Sexuality and Breast Cancer: From Diagnosis to Survivorship

Jamie DePolo: Hello everyone. Welcome to this edition of the Breastcancer.org podcast. My name is Jamie DePolo. I’m the senior editor at Breastcancer.org, and I’m very excited that we have a very special guest today. His name is Dr. Michael Krychman, and he is the executive director of the Southern California Center for Sexual Health and Survivorship Medicine, which is in Newport Beach, California. He is the former co-director of the Sexual Medicine and Rehabilitation Program at Memorial Sloan-Kettering Cancer Center. He is also a clinical sexologist and has a master’s degree in public health and human sexuality in addition to his medical degree. He is also an American Association of Sexuality Educators, Counselors and Therapists-certified sexual counselor and a member of the University of Southern California faculty, as well as an associate clinical professor of gynecological oncology at the University of California, Irvine and medical director of Ann’s Clinic, a high-risk program for breast and ovarian cancer survivors.

Dr. Krychman’s interested in menopausal health, hormone therapy, sexual pain disorders, loss of libido, and chronic medical illness and its impact on female sexual function as well as breast cancer sexuality.

He is the author of six books, and he is going to be writing a blog, which will be called Sex Matters, for Breastcancer.org, which we’re very excited to have in the future.

So, Dr. Krychman, welcome to the podcast. We’re so excited to have you as a guest.

Dr. Michael Krychman: Thank you, Jamie. It’s a pleasure to be on here with you, and chat about some of the important issues that our patients are facing on a day-to-day basis.

Jamie DePolo: Well, let’s start a little bit, talk about your background. How did you become interested in this topic?

Dr. Michael Krychman: Well, originally when I was out of residency training in obstetrics and gynecology, I was in Philadelphia. I found that the more questions that I asked about sexuality and quality of life considerations, the less I really knew, and the more problems that I had discovered with women as they changed in terms of their life cycle and went through chronic illness. After being recruited to Sloan-Kettering, my primary focus was on gynecological care for the cancer patient, and again, my side interest about sexuality and how it influences quality of life really came to the forefront, and we really started to focus on these issues specifically with patients and how it really impacts them. So again, I think for me it was the more questions I asked, I had to become more self-trained to learn to help address these issues with patients who were suffering really in silence, and they were coming to me really without any other opportunities or really any other healthcare providers that were really able to address their concerns. So, I found that as I asked more questions and became better trained, and was able to really see patients, the need was there, and, you know, the saying that if they build it, they will come, and through a lot of referrals and discussions, it’s really grown really exponentially.

Jamie DePolo: Well, and it’s interesting, that brings a question to my mind. I guess probably 20 years ago, when breast cancer was being treated, I think the sense was, “Here, this is the treatment, and the side effects aren’t really that important because the good thing is, you’re alive.” Now today, with cancer being considered a chronic disease, many, many more survivors that are living 10, 20, 30 years after being diagnosed and more, the side effects are really coming to the forefront because these people are living the rest of their lives with them, and we really need to find a way to deal with them.

Dr. Michael Krychman: Right. That’s completely correct. I think that, very much, the field of survivorship really was in its infancy. Now it’s really an integral part of cancer care. We know that cancer survivors will live a very long, vital life, and what I find exciting is over the past 2 decades of doing what I do, now I am actually seeing patients before treatment, and they’re weighing options and treatment interventions and saying, “What is my quality of life going to be thereafter? How is it going to impact me emotionally, physically? How is this going to impact my relationship as well?”

So again, I think these discussions are really coming to the forefront even at the beginning of treatment, and very much patient-driven. We know that survivorship and quality of life is really paramount in terms of overall treatment and aggressiveness of that treatment as well.

So, I think it’s a very important facet and really very important in terms of overall care for the cancer patient.

Jamie DePolo: Definitely. Now, what are some of the biggest sexual issues or side effects that you’ve seen that occurred during and after breast cancer treatment?

Dr. Michael Krychman: Well, I think, Jamie, the most important issue for breast cancer patients is how their treatment is going to impact them, both emotionally and physically, and hormonally. So we do see a very large percentage of women going into premature menopause, which has associated hormonal changes, whether it’s lowered estrogen and testosterone, and these certainly have a lot of impact. Many women have moderate to severe hot flashes, which are really debilitating. They may have profuse sweating. They may have to stop their activities of daily living. There’s also the issues of changes in the vaginal lining, which may lead to dryness and pain. And they really have far-reaching implications. They certainly affect their overall quality of life, they affect their relationships, they affect their intimacy as well. We certainly see lower libido as a result of this as well.

There are far-reaching implications from treatment, so what I like to do is really address those issues and recognize that there are problems really on all facets, whether you do surgery, radiation, chemotherapy, or you’re on medications for quite some time. These all have implications on the sexual response cycle, but they also have far-reaching implications not only on your physical body but what I would call your sexual self-esteem, how you view yourself as a sexual person.

Jamie DePolo: No, and I’m sure body image plays into that, too. I know a lot of women have commented on our Discussion Boards that their body image is very poor right after surgery.

Dr. Michael Krychman: Yes, and I think that’s very important to recognize. I think we need not minimize those changes, and the implications of changes in body, and really understand how this is really affecting a woman and how she views herself as a woman in today’s society. We are getting lots of messages, whether it’s from the media or newspapers or magazines about what the ideal woman should look like, and, you know, it’s very challenging.

So again, we need to reeducate women about body image and really understand what the new normal brings forward. Sometimes it’s really a reeducation process not only for her but also for her intimate partner as well.

Jamie DePolo: Sure. Now are there certain treatments that are linked or carry a higher risk of sexual side effects or sexual problems?

Dr. Michael Krychman: Well, I think it really depends on the woman. If you look at some of the literature we certainly know that the more severe the surgery, the more implications that there may be. So again, if someone’s having a partial mastectomy versus a complete total radical mastectomy, their outcome may be very different.

We also like to think that everybody’s response to reconstructive surgery is positive, but not everybody gets a positive result. Again, one of the other concerns is, we’d like to think that women fare better who have less aggressive surgery in terms of sexual outcome, but this may not necessarily be the aspect that we see. We may see differences in breast caressing during the intimate experience with those that had less aggressive surgery, but at the end of the day, their intimate relationships very much depend on their pre-existing function, their partner support, their sexual self-esteem, and how they view themselves as a sexual being.

In addition, Jamie, we also know that chemotherapy really is and has a lot of adverse effects on women, even the issues related to nausea and vomiting, as well as far-reaching implications of hair loss, certainly affect a woman and how she views herself as a sexual being and how she carries herself.

So again, we know that many women who undergo chemotherapy have premature menopause, and again, we talked about those issues of hot flashes, dryness, and even concerns about memory changes and chemo brain. Those could be very frustrating and compounded on sleep issues as well.

I’d like to also give you the impression that sexual health and general health are very much intertwined. We have to kind of put all the puzzle pieces together to look at the woman as a complete functional person, with not only diet, exercise, sleep, hair, and memory concerns, but also integrate all these aspects in order to really achieve good sexual health and functioning, as well.

Jamie DePolo: I’m wondering, too, about hormonal therapy. I know you mentioned it in premature menopause, hot flashes, all those issues. Hormonal therapy, to me, as not a physician or an oncologist, seems like it would almost have a higher risk because in most cases, and now with new research coming out saying that women should take hormonal therapy for 10 years after surgery and other treatments. And so those side effects -- I mean, 10 years is a long time -- whereas I’m thinking, or have read that for some of the things, like with chemotherapy, well, those can be ongoing as well, in most cases they ease slightly.

Dr. Michael Krychman: Yes. I mean, well, the way that we define it is the short-term effects and long-term effects.

Jamie DePolo: Okay.

Dr. Michael Krychman: And again, when you’re taking a medication for 10 years, it’s actually persistent effects, because it’s not stopping. And some of these are cumulative, meaning that the longer you take it, the more of a risk you may develop. So, certain medications may predispose you to abnormal bleeding, so the longer you take it, the more vigilant we need to be in terms of monitoring, per se.

For chemotherapy we certainly have immediate effects, like hair loss and memory changes. Those wax and wane with time, there are certainly interventions that you can do to improve, but we also know that there’s far-reaching implications. We also know that women that have taken chemotherapy, we need to monitor them carefully for cardiovascular toxicity. We need to monitor them for secondary malignancies, and these may appear very late.

So, again, there are early and late effects that are certainly implicated. So that’s why I am very fortunate to focus my career and my center on survivorship. These women really transition from their regular gynecologist, who really doesn’t really focus on a lot of these issues, and these women get a detailed gynecological and comprehensive evaluation and assessment. Many women who have breast cancer haven’t checked their vitamin D, they don’t know that their bones are at jeopardy. They do not know that their heart may need to be evaluated and assessed.

In addition, many women who are on tamoxifen haven’t really seen an ophthalmologist, and we know that that is very important, because they can develop cataracts at late term.

So, it’s really developing what we have coined the term ‘survivorship care plans,’ but I think it’s very important to recognize that that’s very individualized, and remember that women are aging and there are other chronic medical diseases that are superimposed on the cancer. So again, cancer is not unlike diabetes and hypertension. Just as we talk to someone who is overweight or has hypertension, we talk about diet and exercise, decreasing risk factors, so, too, do we need to talk to the cancer patient about sunscreen, about secondary cancers, about things in terms of enriching their bone health, as well.

So again, it’s an emerging field of medicine, but again, very specialized. I think it’s very important that women be aware of their needs, and their special needs, in order to thrive for many, many years even after the diagnosis of cancer.

Jamie DePolo: Definitely. Now I’m wondering, too, if a woman knows or feels she’s having some sexual function problems or other sexual issues, bringing up that topic with either an oncologist or perhaps your primary care doc, sometimes that can be very uncomfortable for people. It seems way too personal, and I know I’ve read some comments from women where they say, “Well, I don’t really want to talk about that with my oncologist because he or she is focusing on the cancer and I don’t want to take anything away from that.”

So, what’s the best way for women to bring this up, and who should they bring it up with? I mean, how can they make sure that they are getting the treatment that they need?

Dr. Michael Krychman: Well, I think you bring up a very good point. I think that there is really a very big disconnect, and the issue is there is really this conspiracy of silence. Clinicians feel that if patients feel that it’s important, they would bring it up. And on the patient’s side they say, “Well, you know, if it was important, then my clinician would bring it up.” So again, there is a very big disconnect. I’m hoping that with my blog called Sex Matters, we’re going to have resources that women can print, can download, they can bring to their clinician. I always say that sometimes it takes a lot of courage to broach the topic, but I think if it’s important enough for patients, there are resources available. There are clinicians around the country not only like me who specialize in breast cancer sexuality, but there are also other institutions that certainly can help, and I think a good clinician is not afraid of a second opinion. So again, you may want to broach it with your medical oncologist, you may want to broach it with your surgical oncologist, and again, maybe your gynecologist or sexual medicine specialist. I’m very fortunate, I have clients all over around the country and the world, so it’s very interesting. I do a lot of consultations because people really can get a hands-on view.

Jamie DePolo: Okay. Okay. So really, if I’m understanding you right, you’re saying that a woman should feel comfortable talking to any of her doctors about this.

Dr. Michael Krychman: Yes, and again, with the caveat to recognize that some people will be ill-prepared or will not know how to address those issues, and she should demand a referral. Again, there are a lot of networks available, cancer centers are now recognizing that sexual health is very important in the overall experience, and many of them are including sexual health as a topic to be covered in survivorship care planning. So, they may have identified a specialist in their specific area. And again, there are a smattering of us around the country that do a lot of consultations, whether it’s by phone, in person, or what have you.

So again, I think that it shouldn’t be discounted, discredited. I think people should be aware of the fact that there is help out there, that they can reclaim their sexual wellness, which is such an integral part of the human experience that I think it’s very important that it doesn’t necessarily need to be the end. It’s no longer okay just to be alive, it’s the quality of life. So I think quality is quite essential at this juncture in cancer treatment. I think it’s really exciting to be a part of this new wave of cancer survivorship.

Jamie DePolo: Definitely. Now you talked about how you think that more and more survivorship care plans do include sexual health. Do you think it’s in most of them, or is it just sort of starting to build now?

Dr. Michael Krychman: Well, I think it’s primarily in most of them, but whether or not institutions have resources available to address those concerns is different. I think we’re now growing in terms of our awareness of the importance of survivorship care planning. It’s going to be mandated as we move further along in the Affordable Care Act. Every woman will have to have a survivorship care plan where she needs to know what her secondary issues are, what her screening paradigm should be, and what she is at risk for.

So, I certainly am working toward trying to get sexual health and relationship issues into the forefront, and that’s why I’m doing podcasts like this, and doing Sex Matters, which I think will really help awareness for women. Really, I think women have an important role in the development of sexual health and intimacy. I think it’s very important not to just be alive, it’s the quality of life -- and demand that importance. I think we’ve been lulled into thinking that it’s okay just to be alive, but it’s not. I think quality of life and how you live your days is very important. I see many women making those decisions, and I think the important take-home message, Jamie, is that there are things that we can do that are safe, effective, that are not going to increase your risk for recurrence, or new cancer, or what have you.

So, it’s not hopeless and helpless. I think that that’s the important message. That’s one of the messages that I plan to bring forward in our blog that we are going to collaborate on in terms of sex matters, and sex does matter. Sex matters are very important to the human experience, and sexual health and general health are very much intertwined. There are things that we can do, little things can make huge differences.

Jamie DePolo: Excellent. I wanted to reiterate, too, when we’re talking about this, I know many people think, “Oh, well, this is probably just for younger women.” But no, we’re talking about all women from whatever age, if you’re diagnosed at 30, if you’re diagnosed at 70, sexual health is still very important.

Dr. Michael Krychman: Yes, and I would agree. I just looked in my office, and the earliest cancer patient that I’m presently seeing is 18 years.

Jamie DePolo: Eighteen years old?

Dr. Michael Krychman: Eighteen years old, and the oldest is in her 90s. So sexual health, intimacy, and relationships are all intertwined. I think that if women are concerned and it’s important to them, then clinicians need to stand up and listen. We need to help women help themselves.

Jamie DePolo: Exactly. The other thing I just sort of wanted to touch on, too, and you mentioned it, but I do want to reiterate it again, that each of these survivorship care plans is very, very individually tailored. So as you just mentioned, obviously a woman, a girl even who is 18, who’s been diagnosed with breast cancer is going to be facing some very different issues than a woman who is 90. But that is the importance of talking about this, I think, and talking about it with several doctors so you can make sure that everything that needs to be in that survivorship care plan is included.

Dr. Michael Krychman: Correct, and I think that’s very important, but there are some common needs, and again, I think it’s very important to individualize them. The standard treatment paradigms for cancer are changing, and no two people experience cancer the same. No two people’s home lives are the same, their partners are not the same, so we have to individualize. We have to start listening to patients and incorporate their specific needs into care plans, and really tailor it.

Again, it’s the same concept that certain women will tolerate certain levels of risk and other women will not. So again, I plan to give people a lot of ingredients in my column and they will have to make their own specific recipe that works for them. Part of it is starting the discussion. We’ve been living in silence too long about this concern, and I think it’s important to improve the conversation.

Jamie DePolo: Yes, I absolutely agree. I have one more question, too. When you talk to women, is the woman’s partner often involved in this or is it usually just the woman?

Dr. Michael Krychman: Again, not that I want to be evasive in the answer, I think it’s really independent. It’s really patient-driven. Sometimes the women will come in themselves and they have concerns about their own issues. Sometimes they have concerns about how their cancer has affected the relationship. Again, I would say many women bring their partners in, and partners are also going through a variety of changes as well. They want to be supportive, they don’t know how to act. Their previous behavior may not necessarily be appropriate or what have you.

So again, a lot of things are changing. So again, there is no hard and fast rule. I do think that if you do have a partner, it’s very important to have that discussion, whether it’s in the doctor’s office or with a clinician or with the woman herself, I think it’s important. I think we’re missing half the boat and half the story if we don’t involve the partner as well, but some women don’t feel comfortable about that. Again, I think it’s important not to put pressure on people that the partner must come. We don’t have hard and fast rules in my center. We encourage partners to be involved. We try to make it a very comfortable environment. And what we’ve found out is that many partners are willing and interested, and they’re just at a loss. They don’t have resources.

Jamie DePolo: They don’t know what to do. In other words, they just don’t know what to do.

Dr. Michael Krychman: So, it takes two to tango, but you can also dance alone. So again, I think it’s very important to incorporate partners when feasible, if available, and will really help the overall situation.

Jamie DePolo: Okay. Perfect. Now let’s talk a little bit, just briefly, before we go, about your blog, Sex Matters. It’s going to start, I believe, this month, or next month in June. Is there any chance you could give us just a little insight into some of the topics you might be covering in the upcoming months?

Dr. Michael Krychman: Well, I think we covered many of the topics today, but we’ll kind of go over them in depth. We’ll talk about premature menopause, we’ll talk about dryness, we’ll talk about even things like self-stimulators, how to revitalize your marriage, dilators, a whole variety of different things ranging from sexual medicine topics to sexual psychological issues, how you bring your sexy back, how to improve your sexual self-esteem, a whole variety of different important issues.

Importantly, Jamie, I want to reiterate that I want to hear from women, and I want to have them engage in the conversation and be vital in terms of advocacy. I want them to tell me what they would like to know about and hear about, what topics are important to them, what questions they have.

So, our plan really is to not only be informative and give people information but also address patients’ issues and concerns as well. So with that, I’m really hoping that people will get engaged, involved, and really continue and tailor the discussion to meet their needs and their important aspects.

Jamie DePolo: Definitely. So it will be a conversation rather than a lecture.

Dr. Michael Krychman: Yes.

Jamie DePolo: Perfect. Dr. Krychman, thank you so much for joining us today. This has been very great. Thank you everyone for listening to this edition of the Breastcancer.org podcast, and we look forward to reading many, many Sex Matters columns from Dr. Michael Krychman, our guest today. Thank you so much.

Dr. Michael Krychman: Thank you so much for having me, and I hope to come back soon and talk more sex matters.

Jamie DePolo: That would be fabulous, thank you.

Dr. Michael Krychman: Have a great day, and thanks.

Jamie DePolo: You, too.