Tendrils – A Sexual Renewal Program for Women Surviving Cancer

MD Anderson Cancer Center
Date: 01/24/2011

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Lisa Garvin: Welcome to Cancer Newsline, a weekly Podcast series from the University of Texas MD Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment, and prevention providing the latest information on reducing your family's cancer risk. I'm your host, Lisa Garvin. Today we have Dr. Leslie Shover with us. She is a professor of behavioral science here at MD Anderson and also Pamela Lewis who is the senior behavioral research coordinator who may chime in from time to time. Dr. Shover, we were talking about you've been working with sexual problems in cancer patients for 30 years now.

Dr. Leslie Shover: Yes. It was 1981 when I first came here to MD Anderson. And so in those days, you could be a pioneer just by talking to patients because no one was asking them about these problems and we had a lot to find out.

Lisa Garvin: And it sounds like that's culminated in a website for women. And let's talk about your study. It's called Tendrils and it's a sexual renewal for women after cancer treatment. So you've probably found some commonalities through the years and you're trying to kind of quantify this data. Correct?

Dr. Leslie Shover: Well, the idea of this website is that even after 30 years and all the changes in our culture during that time, I still find that when women need answers, they develop a sexual problem after their cancer treatment. They often are not able to get the information they need even though we have a lot of techniques now that can help women. And in fact, we had a woman called today and she said she asked her doctor about her sex life, and her doctor said, "You should be glad you can walk out of here. Why are you complaining about sex?"

Lisa Garvin: Oh, my goodness.

Dr. Leslie Shover: And I hear that all the time. It makes me so angry and upset.

Lisa Garvin: First of all, let's talk about what Tendrils is. It's a personalized website?

Dr. Leslie Shover: Yes. Tendrils is actually a very complex website that's intended as an educational and counseling tool for women with all different types of cancer anywhere from being at high risk to long term survivorship, and they're also include sections about fertility and pregnancy, and health of children born after cancer. So it's really kind of everything I know in a website. And it includes not only text and pictures, and drawings and animations, but we interviewed 11 women about their sex lives after cancer. And we actually constructed some cases to illustrate points and we made videos with actors to show things like good versus bad communication and what can happen, for example, if you had a history of sexual trauma in the past and then got cancer and how you might deal with that. So it's got pretty much the kitchen sink in it.

Lisa Garvin: And this is part of the clinical trial that women can enroll in. What sort of women are you looking for, for the Tendrils trial?

Dr. Leslie Shover: Well, even though the website itself is, you know, going to be available for all different kinds of cancers. But right now, we're looking for women who've either had breast cancer or one of the gynecologic cancers like cervical, ovarian, vulvar cancer, and who are, about one to five years out from their cancer treatment and currently aren't taking anything other than maybe some hormonal therapy and are in a relationship. So those are the main things and the reason for that is that we're actually looking to find out what is the best way to use this website? So if women enter the study, they get randomized like by the toss of a coin into one of two groups. And one group uses the website for 12 weeks on a self-help basis and we then look and see how they're doing, again, with their problems and follow them for another three and six months. But the second group during those 12 weeks also comes in for three individual counseling sessions. So we wanna see if the added individual counseling makes our results better.

Lisa Garvin: Now, some of the self-help tools on the website, are these things both self-help like actual exercises they can do or is it also communication skills or both?

Dr. Leslie Shover: All of the above. We have suggestions for self-help things that woman might do on her own or with the partner and if she's interested in seeking medical help, we have a lot of information about what kinds of medical treatments might be helpful and what kind of doctor to look for. So, you know, we go into all those things. We also have special information for partners. And in a lot of the sections, there are hints for partners, things a partner can do to be supportive, and we have a whole section for lesbian women and also, of course, many of their needs are just the same as heterosexual women. And we have a section for parents of kids who had cancer.

Lisa Garvin: Is there the hope that face-to-face counseling might add an additional benefit on top of the self-help and other things that women can do?

Dr. Leslie Shover: Yes, because, you know, we know that in a cancer center, it's often the nurses and social workers who release it down with patients and talk about this. So we've created a therapist manual that might be helpful to someone like that, that didn't have special training. And we wanna see if maybe the counseling might help women kind of find the pathway through the website and find the parts that are most relevant, or if they had direct personal, you know, questions they wanted to discuss. Our idea is that perhaps older women or women who have less education, less contact with computers might benefit the most from additional counseling.

Lisa Garvin: Do you find that their resources for women are still really not out there even 30 some odd years later? I mean it seems like searching the website, there is this very little to be found.

Dr. Leslie Shover: Yes. You know, you can find things online like some of the breast cancer websites, have information about sex. I had written a self-help book which is out of print now which was fairly detailed, but there's really nothing like Tendrils because it has so much information in it and it's so comprehensive. And even some of the more recent books for women are more anecdotes about, you know, well, I had ovarian cancer and this is what happened to me which is always nice, you know, not to feel alone, but you really want more than that. You wanna know what can I do, you know, what kind of lubricant can I use if I have vaginal dryness or how often should I be, you know, using a vaginal moisturizer or what's vaginal dilator and could it help me, those kinds of things.

Lisa Garvin: What about professionals though, because it sounds like that's where part of the problem is, is that their primary care doctor or any other doctor just really doesn't wanna talk about it and kind of shunts them off. Is there any way of addressing the professional road blocks to talking about sexual situations?

Dr. Leslie Shover: Well, you know, we've been trying to do that for 30 years. And, you know, one problem is that mental health counseling is very poorly reimbursed by insurance. So there aren't that many mental health professionals like I'm a clinical psychologist. There aren't that many of us who know about sex therapy and about cancer so you know, you add that level of specialization and then you add the fact that maybe there are, you know, 30 or 40 people at most like that around the country. They are focused in big cities and they charge a lot of money and a lot of people can't afford to go. So that's one problem. And also, even with gynecologist, women go to their gynecologist and expect that their gynecologist will know a lot about sexuality. But gynecologist are surgeons and they are obstetricians and often they've had very little training in women's sexual problems and especially complex problems like pain with sexual activity. They often are kind if impatient. And when a physician feels helpless and like he or she doesn't know what to do, that's when you get these, well, what, you should be glad to be alive and why are you bothering me kind of responses.

Lisa Garvin: Now, for Tendrils, when did you open the trial, how many women do you hope to accrue in about how many years are we going to have to be accruing data?

Dr. Leslie Shover: Well, the trial has been open for about 3 months and we have around 50 women and we hope to get 240. So we would like to be through getting women into the trial in the next year and we hope that our results will be, you know, definitive enough that we can then revise the website and get it ready for general use.

Lisa Garvin: How would women find out about this trial? Do they call a phone number? Is there some where they can go if they're interested in Tendrils?

Dr. Leslie Shover: Well, why don't I let Pam answer that?

Pamela Lewis: Sure, we--well, they can call me at 713-745-5535, or they can contact me to set up a time to do a--well, complete phone screening at P, as in Peter, Lewis, L-E-W-I-S at mdanderson.org.

Lisa Garvin: So do the women have to be MD Anderson patients to be in the trial?

Pamela Lewis: No, they do not have to be MD Anderson patients.

Lisa Garvin: Okay, great. But throughout your research, Dr. Shover, you have found commonalities in terms of types of sexual dysfunction and sexual issues, correct?

Dr. Leslie Shover: Yes, you know, there are many ways in which different cancer treatments can affect a woman's sex life. If a woman is not menopausal and she goes through a strong chemotherapy, her ovaries may fail and she may go into premature menopause. If she has radiation to her pelvic area, it can affect not only her ovaries but her vagina and clitoris as well. And, you know, there're other examples. I could certainly give you surgeries that remove part of a woman's reproductive system. But what we find is that the kind of sexual problems women have kind of grouped into a fairly, you know, small number. Very common ones are having vaginal dryness and pain when they have sexual caressing or intercourse, and then losing desire for sex. And, you know, a lot of the time, if sex hurts, you don't look forward to it or wanna do it. And so, the pain can be a big factor in losing desire. And also, because you're not in the mood for sex and it doesn't feel good, it's hard to reach an orgasm, we get some women who have difficulties reaching an orgasm. And those are really the most common types of sexual problems we see. And there are some relatively easy and simple, you know, things that women can do to prevent losing their sex life to begin with and to overcome some of those problems once it happen.

Lisa Garvin: So your hope for Tendrils is to kind of hone in on what the problems are and what the solutions are.

Dr. Leslie Shover: Yes, but I hope Tendrils will become is a place where any woman at high risk for cancer or who's had a cancer diagnosis can go to find out how her treatments might affect her sex life. And if she has a sexual problem, to find out what remedies are available. Try some of the self-help ones and have a better idea of how to seek medical health and communicate with her physicians.

Lisa Garvin: So cancer doesn't mean the end of a healthy sex life?

Dr. Leslie Shover: I don't think it should.

Lisa Garvin: Great, thank you both for being with us today. If you have questions about anything you've heard today on Cancer Newsline, contact askMDAnderson at 1-877-MDA-6789 or online at www.mdanderson.org/ask. [Background music] Thank you for listening to this episode of Cancer Newsline. Tune in next week for the next podcast in our series.

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