Let's Talk About Sex and Breast Cancer: Desire, Comfort, and Body Image

Dr. Marisa Weiss: Hello, everyone. I'm Dr. Marisa Weiss. Thank you all for joining us to talk about sex and breast cancer. After a diagnosis, we go through so many changes, physically and emotionally, that can abruptly mess up our intimate lives, relationships, and affect our sense of self. It can seem obvious to talk with your doctor about things like nausea, fatigue, or discomfort, but sexual health is often not discussed, and it should be. Your quality of life matters.

Today, we're going to break down what you may be experiencing and why and some ideas that could help you. This information is not just for people who are sexually active. It's important for everybody, and yes, we will also talk about how to get your mojo back. Losing sexual desire is common, but can be unexpected, frustrating, and depressing. I mean, sexual health can be affected by vaginal dryness, irritation, pelvic floor weakness or strength, and more. You're not alone if you're feeling or not feeling this way. I also want to acknowledge that some people feel pressured to get back to their old selves in the bedroom and beyond.

There's no right or wrong way to be. If you want to prioritize other parts of your health or you don't view a low libido as something that needs to be fixed, then that may be your new normal. Before we welcome our featured speakers, I want to thank Pfizer for their long-term support of Breastcancer.org, including making today's event possible. We are honored to be joined by two phenomenal experts who are dedicated to understanding and improving sexual health after breast cancer.

Dr. Kristin Emilia Rojas is a Breast Surgical Oncologist and Board-Certified Gynecologic Surgeon with the University of Miami Health System. She is the founder of the MUSIC Program clinic, which stands for Menopause, Urogenital, Sexual Health and Intimacy. The program serves women experiencing sexual dysfunction after cancer treatment. Dr. Jennifer, Jenny Barsky Reese, is an Associate Professor for the Cancer Prevention and Control Program at Fox Chase Cancer Center. She is a behavioral scientist and psychologist. Her research focuses in on improving intimacy, relationships, and quality of life among those with cancer.

Thank you both for being here. Breast cancer can affect your sex life due to the disease itself and side effects from treatment. Exhaustion, loss of desire, pain, lower self-confidence, and shaky mental health are all part of the equation. Plus, our relationships change during and after going through treatment. I want to share this quote from my Breastcancer.org community member.

Mina says, "You know, this loss of libido thing is just unacceptable. I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically, I still like it. It's just not rocking my world, as they say, like it used to, and I miss that." And while there's no magical cure for sexual health problems, there are a variety of things to try. We'll talk about that in a few minutes. Knowing what to expect can help us manage adversity.

We asked everyone who registered for this webinar if their doctor talked with them about the potential sexual side effects of breast cancer or its treatment, and the results of this informal poll were kind of eye-opening. Seventy percent of people who responded said they weren't told what to expect. Eighteen percent had a conversation, but it wasn't very helpful. That means about 9 out of 10 people were unprepared for the sexual side effects that they experienced.

One reason your care team may not have brought it up is because they may be so laser focused on the treatment plan to eliminate the cancer, and it may not come up in your conversation, but if you're part of that 86%, we hope the conversation you'll hear today will empower you to go to your doctor or find a specialist and advocate for what you need to live your best life.

Now it's my pleasure to introduce Dr. Rojas. Welcome, and thank you so much for being here today. Dr. Rojas, let's jump right in with a topic many people here today are concerned about, vaginal dryness, which can really disrupt your intimate life.

Antiestrogen medicines, like tamoxifen, and aromatase inhibitors, chemotherapy, removal of the ovaries, or other breast cancer treatments can cause this very uncomfortable symptom. Plus, vaginal dryness can increase as we grow older, in parallel to all the treatment-related stuff. These changes can come on both quickly and slowly. Could you start by explaining what vaginal dryness feels like and why changes happen in our bodies when estrogen is low?

Dr. Kristin Emilia Rojas: Sure, and thank you so much for having me today, and sorry I didn't get to say hi earlier, but...so, vaginal dryness. So, I think it's really important to, first, talk about why patients feel these symptoms, because, as you alluded to earlier, we don't always do a great job preparing patients and explaining the why behind this. Dryness is actually part of a bigger syndrome called genitourinary syndrome of menopause, or GSM. So, it includes vaginal dryness, painful sex, recurrent bladder infections.

So, the tissues of the vulva, which is the outside, and the vagina, which is the internal part, are very sensitive to drops in estrogen. So, we know that aromatase inhibitors, like anastrozole, letrozole, and exemestane, significantly decrease the level of estrogen in someone's body, and what that does to these tissues is, along with tamoxifen or other selective estrogen receptor modulators, is it can actually make the tissue not only dry, but thinner and less elastic or less stretchy. It's the dryness and the loss of the elasticity that can lead to painful sexual activity.

Dr. Marisa Weiss: Right. I mean, it's really helpful to hear it from you. You're the expert.

Dr. Kristin Emilia Rojas: Definitely. Yeah.

Dr. Marisa Weiss: Now, what are some solutions? What's the difference between vaginal moisturizers and lubricants, and how should they be used, like, either in combination or in sequence? What do you recommend to your patients in the MUSIC Program?

Dr. Kristin Emilia Rojas: Definitely. Well, the majority of our patients that present to our program, this is their number one symptom. It's either dryness or painful sex, and we treat it the same. We start with four simple steps. Number one, we eliminate irritants. So, oftentimes, patients have put different products on the vulva and the vagina, and that can increase irritation or maybe even cause an allergic reaction. So, what we first do is take an inventory of everything that's touching the delicate tissues of the vulva and the vagina.

This means formaldehyde in toilet paper, fragrances in the detergent that you wash your underwear with, chlorine, et cetera. We also avoid things like vaginal soaps, especially...even if it's marketed as a vaginal cleanser, we don't want patients placing those types of products in or around the vagina. I always tell patients, the hair-bearing area, you can wash it like the rest of your body, but the part without hair really just needs water, and sometimes that's hard to kind of grasp.

But it's really important, when patients are feeling very irritated with stinging, burning, that we back off a lot of these things that could be potentially irritating. This also means that we need to check the ingredient list for every product that touches the vulva and the vagina, which brings me to my second step, step two, which is moisturize. So, just as you said, there is a difference between moisturization and lubrication. So, think of moisturizer is for maintenance. This is going to be something that you do on a regular basis.

So, like, you put your under eye cream on overnight every night, and then...as part of your regimen, and that's for maintenance, whereas lubricants, which is step three, you want to only use lubricants for sexual activity if something is going to be placed in the vagina, either sexual activity or a dilator. We have different types of moisturizers, which I know we're going to talk about. We have both non-hormonal options, which can actually be very effective when used appropriately, and we have hormonal options, which I know we're going to talk about today.

And then the last step...well, step three is lubricants, and we do want patients to use lubricants without gimmick. So, no warming sensation, no weird flavors or anything like that. Like, really basic. We like to recommend silicone-based lubricants for patients. We recommended, like, the brand Überlube a lot, because it's hypoallergenic. It doesn't have a lot of extra chemicals, but there's other products out there, and then, lastly, addressing the pelvic floor, which we're going to talk about, but can involve using dilators and pelvic floor physical therapy.

Dr. Marisa Weiss: Yeah, it makes it...I have had patients who are so worried that they have a smell or that it's going to, you know, turn off their lover, and they, like, scrub their vagina and that whole...and the vulva, the outside, as well, and they come in, like, red and swollen and miserable, crying, but really, you know, it just...a lot of water can be used. I mean, just, like, making sure you get in all the little crevices, because there's a lot of different places in there that you can just use warm water.

Dr. Kristin Emilia Rojas: Definitely. Yeah, and one of the other things I tell patients to help encourage them is that think of the vagina as a microbiome, a balance of good and bad bacteria. The good bacteria are lactobacilli, and all those products completely wipe out the lactobacilli in the vagina, and so, what we want to do is let the good bacteria that fight things like infection, odor, et cetera, make a nice environment for the good bacteria to be there.

Dr. Marisa Weiss: Okay, and how do you make it nice and comfy for that good bacteria and get rid of the other stuff?

Dr. Kristin Emilia Rojas: Yeah. Definitely by avoiding those intervaginal soaps, avoiding artificial fragrances, and like I said, checking the ingredient list for everything that touches the vulva and the vagina, but when we're talking about moisturizers, usually, our go-to to help increase moisturization and increase the lactobacilli is, number one, single-ingredient organic coconut oil, which is really good for patients who have a lot of irritation, burning, and stinging, but we also, oftentimes, recommend hyaluronic acid suppositories. There are several different brands out there. There's some brand-name ones. There's also some CVS brand hyaluronic acid suppositories, which are very affordable, and those can be placed 2 to 3 times a week and help promote...increase the moisturization, and so we can, backing off those other products, promote lactobacilli, decrease infections, decrease odor.

Dr. Marisa Weiss: Now, the word acid...hyaluronic acid, that word acid sounds a little scary to be putting that up there, but it really, between that and the coconut oil, sounds like a salad dressing. That's not what you mean, and you're saying that hyaluronic acid does help the vagina sort of like, you know...to make more moisture? Is that the idea?

Dr. Kristin Emilia Rojas: Yes. Hyaluronic acid is a molecule that pulls water from the atmosphere and holds it on the skin. So, it's something that really moisturizes and holds moisture on the mucosa, or the skin, of the vulva and the vagina.

Dr. Marisa Weiss: Okay, the inside lining and all that. So, we can...women can just go into the kitchen and use, like, an organic coconut oil that they get from, let's say, a Trader Joe's or Whole Foods or Amazon or you know, whatever, and what about olive oil?

Dr. Kristin Emilia Rojas: So, there are some studies looking at olive oil. We have less...we don't often recommend olive oil as first line, but some patients like it. We recommend coconut oil, because there's actually been studies showing that coconut oil is a natural antifungal, antimicrobial, and so, that's why that's our go-to. It's solid at room temperature. You just want to check the ingredient list, make sure it's the only ingredient and there's no added flavors, et cetera.

You want the one that's solid at room temperature. You rub it in your fingers until it becomes an oil, and then you're placing it on the external vulva, but if some product gets inside the vagina, that's totally okay. We tell patients to really place a lot on the vulva, and then go to sleep, and some of the product works its way up. So, olive oil's probably okay, but we just start with coconut oil because we have this other data.

Dr. Marisa Weiss: Right. Right, and when you put your fingers into the little vat of coconut oil, it is, like, this pasty thing, and you're thinking, like, what? How is this oil? But just as Dr. Rojas said, as soon as you start working with it, it kind of melts, and the vulva loves it, and the vagina loves it. You know, being slippery is a very good thing. Now, are there...you mentioned, like, there are ingredients in some moisturizers that we need to avoid, like the fragrances or any kind of, like, things that are trying to make it smell good and all that stuff. We just want the simple stuff, and that's why you just want the straight-up organic coconut oil, so there's only one thing in there, right?

Dr. Kristin Emilia Rojas: Exactly. Yeah. Go ahead.

Dr. Marisa Weiss: Yeah. For those patients who are...you know, have to use...are using contraception, like, they want to be sexually active, they're premenopausal, they can't get pregnant right now, they're using...their partners are using condoms. Can the condoms be used with these oils?

Dr. Kristin Emilia Rojas: Yes, great point. So, actually, if you're using coconut oil or any other oil as a vaginal moisturizer, those oils can degrade latex condoms. So, that's why we recommend, for those patients who are relying on condoms for either pregnancy or STD protection, that you use a moisturizer that's compatible. If you're not sure, you can always check the website of the moisturizer. There's usually, like, a fact section where you can check to say, okay, is this compatible with the type of condoms that my partner's using, which could be latex or non-latex?

Dr. Marisa Weiss: Is there are brand that you recommend so people can know what to look for?

Dr. Kristin Emilia Rojas: A brand of condoms?

Dr. Marisa Weiss: No, a brand of moisturizer or whatever that they can use with condoms safely.

Dr. Kristin Emilia Rojas: Yeah. So, hyaluronic acid suppositories, the Bonafide brand, can be used with condoms, but I always refer to the website to just double check, but you know, Replens is another brand, but it's not really my first line, because sometimes patients report that their symptoms don't really get better with that particular brand, but yeah, that's the brand we typically recommend for moisturizers, but also, the other thing is hormonal moisturization, which we sometimes...if patients have persistent symptoms after using a non-hormonal moisturizer several times a week for two months, is kind of our point that we reassess and say, okay, where are we at? If patients are still having symptoms, like pain with sexual activity, then we might add a hormonal moisturizer, and those are typically safe with condoms.

Dr. Marisa Weiss: Okay, and so is the lubricant Überlube, right? Like, they can use that with condoms, right?

Dr. Kristin Emilia Rojas: There's one type of condom that Überlube is not compatible with, and it's on the website. It's not...it's compatible with latex condoms, but not another kind. So, it is important to check that out and make sure that everything is compatible, but if you're not sure, you can also use a good water-based lubricant. We like the silicone-based lubricants because they last longer. You don't have to reapply them. Some water-based lubricants can be a little bit drying, but Good Clean Love has a good water-based lubricant that doesn't have a lot of irritants that's condom compatible.

Dr. Marisa Weiss: Okay, that's great to know. Now, is it able...is a person able to get the hyaluronic acid suppositories over the counter or do they need a prescription?

Dr. Kristin Emilia Rojas: Those are over the counter. We can order them through the Bonafide program. There are some other brands out there, but we also recently learned of a cheaper alternative at CVS.

Dr. Marisa Weiss: Okay. Okay. That's all good to know. So, let's talk about the big question, like the use of estrogen products in the vagina to help treat dryness. Are they safe, and what are the options, and how do you talk to your doctor about it?

Dr. Kristin Emilia Rojas: Yeah, let's clarify this, you know, once and for all. So, we always start with non-hormonal options, because we think that, when used correctly, most patients do get better with that, and then we can kind of avoid the anxiety surrounding the use of a hormonal vaginal product, but the really important thing to know is when we do recommend...when I do say, oh, I really think you would benefit from vaginal estrogen or another hormone called a vaginal androgen, the doses that we're using are much lower than the doses of the studies that show that they increase the level of estrogen in a woman's body.

It's 20% of the original dose. So, not only are we using doses that are a lot lower that can still make a huge impact, but we're also using less frequent dosing. So, all of the old studies showing that the increase in estrogen levels in women's bodies when they first started using vaginal estrogen used it every night, and what we do in MUSIC is we start a patient on a non-hormonal moisturizer, get the mucosa of the vulva and the vagina really healthy.

And then we add low-dose vaginal estrogen once a week and then increase it to twice a week. The likelihood that there's any increase in the estrogen in a woman's body after pre-treating with the non-hormonal moisturizer and with such infrequent dosing is too little, but even then, we have these...there's no evidence showing that vaginal estrogen...no reliable evidence showing that vaginal estrogen increases the risk of breast cancer recurrence.

There are some controversial studies out there that experts don't always agree with, but we do have a really good study that came out just this year, in the last few months, that was very well done that showed that breast cancer-specific mortality is not increased in patients who used vaginal hormones, and oftentimes, we only have to use vaginal hormones for a short period of time, as well, until we can get patients back to painless sexual activity.

Then they can back off, but then they always have that tool in their toolbox, and say, okay, if I start to have pain again with sexual activity, because maybe I'm not having sex for a long time...and we're talking about penetrative intercourse. Obviously, there's many types of sexual activity, but then we can have patients kind of restart for a little bit, use a dilator once...two to three times a week and kind of get...remodel the vagina to kind of increase the elasticity and back off...and decrease the pain with sex.

Dr. Marisa Weiss: Yeah. Yeah. I mean, I've had patients who were not sexually active at all for, like, 10 years, and then they went through breast cancer, and they're like, darn it, I am going to make this part of my life happen. I want to have fun on Saturday night and during the week, too, and I'm going to find myself someone out there, and I'm going to have sex again. So, they...and they're like, I'm going to go online, and I'm going to make this happen.

I'm like, whoa, whoa, whoa, whoa, whoa, whoa, whoa. That sounds like a great, ambitious hope and dream, and we...let's make it a reality, but we kind of need to back up a little bit, and we need to make sure, like...when was the last time you went to your gynecologist, and like, were they...what does your vagina look like? How is it behaving? Like, you know, is it okay? Is it ready to go, or do you need a little coaching, a little this, little that before you're ready to rock and roll? And so, you know, all these steps that you're describing and the MUSIC Program that you developed are all terrific and a great resource for people who want to learn more about this.

Dr. Kristin Emilia Rojas: Yeah, and definitely patients who have not had sexual activity for a while, who are hoping to jump back into things, not only moisturization is important, but I would recommend using a dilator on your own, without the pressure of having a partner there. Lots of silicone-based lubricant on a hard, plastic dilator, and work with a mirror. Place the dilator, hold it there for 10 minutes while you listen to a podcast or something like that. Just get used to having something there couple of times and week and so you can kind of gently stretch out the tissues before it's game time.

Dr. Marisa Weiss: Right. Good. Before game time, and we're not necessarily talking about the Super Bowl, but you know, some people like that, like to be sexually active during the Super Bowl. Whatever. What about dilators? You know, it's not like...where do people buy them, and what size should they get, and do they...you know, you want to explain if they come in a kit of various sizes and how it's definitely from, like, a vibrator or a dildo or something like that. Why don't you tell us about that?

Dr. Kristin Emilia Rojas: Well, honestly, we think of dilators as, like, sexual tools and devices, but it's not that different from things like a vibrator, but there's different types of vibrators. There's external and internal. You know, what's important is that we're mechanically dilating the vagina through some mechanism, and so, when we're thinking about using dilators, we usually want a pretty rigid, plastic dilator to help stretch the tissue.

We don't want it too squishy. There are some kits available, but...that kind of...where you can start with the smallest size and work your way up. Most important thing is that you're using a lot of lubricant before you place the dilator. What I oftentimes recommend for patients who have a lot of these changes is I refer them to a pelvic health physical therapist who can work with them with dilators, but sometimes these very wonderful practitioners have a lot...a waiting list.

And so, sometimes we'll work with patients, show them how to use the dilator, and actually, on our MUSIC Instagram @music_sexaftercancer, I have a how-to video for how to start with dilators, but we'll oftentimes, in the program, give patients their first dilator for them to work with. The patients can...these are available online, websites like Soul Source, et cetera, but remember, you don't want one that's too squishy. If you end up getting a product that also vibrates, that's fine, too, especially...

Dr. Marisa Weiss: Enjoy yourself.

Dr. Kristin Emilia Rojas: Yeah, and that's totally okay. Probably increases blood flow, helps the tissue stretch out. There are some products out there that have, like, magnets, things like that. Not sure how effective that is, but we do also encourage patients to explore the world of vibrators, not only from an internal perspective, stretching the vagina a little bit, but external stimulators that can help increase blood flow and be incorporated into foreplay or five-play, as I like to call it. After sexual activity, we want patients really focusing on that before moving into any penetration, and so, those can be really helpful tools in that journey.

Dr. Marisa Weiss: Right, and it's a really smart recommendation that you use these on your own first in the privacy of your bedroom or wherever you want to do it. It's up to you, but the idea is that you're in control, because when it comes to sexual activity, and if you're having sexual activity with a partner that has a penis or something that is going to go inside you and you're...with intercourse, for your vagina, it can be a really rough ride, because, you know, as they, you know, are coming to climax, they can really be going at it, and it could be traumatic to the vagina.

So, you want to make sure that your vagina is ready for that, and when the vagina gets happy and is ready and it gets sexually stimulated and engaged...you know, like, even through desire, you know, it can get...start getting happy. It gets longer, wider, wetter, and thicker, and those are all the changes that...the vagina is an amazing organ that can accomplish all those things, and sexual intercourse is much more not just comfortable.

And you know, we're not just aiming for comfort and pain-free, which is, obviously, a most important, immediate goal, but we also want you to enjoy it and have fun, and that can really mean mixing up what you're doing and having a different lineup of sexual activities than you used to, and it might mean, as Dr. Rojas has said, you might need to use sexual toys together, not just on your own, especially if you know what you like.

There are some pretty cool vibrators or toys out there that look like they're modern...midcentury modern, like, all the rage today that are...like, you have to sort of like look at it carefully to know what you do with it, but you know, there's no question that, you know, chemotherapy, some antiestrogen therapies, like, being thrown into menopause early with ovary removal or suppression, and other treatments can trigger this overnight, early menopause.

Or if you're postmenopausal and you've been on hormone replacement therapy and you stop that overnight, you can be...you know, find yourself in a rough place. It can come on suddenly. It can be hard to manage, and can you tell us something about menopausal symptoms and why they can be overwhelming for people under these circumstances where your body is changing really too quickly?

Dr. Kristin Emilia Rojas: Yeah. I would say that every patient is different. Some patients, these symptoms do come on really quickly, and for some, they're, like, more insidious, but with regards to symptoms that are not the genitourinary symptoms, like hot flashes, we do have non-hormonal ways to manage those for patients that...and oftentimes, those can keep patients up at night and really disrupt their quality of life. So, that's something that...and we also have a new FDA-approved medication for that, that's not hormonal. So, that's something we should definitely be talking to your providers about so that they can advise you on that.

Dr. Marisa Weiss: What's the name of that? You're saying a new treatment for hot flashes?

Dr. Kristin Emilia Rojas: Yes.

Dr. Marisa Weiss: And the name is? Names are?

Dr. Kristin Emilia Rojas: It begins with an F, and it's called an NK3 inhibitor. It's kind of a funny word. It has an F and a Z in it.

Dr. Marisa Weiss: Oh, it sounds like a fun word. Yeah, wait, and is this something that your...what kind of doctor would know about this? A gynecologist?

Dr. Kristin Emilia Rojas: Oncologist, primary care doctors, your gynecologist. You know, part of my job is to also help increase awareness about a lot of these issues and train other providers. So, I think that we're all moving in that direction.

Dr. Marisa Weiss: Right. I mean, it's hard to expect your doctors to be up on everything. So, that's exactly why it's best to come prepared from that meeting or provide an...you know, email your doctor with a little nugget that you...that includes a description of this new medicine that could help. Is this something that I should try? It just...and you send a link with the recent paper. We can provide that at Breastcancer.org when we publish the webinar.

Dr. Kristin Emilia Rojas: Yes. It's called fezolinetant, and along those same lines...

Dr. Marisa Weiss: Wow.

Dr. Kristin Emilia Rojas: Like, I do encourage patients to bring all of these issues up with their doctor. We do want to help. Not everyone has all the resources at first, but if your oncologist is asked five times that day about vaginal dryness and painful sex, they're going to go home, and they're going to put together resources for patients. So, even...you have nothing to lose. You've already been treated for cancer. Bring it up. Bring it up to everyone. We need, as a society, to be addressing these issues better, and the resources are out there.

Dr. Marisa Weiss: Yeah. Can you please say the name of that medicine again a little slower, because it sounds like a really, really long, complicated name?

Dr. Kristin Emilia Rojas: Fezolinetant.

Dr. Marisa Weiss: Sorry, you guys, about the names that we put on these products, but it's not up...it's not our thing. One thing that I...you know, I'm a 14-year breast cancer survivor. When I went to the gynecologist and I was sort of like, you know, grumbling about the impact of all this on my life, because I was on the antiestrogen therapy and all that, is a book...she said it's called She Comes First, and the book is about this big, but really, ladies, all you need to know is the name of the book.

She Comes First, because when she comes first, then the vagina gets longer, wider, thicker, wetter, because you've had an orgasm first, and it becomes much more receptive to having intercourse with someone else. So, the foreplay, or the five-play that Dr. Rojas is talking about, is really helpful, mixing it all up, and making that part of your new routine. It can be oral sex. It could be a vibrator or a dilator, or it could be, like, a really cool movie, and some...whatever it is that gets you in the mood and makes you more interested and gets you away from work and all the things that are weighing on everybody.

I mean, I take care of patients now...I've been taking care of patients for over 30 years, and at Breastcancer.org, you know, there are 12 million people that come to us, and I am just always amazed and fascinated by the fact that everyone that I take care of is dealing with so many different issues all at once, and when you are in the bedroom, that is one place where they can all start, you know, cascading away.

It's like, oh my god, did I let the dog out? Oh my god, the laundry needs to be changed. Oh, no, my son hasn't called me. Oh, no, I don't know if this guy is for real. Like, whatever. Like, boom, boom, boom, boom, boom, boom, boom, and all those things really get in the way of the mood. We'll be talking to Dr. Reese about that, as well.

Okay, so, how does someone know if they could be helped with pelvic floor physical therapy or using dilators to reduce pain during sex? And isn't it kind of like a whole new thing, the idea that you've got a physical therapist who specializes in, like, the vagina, and she's going to get, like, in there and move things around? Like, that's something that...you want to know what to expect before you go in for that. How do you know if you're the person who could benefit from that kind of procedure?

Dr. Kristin Emilia Rojas: Honestly, I think everyone should visit a pelvic floor physical therapist at some point in their life. All pregnant women, all postpartum women, especially women experiencing this dryness and any issues with painful sex. They can also help with issues like urinary incontinence, so leaking of urine with coughing and sneezing, overactive bladder, issues with bowel movements, chronic pelvic pain after accidents. Like, any...the pelvis, the bones, the muscles, the ligaments, it's like a bowl. Very complicated. Holds everything together.

If you've got these episodes of pain from sexual activity, it's starting this process of not only negative cycle and avoidance in your brain, but oftentimes, it causes spasm in other muscles in the pelvis, and what the pelvic floor physical therapist does is they work with you manually, and they can provide not only some instructions on how to use the dilators on your own, but also biofeedback, different tools that they have to help stretch out those muscles, exercises they can give you based on what your exam is like when they examine you. So, this seems very intense, but when patients get there, everyone benefits.

Dr. Marisa Weiss: Okay, that makes a lot of sense. What do you recommend if someone wants to reduce or stop treatment, like hormonal therapy, just because it's messing up their sex drive or other sexual issues?

Dr. Kristin Emilia Rojas: Yeah. I think that the thing that can probably mess up someone's sex drive the most is a recurrence, and so, it's really important that we manage your symptoms so that you can stick on the treatment, but also, instead of just stopping, talk to your doctor and say, hey, this medication's not working for me. You know, are there any others I can try? Because there's not just one. There's multiple medications that you can try.

Sometimes we give patients a little bit of a drug holiday, where they take a break from it and come back. That's a good time for us to really work on some of these symptoms, like dryness and pain, and so, I encourage patients not to just stop on their own. Talk to your provider, but also, one of the things that we really work on in MUSIC is making sure we're addressing all these issues so patients can stay on their treatment, because it's really important these drugs, a lot of times, to decrease your risk of recurrence.

Dr. Marisa Weiss: Absolutely. We received an audience question about two medicines for premenopausal women that are used to increase sexual desire. There's Vyleesi, if I'm saying it right. Is it Addyi? What is the...how do you pronounce that?

Dr. Kristin Emilia Rojas: Addy.

Dr. Marisa Weiss: Addy. Okay, and what should people with breast cancer know about these medicines?

Dr. Kristin Emilia Rojas: Sure. So, when we're talking about medications to increase desire, I think about them...put them in two categories. So, one thing I just wanted to say, with regards to devices and arousal is, like, if you feel like your brain is not connected to the vulva and vagina anymore and its sensitivity is decreased, there are things called arousal gels that you can actually place. One of them is Vella. It increases blood flow, and you place it, like, around the clitoris.

And this is something good to use before sexual activity or using a vibrator, which, by the way, they're not all these really intimidating shapes and sizes. You can have a smaller one that's called a bullet vibrator that's actually much less intimidating and for external stimulation. So, there are tools out there to increase arousal in the moment, along with some of the things you talked about, like movies, books, podcasts, like Dipsea and Quinn, and et cetera. Now, to increase spontaneous desire, first...this is really complicated.

So, we want patients to tackle all the other issues, like relationship issues, communication issues. We do want to treat pain, because we don't want to increase desire if sex is still painful, because, oftentimes, that's a barrier, but there are two FDA-approved medications out there that increase desire, and they're FDA approved for premenopausal women, but we know that they work in postmenopausal women, as well, and so, they didn't get a lot of press like Viagra did.

But the one that we use the most is called Addyi, or flibanserin. It's a once-a-day pill. You take it at night. It can sometimes make you a little sleepy when you first start it. We don't want you to drink more than two drinks and take your pill. I always tell patients, if you're going to have more than two alcoholic beverages that day, just skip your pill, just because it's going to make you really sleepy. Other benefits of this medication are that it also kind of suppresses your appetite and helps you sleep.

So, this medication, after taking it for two months, I would say more than half of the patients report that they have a significant increase in their spontaneous desire, but it's complicated. You want to make sure you're also tackling all these other aspects, like pain, pelvic floor dysfunction, relationship issues, and also your mental health, and making sure you're removing those barriers that are inhibiting you. Things like meditation and mindfulness can be really helpful to bring you back into your body.

The second medication is called Vyleesi, or bremelanotide. It's an injection that you give yourself right before sexual activity. It's effective, but nobody wants to inject themselves, and so, we have much less experience in prescribing this in the MUSIC Program, but some feedback from people that are using it is that it does work and does increase arousal in the moment. So, flibanserin, or Addyi, is the pill you take every day to increase spontaneous desire, whereas Vyleesi, or bremelanotide, is the injection you give yourself prior to sexual activity.

Dr. Marisa Weiss: Thank you. Thank you, and can exercise help with sexual health issues? Like, what's the role there?

Dr. Kristin Emilia Rojas: Definitely. It increases the natural androgens in your body, like testosterones, and increasing your lean muscle mass, and improves your body image, gets...it improves all those feel-good brain chemicals. Exercise, as long as you're cleared by your doctor and you don't have any limitations, is huge. I tell patients who are experiencing hot flashes, as well, that a little bit of exercise in the morning where you're breaking a sweat decreases your hot flashes for that day, but it also has all these other benefits, including decreasing your risk of breast cancer recurrence.

Dr. Marisa Weiss: Wow. That's so important. Here's an audience question. Is it safe to have sex while someone is in treatment? Like, for example, can traces of chemotherapy be in the vaginal fluids and irritate you and your partner?

Dr. Kristin Emilia Rojas: Yeah, that's a great question, and I polled all of my medical oncologists about this, and honestly, there's no evidence that there is a significant amount of these chemotherapy agents in vaginal fluids. In fact, the half-life, or how long the medication stays in your system, is pretty short. So, what we oftentimes tell patients, if they do want to engage in sexual activity, if you're really worried about it, use barrier contraception, like a condom, but after a few days, it should be safe to have penetrative intercourse, if your biggest concern is worrying about your partner being exposed to those medications.

The information out there is really variable. Like, there will be chemo nurses that tell patients that they can't even share a bathroom with someone when they're getting chemotherapy. There's a ton of misinformation out there. The other thing you want to keep in mind is that if you've gotten chronic neutropenia, meaning that your white blood cell count's really low and you really have been struggling with that through your treatment, it's probably not good to have a lot of sexual activity.

Like, probably penetrative intercourse is not the best way to have sex, and we know that there's a lot of different types of intimacy and types of sexual activity just because of a possible increased risk of infection, when those white blood cells are so low, but after speaking to my medical oncologists, we decided that a good, maybe, possible rule of thumb of 72 hours after your infusion, if you want to have sexual activity, it should be fine.

Dr. Marisa Weiss: Okay. Okay, and does that count for oral sex, too, in terms of, like, you know, having an irritation of the mouth or whatever?

Dr. Kristin Emilia Rojas: Yeah. I would say I think of the vagina and the mouth as very similar. They're both mucus membranes, and so, I would say the same thing applies.

Dr. Marisa Weiss: Okay, and just to...a question just for someone's who's been, again, sexually inactive for a long time, been through...you know, weathered the effects of breast cancer treatment, wants to get back into the swing of things, you know, can you just sort of...like, sort of a step-by-step, and the MUSIC Program that you referred to is your program for patients, which is amazing, but like, what are the, like, first four steps or so that people would...that you would encourage people to follow?

Dr. Kristin Emilia Rojas: To get back into sexual activity?

Dr. Marisa Weiss: Yeah, after being out of it...out of it for a long time and having...in the meantime, having gone through a lot of treatment.

Dr. Kristin Emilia Rojas: Yeah. I would say, first, treat the dryness and pain with those four steps we talked about, eliminating irritants, moisturize, lubrication, lubricants for anything entering the vagina, and then addressing the pelvic floor with dilators. Also, those would be the four steps for treating pain, but also addressing the other issues that go along with decreased desire and sexual dysfunction.

Like, your stressors, et cetera, starting an exercise regimen, working on your relationship, talking to your partner about these issues so that they're dialed into, okay, there is a medical reason why you're having these symptoms and why...that things might be challenging, and I just want to finish that by saying patients do get better. Like, with this...I always tell patients, it's like, homework. We do oftentimes say, like, this is going to take some attention three times a week. I want patients thinking about sex in some sort of capacity once a day.

So, whether that's, like, watching...reading an article about it, listening to a podcast, try to light that part of your brain up, and that's not even just the part of your brain dealing with sex, but I want patients to think about lighting up the pleasure centers of their brain. So, it doesn't even have to be sexual activity, but taking a long walk, exercising, doing the things that you love to do. Like, really try to dial into the things that make you feel good, and that can help start to kind of...I tell patients it's like a highway where the lights are out. The cars aren't going to go down the highway. So, you've got to work on consciously thinking about this more frequently so that the car is spontaneously going down the highway and the lights are on.

Dr. Marisa Weiss: That's a great metaphor. What about products that could actually cause harm, like vaginal lasers or vulval surgery, like, the cosmetic stuff? Like, what do you tell patients about that?

Dr. Kristin Emilia Rojas: Thank you so much for bringing that up. Vagina lasers are lasers that were never FDA approved to be used on the vagina. They are registered devices, and they have a lot of gentle-sounding names, like MonaLisa Touch, FemTouch, FEM Wave, but we've actually become a referral center for patients that are harmed by these treatments. So, women who have low levels of estrogen in their body, the vaginal mucosa isn't healing normally, and these lasers, which, traditionally, have been used on your normal skin for scars, they create microscopic injury so that the collagen can start healing, and it has this healing process.

For patients who've been treated for cancer, we've seen that the healing process is not normal, and oftentimes, patients will get these treatments, and they'll have chronic pain, scarring of the vagina, narrowing, shortening of the vagina. Sometimes the vagina can even scar shut, and once those things happen, they're much harder to treat. So, I do not recommend vaginal lasers for any patients, especially breast cancer patients, and that's, like, my warpath right now. We're working on a lot of awareness about that.

Dr. Marisa Weiss: Yeah. Thank you for that clarification. That's been my clinical experience, as well. Do you have specific sexual health advice for people living with metastatic breast cancer?

Dr. Kristin Emilia Rojas: Yeah. I think that metastatic breast cancer patients need to have the same issues addressed, just like everybody else. You know, I treat...as far as how we address their concerns in the MUSIC Program, we definitely want to listen to see if what...unique concerns they may have, but all of the same things apply. So, starting with non-hormonal moisturizers, eliminating irritants. We may add a hormonal moisturizer, and then addressing the pelvic floor.

Dr. Marisa Weiss: Wow, that's so helpful. Earlier, I mentioned the poll that we did with our audience today, people who registered, and 88% of people did not get any, or did not get adequate, information about sexual health from their oncologist, and how do you suggest people advocate for themselves, and where can they find a sexual health specialist?

Dr. Kristin Emilia Rojas: Yeah. So, like I said before, bring it up with every provider. Hey, I'm having pain with sexual activity since I started this medication. What resources do you have for me? You know, can I talk to the social worker? Usually, oncologists will have a nurse practitioner or an advanced practice provider working with them, who, oftentimes, can come back in and have these longer conversations and hear your concerns and come up with a plan for you.

So, bring it up with everyone, even if your oncologist looks a little awkward when you do it. We're working on improving access to this information, providing more resources for patients and providers, but you can also take matters into your own hands and look up different information that's vetted. So, Breastcancer.org, I know Jamie's been helping to put out a lot of really great information that we've been helping to write so patients have access to this.

But also, if you're looking for a sexual therapist or a sexual counselor, the AASECT.org, the American Association for Sex Education...Educators and Therapists, you can type in your zip code and find some providers in your area. Also, ask your providers if there are any sexual health-focused resources within your cancer center, and there's lots of webinars, like we've been doing today. I think they're increasing. More groups are making them.

So, find the information online, as well, but you always...I would say, just, when you're looking for information online, make sure it's a reputable source. So, a lot of our big organizations, like Breastcancer.org, bring in experts, but there is some misinformation out there. So, if something doesn't sound right or if someone's promoting a product or a device that looks like it's going to fix everything, that's usually not how it works, and so, be a little bit of a conscious consumer in that sense.

Dr. Marisa Weiss: That's great. Thank you so much, Dr. Rojas. You're amazing, and all of you out there, you can find Dr. Rojas on Instagram @music_sexaftercancer. Thank you.

Now I'd like to welcome Dr. Reese to join us. We are so appreciative for your being here with us today. A sexual health expert that I used to know, Dr. Barbara Rabinowitz, we used to say intimacy can be translated into 'into me, you will see.' It's a very heavy-duty topic. It's not like any of us get training on the hard stuff, like communicating about intimacy and sexuality, especially if there's a problem. So, it's great to tap into your expertise today, as well.

Dr. Jennifer Barsky Reese: Thank you so much for having me.

Dr. Marisa Weiss: Thank you for being with us. So, Dr. Reese, let's get back to the issue of decreased sex drive. It's the cause of so much frustration and heartache, and from a mental health lens, what are all the reasons that having breast cancer could lower sexual desire?

Dr. Jennifer Barsky Reese: Yes. Absolutely. So, first of all, I want to say that that was a fantastic discussion. I really enjoyed hearing the discussion that just happened. A lot of really good points were already raised about low sexual desire, and I think it's...just to emphasize, too, that even though the...so, I know we've broken up the webinar today by kind of, you know, medical or kind of physiological and the emotional side, and I think there's a lot to that.

And I really appreciate kind of devoting, you know, a good chunk of time to the emotional piece, but I also really want to emphasize that, as Dr. Rojas said, that addressing the pain and discomfort and other physical barriers is really the first thing that one should do, that a breast cancer survivor should do, before kind of even, you know, addressing all of these other things, too, because if sex hurts, it is not going to be something that you desire. So, that, I really...I do just want to kind of emphasize that that is, really, sort of number one.

You know, I think there are so many reasons that libido, sexual desire, interest can go down. Certainly, I've been really enjoying reading the comments and the questions, too. I see a lot about body changes in the questions that I've been looking at, and I think that, certainly, changes in body image and how you view yourself can be a big issue. I think one way to think about it, also, may be, you know, there may be things that kind of get you going, and then there may be things that put the brakes on, right?

So, we all have that experience of, you know, as you just described a minute ago, kind of being in bed in the middle of intimacy and having thoughts go through your mind about all the things that have to get done or how you don't like how your body looks now, and those sorts of things would put the brakes on your sexual desire and arousal, too, and maybe there are things that could kind of take the brake off and be able to step on the gas, and so, those may be things, like Dr. Rojas was mentioning, in terms of erotic materials or those kinds of things to sort of get things going.

I think, also, one thing that we can...one thing that we know is that if there is some enjoyable touching, caressing, things like that, that is more likely to stimulate desire, and so, sometimes you might even suggest a 10-minute rule, for instance. You know, try to kind of...you know, oftentimes, people start from a place of neutrality, meaning they could kind of, you know, move forward with a sexual encounter or maybe not, rather than, oh, yeah, you know, let's get this on right now.

Most of us, you know, may not feel like that all the time. It really may be more starting from a place of neutrality, and then, as things go, maybe it takes a few minutes, but you may kiss your partner. You may do things like that, and then you may notice, oh, now I'm actually a little more interested in what's happening. So, those are a couple reasons, but a couple things, too, that I wanted to mention, also. Many, many folks have concerns regarding depression or fatigue.

There may be other medications that people are on, as well, that can impact those things, and of course, depression is also associated with, you know, loss of sexual interest and desire. So, I think that it's worth kind of taking an inventory if you're experiencing low libido or low sexual desire. It's worth taking an inventory of physical issues that you're experiencing, pain during sex, other emotional challenges, like depression or fatigue, other types of bodily pain, as well, and then that may help you, also.

Dr. Marisa Weiss: Yeah, and also, it may not just be you. Like, you may have a partner who is going through their changes. Like, they're now on a blood pressure medicine or this and that. They can't get an erection, and they don't want to initiate because they're embarrassed about themselves, but it's got nothing to do with you, but you think it is, and then...so, how can couples support each other and communicate, and is there anything that is, like...you need to avoid saying it? Sort of like it can sink the whole thing and shut it down?

Dr. Jennifer Barsky Reese: Oh, gosh. Yeah, so, you know, lots of thoughts on that. I work with couples a lot around, you know, communication, and I guess, you know, there's so much to say about this. I think many couples have the experience of not communicating that much about sex while things are going well, and so, then once you encounter the challenges associated with breast cancer, the treatment, the fallout, the sexual side effects, it then becomes, oh, all of a sudden, now we have to talk about what we do and what I like and what I don't want now?

And so, I think that that's a real challenge, and I just want to say that, you know, it is real. It's not always that easy to talk about these things, and so, first of all, you know, it is important to talk about. I think sexual wants and needs, in many cases, may have changed through the course of the breast cancer journey, and so, to be able to express how things have changed in an honest and direct fashion, that's still respectful and not blaming of the partner. I think most caregivers are not sure what to do anymore. They may not be sure how to touch you anymore, what feels good.

We hear that all the time from partners, and so, I think that if you help bring them in and give them some more information about what you do like nowadays, that's really helpful and really important. So, I would say, too, that one thing I hear a lot is...you know, from couples, oftentimes, a survivor will make it very clear what they don't like, right? So, this doesn't work for me anymore, but we then hear from the partners, I have no idea what to do now, because I know she...you know, she doesn't want to kind of have intercourse, but I'm not sure how to touch her anymore.

So, I just want to emphasize, too, that it is really worth it to think about what might you like, and so, ways to encourage that kind of touching that you do want, and really just emphasize speaking from your own voice, using I statements, expressing that, as opposed to, of course, you know, sometimes using the yous or the always and nevers can come across as blaming. So, we generally want to kind of steer clear of those sorts of phrases when we can.

Dr. Marisa Weiss: Right. So, avoid blaming and sort of letting people know what you...your people or your person, whatever, what you like, and I noticed you used the word caregiver, and it is tricky when your lover becomes your caregiver, and that can kind of mess up sort of the whole psyche of your relationship, and we actually did get a question from a caregiver who identified him or herself as that...in the audience who asked how can I make my partner feel comfortable being nude again? Because, you know, the partner is sort of, like, too worried about, you know, scars and things like that, and the body changes.

Dr. Jennifer Barsky Reese: Yeah. It's certainly a tough one, and I think body image is...kind of accepting one's body is a big challenge. Many women certainly have this...it can often be a lifelong challenge for many individuals, of course, but especially, I think, women in this society. So, I think, you know, realizing that it may take a period of time to gain that self-acceptance again. The body has changed significantly.

I know there were a number of comments in the Q&A about double mastectomies and all of the ways that that can affect how you feel about yourself. I would say, too, that I guess when I read that question, I'm thinking...or when I hear that question, I'm thinking about kind of two aspects of being nude. I'm thinking, one, is being nude and having someone view the nudity, so seeing you and what your appearance looks like, and then I'm also thinking about being nude during sex and having parts of your body be touched during sexual activity, during intimacy.

And I guess those are maybe...those are related, certainly, because they have to do with comfort, with having a certain part of your body, your chest, kind of your reconstructed breasts or whatever, viewed and/or touched, right, and so, I think that what I would suggest is really to try to find ways that feel more comfortable and also ways that you don't...that the survivor doesn't necessarily feel distracted by their appearance during sex or intimacy. So, are there ways that...you know, if it takes lowering the lights to feel comfortable, by all means. It's a simple strategy.

There's no reason why the lights need to be on, you know, full force and the nudity needs to be on display if that hampers intimacy from proceeding, of course, right, and then if there are ways, you know, to further, you know, kind of feel comfortable in your own skin, it may be, you know, using a silky kind of material that enhances the touch, while still allowing for that feeling of closeness. So, it may be that the same level of nudity may or may not be possible moving forward, but you know, I think that there are ways to make sure that that touching and that part can still be a part of intimacy.

Dr. Marisa Weiss: Right. I mean, also, communication is so key, because you may assume that your partner doesn't find you attractive, and your partner may be assuming that you don't find them attractive because you're not responding to their overtures or you know, their...

Dr. Jennifer Barsky Reese: Yes.

Dr. Marisa Weiss: So, there's, like, there can really be a disconnect between the two. So, that's...you know, communication is so key. So, should everyone look for counseling individually or try a couples' therapist if they're in a relationship, and what if you're partner's sort of unwilling to join that, and in that case, is going to a therapist alone useful?

Dr. Jennifer Barsky Reese: I mean, I certainly think that counseling can be useful. I don't think it's always, you know, required. I think, you know, oftentimes, if there are things that...I mean, I think, as a psychologist, I would say if you're feeling that a certain issue is well managed, then it is kind of, you know...there may not be a strong need for counseling.

I think it's when you feel like you're struggling, you're not able to kind of manage these issues, or you need help with a certain skill that a counselor can help you with. So, for instance, with communication or if you and your partner are getting into arguments, you're having relationship distress, certainly, those would be reasons to try to bring your partner in. It's unfortunate, if you're having relationship types of concerns, to think your partner might not support you in that or might not be willing to join you in that.

But people have a lot of thoughts, a lot of connotations to therapy, to being in therapy, or whatever, that...you know, that can be a problem. I know that...you know, that may be a gender thing. It may not be, but I certainly don't...you know, I think that counseling can be very helpful, I would say, in general, for, as I said, issues that are more difficult to manage or also more longstanding issues that could be kind of compounded by the current experience.

So, for instance, if a woman has had kind of body image concerns for quite some time and then, you know, this...and then is now being confronted with even more significant body image concerns, that this may be a severe thing, that would be a great reason for counseling, and then, as I said, the relationship issues, certainly, would pull for a more couples' approach.

Dr. Marisa Weiss: Yeah. Yeah. Someone in the audience asked, "How can I cope with anxiety around sexual activity?"

Dr. Jennifer Barsky Reese: Yeah. I mean, so, you know, it's a great question. I guess I would, of course, want to know a little bit more about what's driving the anxiety, because, of course, if it's anxiety about the interaction being painful, then that would, obviously, encourage one to address the pain. Obviously, nobody's going to be looking forward to or be able to relax during painful sexual activity.

So, assuming it's not having...it's not anxiety because this is going to hurt and it's some other kind of anxiety, again, I'd still want to be thinking about what's driving that anxiety? Is it I'm anxious now to have my body seen? Are there ways that I can build more comfort for myself around having my body be touched again or be seen again? Those may be...there may be exercises that you can do, like the mirror exercise, where you're kind of...where you're looking at yourself in the mirror and sort of encouraging yourself to find something you like about your body.

You're encouraging that nonjudgmental stance around your body, you know? So, there may be different reasons why there is that anxiety around sexual activity, and I would...you know, I think that that way to address it may depend on sort of what you think is driving it.

Dr. Marisa Weiss: Yeah. What about for people who are, like, you know, fatigued? Like, they've got...you know, their fatigue is such a common side effect of treatment, and they need to sleep at night, and they have to...you know, how do you, like, balance, juggle, like, the need to sleep and be left alone to sleep and not be woken up?

Dr. Jennifer Barsky Reese: It is so true.

Dr. Marisa Weiss: But the pressure or the desire or the thought you should be sexually active, like, how do you juggle those two things and time them out?

Dr. Jennifer Barsky Reese: Yeah. I mean, you know, fatigue and tiredness is so...is such an issue, and it's not only an issue for breast cancer couples. You know, it can be an issue for many folks, for new parents, for lots of people that are struggling with sleep issues or fatigue. So, I guess, in general, as a behaviorally-trained psychologist, I would say, you know, what are the times in the day when you are least tired?

And can you rejigger, you know, restructure your day a little bit and change your expectations around when you're supposed to have intimacy? It doesn't have to be, and it may not be, possible for it to be at 10:30 at night anymore. It's just, you know, not going to be possible. So, Sunday mornings, you know, Saturday mornings, when you're not pressured to get out of bed, go to work, or whatever it is that you may do in the mornings, you can linger a little bit and you're not tired.

So, you know, and that would go, too...that would also speak to kind of if you're on a treatment, you're on chemo, and you feel more tired in the first few days, you know, kind of planning or scheduling to have these kinds of activities when you do have more energy, and if I can just speak to that point just a teensy bit, around the whole issue of spontaneity, because it's one of the things that comes up so much with the couples that I work with around being spontaneous, right? That there's this idea of if we have to plan sex, then it can't be fun, and you know, so, it comes up a lot.

And I think it's really important to think about, because, you know, this idea of planning for intimacy is one that gets a lot of flak, but I think that it's not one to knock, because planning for it, you know, if you kind of twist how you think about it, you can be anticipating it and be excited about it, as opposed to, oh, it's planned, and you know, now it's not going to be any fun.

Dr. Marisa Weiss: Right. Right. Right. Well, what if someone is sort of like...you know, you go through so many changes, and maybe you've lost your breasts, your hair is not there, you've got scars, or is it uncomfortable, and then your erogenous zones have been taken from you, and maybe you've got weight gain or wight loss, and there's discomfort, and like, what should people...someone do if they are overcome, they're really full of grief about these losses and the changes in how they look and feel? Like, so, you mentioned about look in the mirror, like, trying to make yourself find things about yourself that you like. It may also be that, you know, you could wear some sexy top and cover up...just so you're not distracted, as you say, about what you do look like or not, that you put something on that really does make you feel sexy, right?

Dr. Jennifer Barsky Reese: Yeah. Yeah. Exactly. I mean, I think that, you know, it's...part of it is a distraction thing. So, when you're being intimate with your partner, whether you're thinking about the laundry that needs to be taken out of the washer and put into the dryer or you're thinking about how your body looks or you're thinking about am I going to orgasm? Is this going to happen right now? Whether that...any of those is taking you out of the moment and is making it harder for you to enjoy what's going on. Now, of course, that's assuming that there's, you know, physical sensation there and everything like that, but certainly, those are distracting things that you try to minimize.

I mean, certainly, you know, I see a comment again in the Q&A about how this is, you know, a life-threatening diagnosis, and you know, just to say that it is important to recognize what you've been through in terms of all of the changes that you just mentioned, all the various ways that your body has been impacted, to kind of respect and recognize that, and realize that it is a journey to try to be kind to yourself. Your body's been through a lot, but it's gotten you where you are, and you know, to try to think creatively about how you can work with what you have to feel okay.

Dr. Marisa Weiss: Yeah, I mean, and for those people who have lost, you know, pleasure points and erogenous zones after treatment, do you have a method of, like, how you explore your body and try to find other places...

Dr. Jennifer Barsky Reese: Yeah. Yeah, for sure.

Dr. Marisa Weiss: That may be fun?

Dr. Jennifer Barsky Reese: Yeah. I mean, so, there is something called sensate focus. It's taken from sex therapy, and some of you may have seen Masters of Sex. So, it originated with Masters and Johnson, that were the pioneering sex therapists, and you know, it can be done by yourself or with your partner, where you are touching the body in a very non-pressurized, nonjudgmental, or non-goal-oriented way. It's really meant to explore, and I think that, certainly, if your partner would be up for it and would be interested in it, and you also feel that you haven't had, necessarily much touching with your partner, that's something you could definitely do, and you may discover some additional erogenous zones.

Dr. Marisa Weiss: Yeah. Okay, let's...okay, there are a lot of people who don't have partners that are...you know, who maybe they didn't have one to begin with. Maybe the partner left. Maybe you left the partner or whatever. Without the person that they really want to be with or share something intimate, and so, they're on the dating scene. So, let's say dating, during or after treatment, it's challenging anyway, especially if you have been through breast cancer, and dating is a real...you know, if the relationship is new, these are hard things to navigate. So, what would you tell someone who is nervous to bring up sex and cancer while they're dating? Like, when do you bring up that conversation, and how?

Dr. Jennifer Barsky Reese: Yeah. So, I agree. I think it certainly can be a challenge. I think, you know, it may be helpful to remember that everyone brings things into a new relationship, you know, whether it's a prior medical history, like a breast cancer diagnosis and the side effects, or it can be lots of other things, too. It can be other personal histories. People come with all kinds of behavioral, you know, challenges, family issues, medical...other medical history issues, and so, you know, I want to say that because, you know, you're not the only one who's bringing things into the relationship...and I think when you do feel comfortable enough with a person and you feel like there's a potential there, it is important to talk about, because I think it's probably better to find out early whether this person is high quality enough to stick around and see it through and see how things go, versus not.

Dr. Marisa Weiss: Right, and you might find that...and you meet someone who has had a lot of their own, a different type of loss, or you know, that it's something that you actually share, rather than something that you're ashamed to bring up.

Dr. Jennifer Barsky Reese: Yeah. I mean, thinking about the ways that this experience has made you stronger. You're coming into a relationship, you know, with that as opposed...and with, you know, all of these experiences, too. So, I think there's a lot of ways of looking at it.

Dr. Marisa Weiss: Yeah, and well, can you...how do you help someone who feels sort of like guilt or shame about the sexual health challenges they're facing? That they're not, you know, the cute, fun-loving, spontaneous, you know, sexual person maybe that they were and that things have changed. Like, how do you help people sort of feel...sort of not feel guilty or shameful about...shame about that issue?

Dr. Jennifer Barsky Reese: Yeah. Gosh, I mean, I unfortunately hear that, you know, pretty often, and it is a shame. No pun intended. Yeah, I mean, look, this is not something that you caused, right? This is not something...A, it's not something in your head, and B, it's not something that you caused. This just popped up on my other monitor. Being alive is sexy. Exactly. You know, there is no shame in what you've gone through and certainly no reason for guilt.

You have done an amazing job in getting to where you are, and I think there's a lot to be said for that. I think it can feel like this is my problem, and so it's, you know, I'm responsible for it, but keep in mind, it's the treatments that've done this. It's medically and physiologically, oftentimes, kind of, you know, based, and even if it's not, even if it's just emotional, it's still not in your head. It's a real thing that's happened that deserves and warrants attention and understanding.

Dr. Marisa Weiss: Absolutely. Thank you so much. Let me ask you just...I've got two more questions for you. You know, we have an audience question. If a lump was discovered during sex...like, you know, they...like, you're, you know, having a good time, and all of a sudden, your partner feels the problem and that's how you were diagnosed, how do you overcome the trauma of that moment? Because that wasn't...that was, like, you know, panic in the middle of, like, what was supposed to be a fun time.

Dr. Jennifer Barsky Reese: Yeah. Gosh. I know, and I mean, you know, not being a trauma expert, you know, I would still say that my understanding would be that, you know, there's a trauma there and that you may feel tempted to avoid the situation, and that happens with all kinds of anxieties, right? So, if we're anxious about flying in an airplane, we avoid flying on an airplane. It sounds really simple, but if we're anxious and if we have that trauma associated with what happened during intimacy, then it can be really...it can be tempting to avoid all instances of intimacy to avoid reliving it.

I mean, in general, exposing yourself gradually, over time, to that kind of experience, you know, can potentially be helpful. I think that may be situation in which counseling could be helpful, because you do have that trauma, and that's a strong word, and so, I think that when you have that feeling and it's preventing you from engaging in intimacy with your partner, then that would probably be something that would be worth discussing with a counselor, too.

Dr. Marisa Weiss: Yeah. Right, and as we close, I just want to ask you, like, you know, there's such a focus on intercourse, but there are a lot of other ways to experience intimacy. How do you encourage the people you take care of to find intimacy in other ways than, you know, just intercourse?

Dr. Jennifer Barsky Reese: Yes. Yes. Absolutely. It's been something I've thought about for a long time, and yeah, I mean, I think that the tendency, first of all, is to kind of expect that, you know, kissing and touching and caressing will lead to intercourse, and so, oftentimes, a couple will find that, you know, if intercourse is taken off the table because of limitations, you know, sexual problems, then that will also put a halt to the kissing, the touching, because, well, I don't want to start something I can't finish, and so, I think if you and your partner agree occasionally, like, hey, you know, I can't...I don't think intercourse is going to happen tonight.

Can we kiss and touch, you know? Can we...and if you're both clear, I think, on that expectation, that may free you to actually do some of the things that you might've thought of as foreplay, but you can enjoy them and experiment, as well. There are also lots of other ways to have orgasms other than through intercourse. So, there is oral, manual stimulation, using the vibrators, bringing a partner into vibrator use if you're both comfortable with that, but there are lots of ways that couples can enjoy both kind of physical intimacy and also sexual intimacy without intercourse.

Dr. Marisa Weiss: Yeah. Absolutely. Well, thank you so much, Dr. Reese, and I just have one more question, which is tell everyone how they can participate in a couples' study that you're leading.

Dr. Jennifer Barsky Reese: Yes. Yes. So, thank you so much for mentioning that. I am a psychologist, as I mentioned, at Fox Chase. I'm also a principal investigator of a couple research studies. One of them is for women with metastatic breast cancer who have some concerns about sex or intimacy, and it is a couples' study, so they do have to be in a partnered relationship.

We are offering either a four-session program, that includes communication skills and other types of training, to enhance intimacy and address sexual issues, or the other group will receive helpful written materials about the same topic, as well. So, all couples in the study do receive educational materials, and the link, I can put it in the chat. I think that, also, it may be being sent out to folks.

So, hopefully, it's okay that I just typed it into the chat there, but feel free to click on that. There's plenty of information. Our contact information is there. Even if you...there's no...you're not signing up for anything. If you email at all, you can find out more information, or if you give a phone call, there is screening that'll be done over the phone, and then we can find out more later on, but it's open to women across most of the states in the US.

Dr. Marisa Weiss: Wow. Well, thank you so much for doing research in this area that needs so much more information, because people are suffering, and they need solutions and a deeper understanding of what's going on and how they can make a difference, and thank you, thank you for all that you do.

Dr. Jennifer Barsky Reese: Thank you so much, and yeah, I mean, this study is unique because it is for women with metastatic breast cancer, and it's one of the first intervention studies addressing sexual health in that population, and it's also funded by the American Cancer Society.

Dr. Marisa Weiss: Well, great to know that. Thank you.

Well, before we go, I'd like to just recap some of the information we heard today about a few things, like, for example, loss of libido. Clearly, there are both physical and emotional reasons for a low sex drive, which you heard about. If you want to make a change, you can look into lubricants, vaginal moisturizers used regularly, exercising, trying different types of sex and various positions during sex. Talking with a friend or joining a support group can help.

We host free weekly support groups for our Breastcancer.org community, and we'd love to have you join us and add what you know, what you want to know more about. We'll send you a link to sign up with a recording of today's webinar, in addition. You might want to meet with a therapist or a doctor who specializes in sexual function. We have a list of resources on Breastcancer.org that we'll email to you.

You can ask your doctor about physical therapy, changing doses for your treatments, maybe changing the medicines that you're using from one to another, because one might get...you know, create side effects, and the other might...one might be better tolerated. You want to, you know, look at medicines and watch out for side effects like pain, gas, constipation, diarrhea, things that can really interfere with sexual function. When it comes to, like, vaginal moisture, in the Breastcancer.org community forums people have shared what works for them to boost vaginal moisture, some of the same solutions that Dr. Rojas has talked about.

You can see their recommendations and join the conversation at community.breastcancer.org, and just to be sure to talk with your doctor about what you're...about trying something before you do, especially anything with a hormonal product, hormonal ingredient to it. We do podcasts. You can find much more information about sexual health on Breastcancer.org, including podcasts episodes featuring a variety of experts. We just released a brand-new episode focusing on talking to a partner about sex after a breast cancer diagnosis.

And in closing, I just want to thank you again, Dr. Rojas and Dr. Reese, and to everyone, every one of you, for coming. No pun intended. We hope to find...that you found that today's program was helpful to you and that you find the help that you need to improve your quality of life, strengthen your relationships, and regain some of the self-confidence that you may have lost through this whole journey. Thank you so much, and take care.