How to Talk to Your Oncology Team About Sex and Fertility

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Topics include: Emotional Well-Being and Intimacy and Relationships

Can cancer patients still enjoy sex? How will fertility be affected after treatment? Although it can be an uncomfortable topic for some to broach, it’s time break the taboo so that patients and caregivers can maintain fulfilling sexual and intimate relationships after diagnosis. Expert Dr. Leslie Schover, a clinical psychologist and founder of Will2Love, joins Patient Power to open up the conversation and address cancer’s effect on sex and fertility. Watch now to hear answers to common questions about sexual intimacy during treatment and resources available to help patients navigate the path to sexual health.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr.  I'm so delighted to connect you now with Dr. Leslie Schover, clinical psychologist who for like 40 years or more has been an expert in sex, sexuality, fertility related to people dealing with cancer.  She was at MD Anderson for many years and also at the Cleveland Clinic, two noted institutions.  Leslie, thank you so much for joining us. 

Dr. Schover:

Well, thank you, Andrew.  This is a great opportunity, and I appreciate it. 

Andrew Schorr:

Now, couple of years ago you founded something called Will2Love, and you're very devoted to helping people with these issues of sex, sexuality and fertility related to cancer.  What is Will2Love? 

Dr. Schover:

Will2Love is a digital health company.  We're completely online, and we offer services directly to cancer patients.  We have online self-help programs separately for men and women that cover all cancer sites and give lots of education and self-help strategies and guidance on medical options for sex or fertility problems related to cancer. 

And right now we're doing a study with the American Cancer Society where people can actually if they want to participate, access those programs for free for up to six months.  So if you go to our website, will2love.com, the first time you go there on any day you'll see a pop-up with information about joining the study. 

We also train oncology health professionals with an online training portal, and we're just starting to offer services from expert psychologists who can actually use telehealth video conferencing similar to this to counsel patients. 

Andrew Schorr:

Wow.  Well, what a wonderful service, and Leslie thank you for turning all the expertise from your career at these major institutions into founding this.  All right.  Well, let's go through some of the issues people face.  From your experience, what are some common issues that cancer patients face when it comes to sex and fertility? 

Dr. Schover:

Well, one of the first issues is that people just are not talking about it enough.  So when you look at surveys of cancer survivors they're pretty consistent that only half of people recall anyone from their oncology team bringing up the topic of sexuality or fertility. And if they did, it's typically just for a couple minutes during the informed consent without following up later on when quality of life gets to be maybe more central, and people are a little bit less anxious about what's my treatment going to be, and what's my prognosis. 

So that's a big issue because if nobody talks about sex or fertility how are patients going to get the information they need? 

Andrew Schorr:

Is some of it that the providers are just not comfortable with it? 

Dr. Schover:

Yes, I think so although they tend to deny it.  They'll say, oh, I'm perfectly comfortable talking about it, and you say, and again multiple surveys always agree, like do you think it's important to talk about sex to patients?  Oh, yes.  Well, do you do it routinely?  No, because if the patient wants to talk about it, they'll ask, and then I'll talk about it.  And, of course, other surveys suggest that maybe only 10 percent of patients are assertive enough to bring up in a medical clinic the topic of their sexual questions and concerns, so the topic gets ignored. 

And whatever profession you ask they say it's the other guy's job.  So doctors say, well, the nurses should be doing those talks, and the nurses go, no, no, the doctors should do that, and psychologists and others say, well, somebody else should be doing it, not me. 

Andrew Schorr:

It doesn't happen.  Let's talk about fertility for a second, let's say for younger women and maybe men diagnosed with cancer, I know that this whole term of oncofertility is relatively new, and for a long time we're going to blast your cancer, and there may be toxic effects of that. Oh, and we're not even thinking about fertility, but it's something that really needs to be discussed particularly for this group that's a little younger and hopes to have children, right? 

Dr. Schover:

It's crucial.  We did a study of women diagnosed at age 35 or under 10 years after their cancer treatment, and those that had wanted a child at the time of their cancer treatment and weren't able have one were still very distressed, so infertility is a life-long regret and grief for people who don't overcome it. 

And for men we have sperm banking, which should be a no-brainer, and for women fertility preservation is more complicated, but it's gotten a lot easier than it was a few years ago.  One of the problems is expense, particularly for women a because these procedures can cost $10,000, and you're busy wondering how you're going to pay the cancer treatment bills, and all of a sudden someone wants all this money out of pocket.  So there are a number of charitable groups and advocacy groups that try to get discounts or give scholarships to young patients to enable them to do fertility preservation. 

Andrew Schorr:

So let's just talk about key questions for our younger patients.  What should they be asking when they're about to embark on cancer care that yet this is important to them, hopefully with a longer life? 

Dr. Schover:

As early as possible in treatment planning they should be asking, are any of the treatments you're planning likely to damage my fertility in the future?  And if the answer is yes the next question should be, can you refer me to somebody for sperm banking or fertility preservation so I can discuss it as early as possible and give myself the best chance? 

Andrew Schorr:

Okay.  Now, with most cancers I understand they've been developing over time, and while the patient may feel it's a five-alarm fire a concern they may have is, well, gosh, I don't know if I have time to see that fertility specialist because I want that breast cancer out.  Testicular cancer, I want it dealt with now, whatever it may be.  But in truth except for some very acute cancers they do have the time to do that, don't they? 

Dr. Schover:

That's exactly true.  I mean, one of the exceptions would be acute leukemia where it may be a true life-threatening emergency.  For men if they can even bank one sample before they start chemotherapy or pelvic radiation that could be the difference in the future of being able to have a child. 

And for women really some women can have laparoscopic surgery to remove ovarian tissue which might delay treatment for just a couple of days.  But the more standard procedure is a cycle of ovarian stimulation and harvesting eggs, and that only takes 10 days to 14 days these days.  You can start any time in a woman's cycle and get her lined up.

Andrew Schorr:

And I can see it would really help in looking forward to the future.  Okay.  So we talked about fertility but now let's talk about sex.  So you're terrified with your cancer diagnosis, you're tired, you're worried, your spouse is worried or your partner, but what place does sex have either early on or ongoing?  Let's just talk about the idea of having sex be part of your life, even though you're dealing with cancer. 

Dr. Schover:

Yes, and it's been kind of amazing to me that fertility gets a lot a lot of attention, because everyone wants, you know, cancer survivors to have a baby, but what we talk about sex it's taken a lot longer.  For example, the American Society of Clinical Oncology just finally published guidelines on sex and cancer about two months ago, and we've been begging them for years.  And they'd started with their oncofertility guideline in 2006, yet because the average age at diagnosis of cancer is 66 there's a lot more patients affected by sex than by fertility.  They're both important and different, but it's much harder to get people's attention for sex. 

I think that something that's very important that people don't realize is that my estimate is that about 60 percent of cancer survivors will end up with long-term, severe sexual problems.  And we think about, okay, the guy who has a prostatectomy or a women who has breast cancer with breast reconstruction and chemotherapy, those are some of the obvious ones, but even people who have lymphomas or leukemias, certainly people who have stem cell transplants and now with our wonderful new immunotherapies, and you know those seem to have sexual side effects as well.  So there's not too many people who escape some kind of change in their sex life. 

Andrew Schorr:

Well, we're going to talk about all of this as we go forward.  We have another segment with you, Leslie, specifically talking about the sexual issues for men and women.  So you take it all together, though, I guess the bottom line is when someone is diagnosed with cancer certainly asking questions, will this affect my fertility, men or women, and then certainly the whole discussion of sex and sexuality which we will discuss in the next segment.  Speaking up, right, is so important. 

Dr. Schover:

It is.  We have a public health a campaign called Bringing It Up, Sex, Cancer and Fertility, and it has its own little website bringitupsexandcancer.com.  And we have a three-step plan for patients.  One, ask at the beginning of an appointment and say, I have a question I want to make sure we get to. 

Prepare your question in advance, whether it's, will any of these treatments affect my sex life or, gee, I've already developed an erection problem, now what do I do. 

And three, don't leave without a plan for something to do next because it's fine for the oncologist to say, oh, I'm so sorry you're having that problem but we'll talk about it when you come for your next follow-up in six months. 

Andrew Schorr:

Okay.  Great advice.  We'll be discussing the sexual issues in our next segment with you.  Dr. Leslie Schover with Will2Love, thank you so much for your devotion to people living with cancer, affected by cancer and these very important issues that need to be discussed a lot more.  Thanks for being with us, Leslie. 

Dr. Schover:

Thanks. 

Andrew Schorr:

I'm Andrew Schorr.  Stay tuned for all of our discussions with Dr. Leslie Schover, and we always welcome your comments and suggestions.  Remember, knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on March 1, 2018