's a reason that there's that meme you see that goes around with a man without his shirt on. He's holding a baby and doing dishes and they call that porn for women because we call that chore play. Chore play is like you're doing stuff around the house, you're helping out, you're doing the right things that make you feel a little bit closer to that person. So those little things you can do.

There are medications, obviously biopsychosocial. When we think about low desire, you've treated the pain, what do we do? I mean, testosterone, I think a lot of people could agree that the data is not ... We don't have great medical data that says that this is something that could not be done for breast cancer survivors. This is a possibility that we could use systemic testosterone, even though we don't have an FDA approved version. We would have to titrate an FDA-approved men's version to female dosing because if we stick to a premenopausal level, we can potentially, in 50 to 60% of women, improve their desire. So that's this conversation. It's a very nuanced conversation looking at what you have, what kind of cancers are involved, all the things.

There are two FDA-approved medications for low desire as well for women. One is called Addyi. It is a medication that works on your neurotransmitters in the brain to increase your dopamine and increase your norepinephrine over time. It takes a couple months to work and about 50 to 60% of women has a success. None of these medications are going to make you an nymphomaniac though. I got to make that clear because I have patients who are like, "Oh, I don't want to have sex all the time." I'm like, "That's not what this does." You might not reject your spouse eight out of 10 times. You might reject him five out of 10 times because you're more into it at that point." So you might get one or two sexually satisfying events, and that's perfectly amazing for most people.

There's also an autoinjector you can use called Vyleesi. That means it's on demand. It is an injectable that you can use 45 minutes before intended intercourse. It increases your dopamine for a short period of time, and for about 50 to 60% of women, it helps them. And that's the on demand date night drug. And then there's a newer medication coming out in June. It's called DARE to PLAY by Dare pharmaceuticals, and it is a topical sildenafil, which is Viagra essentially. It's a topical sildenafil. You rub it on your labia minora, you rub it on your clitoris 10 minutes before it is the expected intercourse. And what is arousal? It's just engorgement of tissue. So then you allow for that sudden engorgement of your tissue, and then all of a sudden your desire might come back too. And then you can have, hopefully, an enjoyable sexual activity.

So we have medications. There's sex therapy. That's so very important as well. And so all of these work together to help work on the relationships, all the things. But I think it's just really important to remember that it is a very common sexual complaint, the low libido. If your libido's low and your partner's libido is low, then it's not a problem usually. It's only usually when there's a mismatch or you wish your libido was higher. And that distress piece is a very important part of the diagnosis. But there are tools available. There are tools available and there are things that can be done, and working with a team of people is very helpful.

Dr. Marisa Weiss: Wow. Lucky for people who have you as their doctor. And by engorgement, you mean more blood flow to the area?

Dr. Sameena Rahman: Right. Because the sildenafil opens up the vessels, and then it just-

Dr. Marisa Weiss: Also, as you move your way through life and you have kids or jobs and all kinds of things pulling you in different directions, people get tired, and sleeping may be a higher priority than sex.

Dr. Sameena Rahman: A hundred percent. Yeah.

Dr. Marisa Weiss: So you might change it up and have sex earlier in the day, and also no alcohol because that can mess up your sexual arousal and your ability to have an orgasm. Plus your partner might be taking forever and you might be like, oh my God, is this going to be going on?

Dr. Sameena Rahman: I'm done.

Dr. Marisa Weiss: Okay. So alcohol can mess it up. So maybe sometime earlier in the day, maybe first thing in the morning, if you want to. Forget it if you don't want to. Or cocktail hour, but before the cocktails. It doesn't have to be at night when you might be going to bed at different times, or you're exhausted and you just want to roll over and go to sleep and no one to bother you or nothing to poke you.

Okay. Jessica, a lot of people are dealing with, as you mentioned before, negative body image. And of course cancer can steal your breasts. You have to give them up to get to a healthier place. You may have lost your hair, you may have scars, areas that are uncomfortable. Of course, it's common to have weight gain through treatment, making maybe a weight issue even more of a problem. How can someone find support when they're grieving those changes and losses, and dealing with all the changes in their lives all at once?

Jessica Kreitman: Yeah. Thank you, Dr. Weiss. I will say women come to us with such grief surrounding those visible changes and even the ones that are part of their body that we don't see, like the fatigue that we've talked about. And it can be really challenging for them on how do they move forward from here. I remember having a young woman in one of our groups who was in the middle of dating when she got diagnosed, and before that she had named her breasts and they were almost like her best friends. And having gone through this diagnosis and now surgery, it was so challenging for her to grieve these friends that she's had. And so really, we talked about providing the permission to acknowledge the feelings, and instead of looking through judgment, looking through the compassionate lens. And that doesn't have to be positive. I think people feel like, okay, I have to go all the way to the positive.

No, it's just really being compassionate and figuring out slowly reconnecting to your body potentially in a different way. She ended up having a memorial service for her own breasts, and that helped her kind of grieve that part of her body and rebuild from there. I think really finding the supports through this. Now that could be your family, your friends, that can be talk therapy, support groups. I really love peer support of every kind, whether that's forums on breastcancer.org or that's Cancer Hope Network and finding an individual peer that can really help you really talk through and normalize the feelings that you're going through. And then from there, thinking about how can you rebuild, again, that connection to your body. There are so many amazing organizations that are up and coming really to do things with yoga and ballet to help women really find that sense of their self again through movement.

Dr. Marisa Weiss: What about when the fear of recurrence just sort of pollutes your relationship? Someone looks at you or reaches for that area, it triggers this, or you're living in a toxic environment with your own fear and it's overwhelming. How do you help people with that?

Jessica Kreitman: Yeah, it's really hard. I will say, I think in those moments, modalities like cognitive behavioral therapy or even mindfulness and body scanning really help you kind of take a step back and look at your body in a different way and reframe some of those thoughts. Because when you get diagnosed, even when we have the most healthy of mental health, our coping strategies are really pushed to the limits. And so we really have to work with patients to rebuild new coping strategies or help reinforce the ones that they have. And it is certainly challenging when you don't have necessarily those supports and sometimes it's building that community. One thing I've really enjoyed watching is how much breast cancer patients come together as such an incredible community to support one another. I watched five women just today meet each other for the first time and ended up being best friends after only an hour of meeting each other. I think that connection and building that can be new friendships from that diagnosis.

Dr. Marisa Weiss: Wow, that's great. And Dr. Teplinsky, when you counsel your patients about survivorship plan, how do you help them manage their fear of recurrence?

Dr. Eleonora Teplinsky: I mean, I think that fear of recurrence is one of the biggest unmet needs. There's a lot there. And so I will say it's a couple of things. One is understanding that it's very common, trying to name that as a symptom, thinking about is it paralyzing? For some people, that fear of recurrence is truly paralyzing to the point where it consumes them. They're really struggling versus for other people, they say, "I'm nervous, I'm scared, but I have a plan and I'm not dwelling on it. " So understanding that it's going to look different in each person. I think that there's a lot of conversation about the use of technology like circulating tumor DNA in the surveillance period, which is evolving. And I think the conversation is going to look different in a few years than it does right now.

But coming back to, okay, so if there is a recurrence, what do we do? What is the plan? Knowing that there is going to be a plan, I do think for some people can help, but it's really nuanced and individualized. They don't have a great answer because it's something that we all struggle with. And then lastly, understanding your risk of recurrence, everyone's risk is a little bit different. And so if you feel comfortable, talk to your doctor. I don't like to talk specifically about statistics, but are you at low risk, medium risk, or high risk? For some people that can help frame the thought process and then saying, all right, if I'm at high risk, maybe I am going to utilize more surveillance technologies than if I'm at low risk. But it's really individualized, so don't be afraid to ask those questions and to speak up.

Dr. Marisa Weiss: What about the people who are taking ... two-thirds of breast cancers are hormone receptor positive. They like hormones and they usually grow in response to hormones. And then so one of the treatments is antiestrogen therapy, which is a big part of your practice, I'm sure. And for the people who are struggling with side effects, how do they talk to you about it, and what if they want to change the plan, go try another one or stop it just because the side effects are really getting in their way, their quality of life?

Dr. Eleonora Teplinsky: Yeah, I think this is an absolutely very common discussion. So there's a lot that we can do starting with understanding what the side effects are and they often feed into each other. So I actually will ask patients, what are the top three things bothering you right now? And often, let's say you're struggling with night sweats. Well, of course that's impacting your sleep. So now you're waking up exhausted. And now you've got joint pain, and now you're struggling with weight changes and it's a spiral. So there are things that we can do. We can use vaginal estrogen. We've got wonderful side effects, medications for hot flashes. We've got a lot of foundational lifestyle things that we can do.

For some patients, they make the decision to either, can we deescalate if you're on an aromatase inhibitor, can we go down to tamoxifen? What about the use of ovarian suppression? That may be right for some people but not for all. I saw some questions in the chat about SERD, selective estrogen receptor degraders, which are a novel type of endocrine therapy that we'll hopefully see in early stage breast cancer soon-ish. And they seem to be better tolerated maybe, maybe a little bit more effective. So there's a lot coming.

I have patients who've made the decision to stop endocrine therapy. I've had some patients who've made the decision to go on menopausal hormone therapy or HRT. And I think my goal is to support everyone in what they need, understanding it's shared decision-making. And really, what that means is sitting down together and saying, what are we prioritizing both in the short and in the long-term? And that looks different for each person and everyone has different worries. I had a patient today who said, "I'm really worried about cognitive health in the long run." Someone else may be worried about cardiovascular health because they have a risk for heart disease in their family. So we have to have those conversations.

Dr. Marisa Weiss: Absolutely. And what about people who are asking about the role of complementary therapy and supplements to boost their immune system or their mental health, their physical health? And patients might worry that you're going to judge them or be dismissive and not open to those types of questions. How do you handle that when people ask you that about those therapies?

Dr. Eleonora Teplinsky: So complementary and alternative medicines are always grouped together and I actually think they're very different. So complementary therapies, acupuncture therapy, massage, all amazing. Supplements, it's a huge industry. There are some supplements that can really be helpful for some people. Vitamin D, there's some growing data for creatine as a helpful supplement. That's going to look individual. But then there are supplements we always have to understand that they're not regulated, they're not studied with their interactions with the treatment that we're on.

I really like as a great resource, the Memorial Sloan Kettering About Herbs website. You could actually put in the supplement that you're interested in and it'll tell you what's known about it. I use that one all the time. And my take on it is if we don't have definitive evidence of harm, let's think about it. Is it going to help you? What's the data behind it? Can we try it? But it really needs to be a partnership. I would much rather know what my patients are taking than not taking because if there is an interaction or things develop, then we can address it.

Dr. Marisa Weiss: Yeah, absolutely. And when we say interaction, when you're basically taking various things, eating various things and taking various medications, they all have to get along in your body. And sometimes some of the same medications can all be broken down in the same part of the liver and you don't want to overwhelm the liver. So it's important for your doctor to know what you're doing and what you're not doing so that they can make sure that everything is going to be safe and that you're not going to get side effects from doubling up by taking too many things at the same time.

Dr. Rahman, do you have any advice for people to help them prepare for and make the most of their appointments with their doctors so that they can get as many of their questions answered?

Dr. Sameena Rahman: I think first and foremost, if it's a new person that you're dealing with, to even call ahead or email ahead. I often have patients email me like, this is what's happening to me. Is this something you feel comfortable treating? If yes, then you write down, okay, my top concerns. Especially in traditional models where you are working in a big system and you have to see patients every 15 to 20 minutes, you have to use them most of that time. And so sometimes that means you're going to try to get multiple visits, and sometimes that means you're going to go in there armed with all the information. Here's all the symptoms I'm having. These are the ones that are bothering me the most. For now, if we can address this, what's the best way for me to do it? And then if they had any other resources, if your clinician, doctor doesn't feel comfortable, try to find someone outside of that.

We have ISHWSH is an organization, www.isswsh.org, which is the International Society for the Study of Women's Sexual Health. We have clinicians that are actively always trying to learn the latest and greatest when it comes to dealing with your sexual health complaints. And so you can go there, and obviously the Menopause Society. I had written in one of the answers that if you're looking for someone who specifically might consider hormone therapy after breast cancer, our friend Dr. Karin Men has a growing list of clinicians who feel comfortable addressing this in a nuanced shared decision-making way.

It's not like every single person's going to say," I'm going to give you everything you want," but they're open to the discussion where it's not going to be a hard no. And so I think even looking at her resources are really good. But I think just arming yourself with your biggest complaints, understanding if the clinician or doctor that you have is there, and then having someone with you.

You have to advocate for yourself, but sometimes you get told a lot of stuff in a meeting that you don't remember. I mean, always ... You can write notes while you're talking to the person, but even having your significant other would be great if you could have them with you if you have one so that they understand everything you're going through as well.

Dr. Marisa Weiss: Right. Having a second set of ears and someone that can listen out. And also if it is your partner and you want to communicate something to your partner, you might let your doctor know ahead of time that this is where I want the conversation to focus. And if you could do the heavy lifting and I don't have to bring it all up, you can bring it up and make it normal, seem like a normal thing, that's a good thing.

Dr. Teplinsky, you were talking about you got to get those concerns, the fear of recurrence and all those things out there. But sometimes, as you know well, where every day in the clinic, a lot of people don't want to confront a challenge they're facing because it's too hard to deal with, like getting genetic testing or what is my risk of recurrence? And after I did all that medicine upfront, I had my surgery and there was a lot of cancer left behind, what does that mean? They're afraid to ask because they don't really want to know the answer. How does bringing a family member or a friend to the appointment, how do you help people deal with that resistance, that discomfort with asking a question where the answer might be difficult to hear?

Dr. Eleonora Teplinsky: So I think you have to be in that mindset to have that conversation, and that may not happen at every visit. And so understanding if you're not in that mindset to have those hard conversations, then that can wait until the later visit. And you can even send a message in the portal the day before, the morning of your visit and saying, this is what I want to talk about, or this is maybe what we can avoid talking about today, just to put that out there.

And I think the other part is to whoever your advocate is with you, talk to them in advance. So on the flip side, if there's a topic that you're nervous about bringing up, your patient, your person who's with you can say, hey, can I bring this up? So it works both ways, but I think you have to be ready to have those hard conversations, and that is not going to happen every single time, and that's okay.

Dr. Marisa Weiss: Right. And make sure that the friend you bring is the right one that's not going to be taking over and talking without listening, or taking over the whole situation. You want them to have a specific role. And like you said, you prepare for that visit. It's an important meeting for your future and you want to make sure that you each have your job description laid out.

Dr. Eleonora Teplinsky: Yeah. And I'll say that that person is sometimes who you would least expect. So a lot of times people will think it's going to be their spouse or a partner, and that may not be the right person in that situation and that's okay.

Dr. Marisa Weiss: Right, right. Okay. Thank you for that. Jessica, you mentioned before just about the cost of care, which can be so devastating. We call it financial toxicity. It's a side effect of treatment. And one audience member asked ahead of time ... She couldn't even return to work because the side effects were so significant. How do you counsel someone about managing the financial strain that you can experience when going through these treatments, which can be so expensive, and also get in the way of your ability to work and make the money you need to pay for them and get your benefits?

Jessica Kreitman: We hear this all the time. I mean, we've had patients come in and say, "How do I choose between paying for my medications and paying for groceries?" And it's a really big challenge. I usually try to encourage patients, don't wait till there's a crisis. If you know that there is something that's coming up, your inability to work or you have to reduce your hours, really reach out to your medical team so you can get connected to the right person in your cancer center or abroad. So you could have a social worker, there could be a navigator that can really help you through financial assistance programs, copay support, get you connected to both community resources and ones that are specific to cancer, and not for that, but also really work on are there legal components? Is your workplace not accommodating? Are there ways that we can help you navigate that or connect you to resources that can help you navigate workplace accommodations?

So really making sure that you know you're not alone in this and that there's going to be somebody walking you through and helping you navigate this really complicated situation.

Dr. Marisa Weiss: There are so many talented people on your team, I know. And in each of our hospitals, we've got these incredible people that connect people to resources. I know at breastcancer.org, we've had a lot of webinars about how you manage the financial strain, and there are organizations out there that have funds that can help fill in the gaps. And just don't be afraid, don't be ashamed. Ask, ask, ask, talk about it because you're not the only one. There are people there with answers.

So I want to thank our speakers so much for all the amazing information that you shared. Thank you so much, Dr. Rahman, Dr. Teplinsky, Jessica, for all your smart advice and strong encouragement. If there was one short thing that you want to make sure that people know who are attending today, what would that be? Dr. Rahman?

Dr. Sameena Rahman: Yeah, just be your best advocate. I mean, I think at the end of the day, no one's going to save you in any capacity. You have to advocate for yourself. You're going to get dismissed in these systems, and really just come in there armed and informed-

Dr. Marisa Weiss: Ready.

Dr. Sameena Rahman: ... and ready to ... and ready.

Dr. Marisa Weiss: Right. Be prepared. Absolutely. Dr. Teplinsky?

Dr. Eleonora Teplinsky: I mean, I think Dr. Rahman kind of took what I was going to say, but I will pivot a little bit and say there's a lot of questions in the chat that we couldn't get to. And so I think that a lot of these, there's a lot that's happening after a cancer diagnosis. Take it one step at a time. We're not going to fix everything in one visit or overnight. So think about this as a long-term relationship that we nourish, that we talk about, that we continue. And so maybe one visit is you're talking about your heart, another visit you're talking about your bones. Make those extra visits as you need to and don't be afraid to say to your doctor, who else should I have on my team? Do I need an endocrinologist? Do I need a cardiologist? Build your team. And I know that it's hard and it's time-consuming and it's costly to do it, but think about how we can do that in a way that makes sense for you.

Dr. Marisa Weiss: Absolutely. Great advice. And Jessica?

Jessica Kreitman: Yeah, I want to just wrap that all up and say you're not alone, that we really want to be in it with you and you are going to have a team of a lot of different people, and we want to nourish that with you.

Dr. Marisa Weiss: Absolutely. Absolutely. And each of you do amazing work in your arena, and also through breastcancer.org. We're so grateful that you're here today and thank you so much for everything. We're so grateful. So as we move to the end of our program, I wanted just to let you know more about the resources that we have at breastcancer.org, where you can find free comprehensive resources on the platform breastcancer.org. We also have a social media platform which is @breastcancerorg to help make sense of breast cancer, what it means for you in your life. We'll send you links to articles, videos, and podcast episodes. Of course, you can explore much more anytime by going to breastcancer.org on your own.

All of the information we provide is guided by experts and it's all medically reviewed. We stick to the facts and to the evidence, and we give you information that it's backed up by science. And when there's no science, we still provide information that you need to make the best choices possible. We can also email you a link to join our community where you can connect with other people. As Jessica was saying, that you can learn a lot from each other, little practical things and get support. They'll understand more about what you're going through.

And before we end, I just want to say thank you again to our amazing breastcancer.org community for being here today, and to our breastcancer.org team that makes the website possible and these collaborations work. And I want to remind you, it's not just okay to ask. It's so important to ask, to find your voice and use it because, as our speakers have said, your life is your greatest gift and it really ends up being up to us to protect and cherish it. So even when an issue feels small, uncomfortable or hard to put in words, you don't need to apologize for needing help and you don't need to suffer in silence.

Your questions do matter, and you deserve to be heard and to receive clear answers. So although speaking up may not always feel easy, but it's a skill that you can build and one question at a time, and what you practice grows stronger. So it's one of those things that you can learn more over time how to do. And just know that the team at breastcancer.org is here to support you. We have amazing people on our team that are always scouring the literature for new answers to the questions that you have as medical advances come down the pike.

We want to thank you so much to each of you for joining us this evening. Take care, everyone.