Real Talk: Getting Sexy Back 

 From Susan G Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

This is Real Talk, a new podcast series where we’re going to break down the stigmas and feelings of embarrassment and talk openly and honestly about just how difficult breast cancer can be from diagnosis to treatment, to living with metastatic breast cancer to life after treatment ends. Today’s episode is part of a collaboration between Susan g Komen and Young Survival Coalition on Ways breast cancer treatment affects a woman’s connection to her body.

Depending on the treatment she needs, a woman can struggle physically with the way she looks and feels sexually due to hormonal and emotional changes. These are shared experiences across ages and races. Today I’m excited to welcome Dr. Kristen Rojas. Shanae Sison. And Kenitra good to talk about the intimate changes women experience from their breast cancer treatment and getting comfortable with a different version of themselves.

Dr. Rojas is a breast surgical oncologist and a national leader in treating sexual dysfunction in women receiving cancer treatment. She even identifies herself on Instagram as hashtag sex after Cancer expert. I love that. We’re honored to have you with us today, Dr. Rojas. And welcome Kenitra and Shenae.

Shenae was diagnosed with metastatic breast cancer last year at age 34. She became involved with Young Survival Coalition during her

search for a supportive group of women who could relate to what she was going through. And Kenitra, I know you’ve had trouble feeling feminine and sexy following your treatment and work hard at reconnecting with yourself, Dr.

Roas. I’m gonna. Ask you to start this conversation around getting sexy back by explaining some of the changes women experience during their treatment that causes sexual dysfunction and how they feel about being intimate. Thanks, Adam. Well, first of all, I’d like to thank everyone for being here, and thank you also to our guests today.

My name’s Kristen Rojas, as you said, and I’m a breast cancer surgeon. I run a program called Music. It stands for Menopause Your Genital Sexual Health and Intimacy Clinic. It’s a program at our cancer center here at University of Miami, Sylvester Comprehensive Cancer Center. That’s geared towards addressing the sexual side effects of treatment for women with a history of any type of cancer.

Most of the patients that we treat in the music program do have breast and gynecologic cancers, but we also treat women with other types of cancer or at increased risk of developing cancer. So I’m, I’ll start, um, with some of the, uh, most common symptoms that, uh, patients report in our program, which is like a one-on-one.

Super sub-specialized, uh, doctor visit. Uh, patients often report issues with dryness and painful sex with treatment. And then oftentimes I have found and will hear from my fabulous, uh, guests here that patients, um, kind of put a pause on their intimate lives during treatment. And then sometimes when they get back to, um, those aspects of their lives, they notice that there’s been a lot of changes and maybe we haven’t always been.

Doing a great job prepping them for those changes because there’s so much else going on. So I’d love to hear from you, Shenae and Kenitra about your experience in that sense. And then maybe we can offer, um, the audience some tips on how to address some of those issues. Hi everyone. My name is Kenitra. I was diagnosed with breast cancer stage three, her two positive, uh, er positive, um, in 2020 just as the pandemic was starting off.

Uh, so that was such a wild time, um, in my life. Completely life changing as you might, um, be familiar with. Um, For me, I, I definitely agree with you there because there are a lot of other things going on, and there’s this focus of let’s make sure, you know, we attack this cancer and you survive. We just wanna make sure you survive and that that is the focus.

And so you’re on that too. You’re not really thinking that, Hey, this is gonna affect other areas like, I have breast cancer, it’s gonna affect me here. But you, you’re kind of hit like a truck basically. Um, when you realize like, oh, it messed up things down there too. And, and you kind of feel in the end like you’re being punished.

Um, like, you know, I survived this. I beat, I beat this. And, and you’re looking forward to like living on and, and gaining some sort of normalcy of life and. Depending on, you know, if you have to continue hormone medication, hormone suppressant, suppression, medication, um, or not you, you don’t realize like, okay, this is still going to affect me going forward.

So I, I, I hope that out of this conversation that um, our, our providers, uh, take more time, not only yes to, to get rid of this cancer, to, to make sure we survive, but also. Focus more too on the quality of life and, um, intimacy and our sexual health following that time. Um, because it is just as important and it is, it can be incredibly debilitating, um, once you realize like, oh man, I finished chemo and all this other stuff, but I’m still not okay.

So. Thank you, Kenitra. I completely agree with you in that aspect of feeling like, um, you’re being punished or feeling as though you’re a little less than, you know. Um, mm-hmm. I received my diagnosis last August. Hasn’t quite been a year yet. Um, and everything comes at you so fast. Yes. Uh, you really don’t know which, which way to go, and your focus.

And I’m sure it’s the same for your, your oncologist and your doctors. Your focus is not really even on your sexual, um, health or even desires. It’s the last thing you even think about, uh, because you are literally in survival mode, right? Mm-hmm. Um, for me, I, everything came at me so fast. You know, I got a, my diagnosis, um, in August.

I. By October, I was starting chemo and then I had, um, a mastectomy in April, and then I had radiation, which I completed in June. Um, it was like a whirlwind of things. Fast paced, everything happening all at once, but in between it was, um, I found it hard, you know, to be intimate with my husband because, I mean, first off, I have one breast.

Now I’m self-conscious. I. A part of me, what makes me feminine is no longer there. Um, and I’m feeling just, you know, I ask my husband, you know, how do you feel? Are you feeling okay? And he says he’s fine, but you know, you still have that self-conscious feeling because you don’t feel whole. So I hope that this conversation, um, it’ll draw some in inspiration for women to feel more comfortable with having those conversations with their partners, with their, uh, doctors, with their oncologists, you know, and also if necessary, um, taking that step to, you know, maybe join therapy.

Because mentally there’s a lot going on that and some hurdles that we need to get over as well. Just making that conversation more comfortable and, and a normal conversation. So that stigma of that’s not something we talk about is no longer there. Thank you so much both of you for sharing. Shanae. Can you tell me a little bit about, did, how did you bring this up to your doctor?

If you ever brought. If you, when you were experiencing some of these symptoms, what was your experience when you let your oncologist or your surgeon know, Hey, this is what I’m feeling and how, how did they address that? I’d love to hear from both of your perspectives. Definitely. Um, well, for me, uh, it wasn’t something I thought about until, um, you know, I, my husband and I have been together for 12 years.

Um, we have two children together, so it wasn’t really something that I thought about until, um, I started chemo and I was given like this rigorous list of do not dos, and on that list was having to use a condom. During sex. And that is not something my husband and I had to do because I mean, we’ve been together for 12 years, we have two children.

You know, we’re, we’re in a trusting relationship. That’s not the norm for us. That’s a huge adjustment. And, um, it was not just because of the, the chemo, but it was also because I cannot get pregnant and I cannot use birth control. So, um, That is when kind of a bell went off in my mind, like, oh, what are, how are we going to navigate through this?

You know, this is gonna be a bit of a difficult task. So I, I asked my, my doctor, I said, you know, I’m a little uncomfortable only because I’m not even sure if this is the right setting or you’re the right person I should be talking to. Um, but. You know, sexually, I’m not quite sure how to navigate. I’m not even sure what questions to ask.

My oncologist thankfully, was, uh, very open, very understanding, and, um, she made the conversation very personable. Um, I think that’s one of the biggest things is being comfortable with your oncologist, being that, you know, even if that means to. Maybe not specifically your oncologist, but you can even reach out and say, Hey, is there a female oncologist that I can maybe speak with?

If that makes you feel a little more comfortable. Um, or also just saying, you know, having an appointment and bringing your partner along with you. I found that that was the comfort zone for me, bringing my husband along with me, having my husband talk, ask questions. I’m piggybacking off of those questions.

The doctor’s very. Open about the conversation. That is where I found my comfort. So even if you don’t have a partner to come along with you, a trusted family member, someone that you feel comfortable with, that you can lean on and even have a list of questions ready to go. You might not cover everything, but um, you will find that once you start to ask those questions as your doctor’s answering them, there’ll be more things that’ll spark your.

Attention and you’ll ask more questions and get more details through that. Mm-hmm. Um, I completely agree. Having that, uh, comfort zone with your doctor and going in with a list of questions, uh, for me it was more of like, you know, in chemo there’s certain periods where, certain days where you’re like, oh, I.

I want to be touched and I want to be loved. And I, you know, I want the affection of my husband. And so I was having one of those days and I was very thankful for that day, you know? Uh, but then when it came down to it, I realized that, oh no, I have, this is a lot of, this is painful. This is not gonna work.

And so I went into my doctor and I’m pretty open. I said, look. This is not gonna work for me. I’m a little more direct and, and I think it, it took my, uh, doctor kind of off guard. She was like, you know, many people don’t come in and talk as freely as you do about it. And, and that’s sad ’cause you should be able to.

But I straight up told her, I’m like, Hey, this is not working for me. It’s very dry. I did not see this being, A product of chemo at all. Not even a little bit, and like, like you said, shanae, when you’re sick, you’re not thinking about that anyway. But when you start to feel better, you’re like, okay. Maybe I could do this.

And so, um, she heard me out, which was really, really good. And, um, she was very supportive. And then she referred me to, um, a, uh, gynecologist and, um, that specializes in, you know, people who are experiencing, um, these side effects from.

That was a very pleasant experience. She sat down, she listened to me, and I, and I, I know it’s difficult, but in that moment, like it, it is very important to be vulnerable. So, you know, I, I encourage you to absolutely find your strength in any way you can. Um, and like you said, Shanae, whether that is bringing your partner along, And some women are too embarrassed to bring their partners along, um, even though they want that intimate time with their husband or, or wife or whatever.

Um, and or writing down your, your, uh, your questions beforehand and, and letting them read it out and then give you an answer could be, be, uh, an option for you. Um, and with my exam, we talked for a while. She got me comfortable. I laid down on the table for her to do an exam. She took a Q-tip, a Q-tip, and just, she could see the inflammation and just touch just the, and it, that was painful.

And that was, that was such a shock to me. And I was so like disappointed and discouraged because I’m like, so now even when I’m feeling good, I. You know, like, it just, I mean, incredible. So I, I just wish that, you know, along with these lifesaving measures, that there was more talk in, um, more comfort measures surrounding, you know, whether or not you’re having any, like vaginal dryness or discomfort or, Hey, this may happen, you know, during this time.

Um, medical office, they have a checklist, but it is, it doesn’t really go into depth, you know? So, um, the thought is nice, but we do need to have more conversations surrounding it. And I, I don’t know if you’re gonna bring this up, but I, I, I often wondered if, you know, males go through the same thing where their sexual health, um, or their libido.

I wonder if more attention is being paid to that aspect of their treatment. Um, because it’s certainly not for, for women, in my opinion. That is a good point that you brought up Kenitra, because I also feel as though if I did not bring up the conversation, it would not have been brought up at all. It is not something that is even, um, That was even on the list of things to discuss when my oncologist was going over things with me at all.

So I can definitely agree with you on that aspect. Thank you both so much for your perspective. It really is invaluable for myself and for other providers like me. One thing I often tell patients when I’m giving, um, patient facing talks is that, you know, You’re both appear, seem to me, my impression is very confident and, and and comfortable with these discussions, but many patients aren’t, especially patients from different, different backgrounds, you know?

Mm-hmm. Um, me being here in South Florida, I take care of a lot of Latino women. Mm-hmm. Um, when I was in New York, I took care of a lot of women who were very, very religious and so, I think everyone kind of has a different background when approaching these issues, and I just wanna encourage all of our listeners, like your oncologist, uh, surgical, medical, radiation oncologist.

We do wanna help you, but we also haven’t always been given the tools to address these issues. Not even only from letting you know that they’re gonna happen to mitigation strategies or tips for how to address them. Mm-hmm. And so one way that all of you can help us is even if you don’t feel comfortable, I love the idea of a list.

But bring it up. Say, Hey, this is happening. Mm-hmm. Do you have someone I can see? Do you have any resources for me? Maybe you can direct me to a website or someone else I can speak to. Because the more you bring it up, the more us as your provider. We’re gonna go home, look up your resources, and have those ready for the next patient.

Even if we look really awkward when you bring it up, it’s not you, it’s us. And so I really wanna empower. All of our listeners to bring up some of those issues. Um, even if it feels uncomfortable, because if five patients bring it up that day, then we’re definitely gonna go figure out strategies for you.

Absolutely, absolutely. And I think it’s more of a, you know, it’s a societal thing for, so, so much of the message that I think we receive is that women, we don’t think about sex. We are doing all these other things, and that’s just not a priority for us. And I, I just really want us to. Squash that because it’s not true.

And it is part of our, um, our daily lives and, and, and our quality of life. So, um, I agree riss this like, um, it’s very taboo. Um, but in this day and age, you know, we are modern women and we are, you know, focused on not only, um, Our health, but our happiness as well. And mm-hmm. It’s our right to be happy and to, it’s part of your femininity.

You know, you lo we’re already losing part of our femin femininity. Um, going through this whole cycle of events, um, sometimes having that connection, uh, with your partner, um, that physical touch will bring some life back into you. I. So it’s really important. Um, I want our listeners to, to know that they’re not alone and feeling that way.

You know, we all we’re feeling it too. You know, we’re right there with you. Oh, you’re not alone. Um, but yeah, I think another thing that would make the conversation a little bit easier on the patient, um, is. Making it a standard. You know, I know there’s so many things that we need to cover, but making it a standard to include your sex life as one of those things that we’re gonna cover.

So you don’t necessarily have to talk about it if you don’t want to talk about it, but put that out on the table as you know something. Hey, we do have these resources in case you need it. ’cause sometimes that is a little push. A lady might, might need to, you know, they gave me these resources, let me use them.

Um, they might be a little too shy to ask about them, but if they’re just given upfront, they, they’ll take that step hopefully to, to utilize them. Oh, absolutely. Absolutely. I, I agree with that and it, it kind of reminds me of, I work in the clinical field myself and it just kind of reminds me of, um, when we are starting to manage cases, it’s like your discharge planning starts on day one.

And so with this and what you’re saying, The planning for, even though we’re trying to survive. Again, this is, this is our goal, of course, but within that treatment plan, it should be, it should start at day one. Like, this is what you may expect and these are the resources, or these are the things that you can do to help combat that, this comfort or.

Um, whatever the situation is as it relates to your intimacy, um, I absolutely agree. It should be highlighted just as much as the, uh, doctor’s telling you this is, you have to do chemo for this set of time. You’re, you’re gonna get the double mastectomy or not, or, and the radiation, and this is what we’re gonna do for your vaginal health.

You know, it, it really should be laid out more clearly. Definitely. And you know, speaking about how the differences and how these issues are addressed between men and women, there actually is a very interesting study. Showing that men who have prostate cancer are told about potential changes in sexual function more than 50% of the time at the first visit.

And these decisions often play into, uh, what kind of treatment they choose. Hmm. And you know, for women, we, that’s definitely, I can confidently say that it’s not something that plays into the. Into what treatment we recommend and you know, especially for women who have estrogen receptor positive breast cancer who get put on estrogen blockers.

It’s essentially chemical castration and we’re not calling it that like, and it’s the same thing as the prostate cancer patients that get testosterone blockers, but for some reason it’s viewed in a completely different way. Without getting too political here on this, on this podcast, but let, I wanna kind of shift gears a little bit and talk a little bit about some maybe strategies for managing some of these issues for patients that do have them, that when they do show up, For our music, sexual Health After Cancer program, one of the first things we talk about with patients who often experience dryness, painful sex, but maybe also burning and stinging, is once you start to experience these symptoms, be really careful.

We talk about eliminating irritants and moisturizing. Most people have. Have heard of lubricants, but we try to talk about the other aspects that maybe patients haven’t heard of, and one is trying to limit the different products that touch the area that might have artificial fragrances. Or other irritating chemicals like there’s a lot of products in the grocery store that are geared towards that area that actually have a ton of chemicals that can really irritate patients, especially those on estrogen blocking medications.

And that includes fragrances in the detergent that they wash their underwear with bubble bath. Bath bombs, which are absolutely the worst offenders in in our program. And different soaps with artificial fragrance, even if they say it’s gentle enough for babies, it’s not always that way. And so the other thing we talk about is moisturizers for maintenance.

So like on days, patients don’t plan sexual activity just like they put under eye cream on. We also encourage them to use a non-hormonal moisturizer. There’s actually a lot of good products that are out today that are not your mother’s vaginal moisturizer. Like certain brands. There was really only one brand 10 years ago.

Now we have a lot of different brands and we tell patients to stick to a moisturizer with hyaluronic acid, and oftentimes we’ll utilize suppositories and have them do that two to three times a week. So do any of you have anything that’s helped for you in that sense that you wanna share with our listeners?

Yeah, I did, uh, try the suppositories and, um, what, and the Hy hyaluronic, uh, products. Um, and I, I tried a few of them, um, and they work, but I’m gonna give my honest opinion about it. It turns into another thing that you add to your daily routine and, and another reminder that. You have cancer and cancer comes in and it just is a tornado and it just alters everything.

And so, um, you do have to get into a routine. And I do think it is helpful, um, but I do want to make sure that you also know that it, it adds, it’s, it’s a process. It’s a process, and it, it is just, you know, just like you said, you’re moisturizing your face, you’re now moisturizing, um, your vagina and everything else that, you know, comes with it.

Um, but yeah, I, I used those. I also used, um, dilators. I, I wanna use the correct terms. Um, so yeah, dilators, I was given three different sizes and told, you know, this is what you do, you know, each day to help, uh, keep it, keep the elasticity, uh, in your vagina. And so I also use that. Yes, I also use that. Um, and that was helpful ’cause things weren’t so painful.

So it, it’s absolutely helpful. You just have to be consistent and really work it into your schedule. Thing I’d like to add to that, um, is, you know, for me, um, not, not only, um, Not only was it, you know, the sex wasn’t there, there were just chemo. It wreaks havoc on your body. Um, so there were times where, you know, I felt intimate, but I did not want to have sex.

So I think in those instances it’s really important, um, for you to have a partner that does. Is willing to show intimacy in other ways, you know, um, touching, hugging, kissing. Um, I, I got a lot of comfort and, you know, just my husband, you know, I’m making dinner and he, you know, hugs me, kisses me on the neck, you know, things like that.

Uh, kept. Kept that spark between the two of us kept me feeling wanted, kept me feeling, you know, feminine kept me feeling like, okay, as a woman I’m still desirable. And for me, those things are still important. Um, because once that time does come where we will have sex, it makes me feel a little bit closer.

It makes me feel like you do want me, you know, you, your sex life changes so much. You know how often when, you know, um, so it can start to feel a little debilitating on your confidence if, you know you and your partner are having sex three, four times a week and then nothing, you can start to feel like, well, it must be me.

You know, when in reality we do have to do a check in with our partners and say, Hey, are you feeling comfortable? You know, I’m not feeling very comfortable. Um, can you feel that I’m not feeling very comfortable? Is that making you uncomfortable? You know, things like that. Um, the conversation can be a little hard to have, but when we are intimate with someone in that way, it is very important to be vulnerable with them.

Absolutely. Yeah. Thank you so much for bringing up that important issue of communication, you know, as a surgeon and, um, also a gynecologist, I’m not the best person sometimes to counsel patients on, you know, the best communication strategies. And so oftentimes I’ll refer patients to a couple different places.

Number one is the A A S E C Which is the um, national Association for Sexual Therapists and Sexual Counselors, and you can actually search by your zip code on that website. For therapists in your area. And then another podcast that I have found very helpful is a podcast by, um, a woman named Dr.

Emily Morris, who’s sex with Emily. And one of the important, um, messages that I’ve gotten from that podcast for people who are experiencing these issues is to bring up these issues outside of the bedroom. Don’t bring ’em up in the moment because that’s oftentimes not the best time during game time per se.

And so, oh, you know, over a coffee, not in the bedroom any other time is a good time. And, um, to bring that up and communication really is key. So thanks for sharing some of those tips in that sense. So, uh, so ladies, I, this has been amazing, uh, such an important and great conversation. I really appreciate you sharing your experiences and helping us understand the ways that treatment impacts this part of your life.

Um, you know, sex and intimacy are topics that many people don’t feel comfortable talking about. So, uh, I, I wonder what would you say to listeners who may need some encouragement to talk to their doctor, um, or share their struggle with someone else? Um, for me, uh, I, and we talked about a little bit on some of the things that, um, you could do if you don’t feel comfortable, um, especially with this particular topic, writing it down, um, maybe even, um, recording a voice note or, or something that you wanna bring to your, to your doctor.

Um, in my mind, I just like, I knew when my appointment was. I’m like, all right, Kenitra, this is what you need to talk about. And so I just had a plan of what I needed to say and it made it a lot easier for me to just say it. Like I just went down my, my list and I was able to just like, This is what my problem is.

Please help me. This is a cry for help. Please help me. I think in the end, you really do just have to be direct. You do not have to suffer. You are not alone. This is very common. You do not have to be embarrassed. Uh, and I think that’s the biggest thing as women, when you sometimes feel embarrassed to talk about what’s going on down there, but no talk please.

I agree with you, Kenitra. Um, I think for, for me, uh, one of the, the things that were was hardest was because, you know, I’m a very proud woman and there are certain things that can make you feel very uncomfortable. But again, you know, a breast cancer diagnosis is a very vulnerable time in your life. It’s that time to take.

Control of that vulnerability. You don’t have control over much, but you do have control over, uh, the information that you’re receiving, the questions that you’re asking, and the resources that you are striving for. So in that sense, just be as open as possible and let your doctor know, Hey, I’m a little uncomfortable with this conversation, but I wanna have it.

Mm-hmm. If you have a good doctor, which I’m sure you will, they will do their best to make you comfortable and get you the resources that you need. So speak up. Yeah. One other tactic that I’ve liked, you know, from uh, as when I’m wearing my hat is a breast surgeon. I like when patients come in and they say, Hey, I looked this treatment up and I am have questions about it, and it’s something you didn’t bring up in our discussion.

And so they’ll actually print out like a medical journal paper and say, Hey, have you seen this? And I learned so much from my patients. Sometimes it’s not the right thing for that specific situation, but I still really, I feel like there’s been a real evolution in how. The, uh, access that patients have and also how they advocate for themselves.

So I hope that patients can apply those same tactics into this discussion as well. One other resource I have, um, for everyone who doesn’t have a sexual Health after cancer program in their, in their area, or, uh, an amazing gynecologist that specializes in these issues is the music program does have an Instagram.

It’s at music, sex after Cancer. And in that, um, Instagram, I, I post a lot of information for patients. I also write a lot of articles or give talks that are focused on educating providers. And so for any patients who feel empowered to do the same thing, but for the sexual health topics, you can find those resources and bring them to your doctor.

And you can even read, obviously, you can read them yourself, but they’re geared towards the provider perspective and say, Hey, you should really think about taking a look at this, and maybe it’ll help you address some other patients that are just like me because we’re constantly learning and growing.

Just like everyone else. Right. I forgot to mention there was another, um, another thing that helped me a lot was Facebook. Facebook groups. I’m like, anything dealing with, um, and not too many because they can really like, feed your anxiety. So I, I would definitely, uh, encourage you to just, you know, in moderation.

But there are, Groups on there that cater specifically to the type of cancer you may have been diagnosed with, um, and the type of sexual issues you might be, uh, faced with in the cancer. So if you are more, like, more along the conservative, conservative line, or it is just too embarrassing for you to take to the doctor, you can start there first and you know, take a look at what other people are going through.

Um, respond anonymously or ask a question anonymously and then take that to your doctor. Um, I know that that has been helpful for me at times and for other women. I’d also like to add one last thing. Um, I joined the Young Survivor Coalition looking for a group of women, uh, just for support and to be of support in any way that I could.

The um, young Survival Coalition is a great place. It’s, uh, geared towards women who were. Diagnosed with breast cancer under the age of 40, but all are welcome. Um, I encourage listeners to go to young, um, just for a sense of community. Um, there’s so many different resources and topics, not just about sex and intimacy, but fertility.

Um, A whole array of things. Um, whatever you’re looking for, there probably will have some type of resource or some type of a group or setting that, um, can give you some information and a sense of comfort and community with other women who are going through the same thing as you. Yeah. With that I’d, I’d also like to thank Komen and the Young Survival Coalition for, for bringing us all together, and thank you Shanae and Katri as well for being.

So, um, open and honest, and it’s really been a real pleasure for me to be able to speak to both of you and hear your, um, your perspective. So thank you. Thank you. Thank you. Yeah, same, same. You wrapped it up very well, Dr. Rojas. So, uh, thank you all so much for joining us today.

Thanks for listening to Real Pink, a weekly podcast by Susan g Koman. For more episodes, visit real And for more on breast cancer, visit Make sure to check out at Susan g Koman on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog