Leslie R. Schover, Ph.D.
Professor of Behavioral Science
The University of Texas MD Anderson Cancer Center
Dr. Baile: Hello, I'm Dr. Walter Baile, Director of the MD Anderson Program on Interpersonal Communication and Relationship Enhancement. We're happy to welcome today for our I*CARE Roundtable discussion Dr. Leslie Schover. Dr. Schover is a clinical psychologist and professor in the Department of Behavioral Science with a special interest in sexual problems and infertility-related distress after cancer. Dr. Schover received her Ph.D. in clinical psychology from UCLA in 1979 and then completed a post-doctoral fellowship in sex therapy and sex research at the State University of New York at Stony Brook. She was subsequently an instructor in psychiatry at the Baylor College of Medicine for a year in 1981 and assistant professor of psychology in urology at the University of Texas MD Anderson Cancer Center from 1982 to 1986. Dr. Schover then was staff psychologist at the Cleveland Clinic Foundation until 1999 when she returned to MD Anderson where she's currently Professor of Behavioral Science.
Dr. Schover's research interests include developing interventions to ameliorate sexual problems and distress about infertility after cancer as well as understanding the role of reproductive health problems after cancer in overall quality of life. She's the author of 88 peer reviewed journal articles, 27 book chapters and 4 books as well as the patient education booklets published by the American Cancer Society, Sexuality and Cancer for the Women with Cancer and her Partner, and Sexuality and Cancer for the Man with Cancer and his Partner. She's recently completed projects funded by the American Cancer Society to develop an internet-based version of a sexual counseling program for couples after prostate cancer and by the National Cancer Institute to develop and evaluate a peer counseling program on reproductive health after breast cancer in partnership with Sisters Network Incorporated, a national advocacy program for African American breast cancer survivors. Her current projects include small business grants to produce and evaluate a computerized educational tool and decision aid on banking sperm before cancer treatment and for men to help regain sexual life after cancer. Also a multimedia intervention for sexual renewal for women after cancer. Thank you, Leslie, for coming today.
Dr. Schover: Well, thanks for inviting me.
Dr. Baile: Great. So you know we haven't had many folks talk about the issue of sexuality and reproductive health and infertility after cancer, during cancer for both patients and their partners, and I wonder if you could tell us a bit about the importance of this issue.
Dr. Schover: Well, if you look at some of the recent survivorship surveys like the one that was done by the Lance Armstrong Foundation or a recent very large survey of breast cancer patients by the Cancer Support Community, actually, you know, sexual issues typically come up in the top two or three concerns. So, you know, they're more important than people might think. I actually had a little tantrum recently because our patient education people were doing a booklet and they started out by saying, of course, when you're diagnosed with cancer sex is the last thing on your mind. I realized that we've started a lot of booklets that way and I said you know what that may be true for some people but it's not true for others. For some people having a cancer treatment that preserves your fertility or your sexual function is actually way at the top of the priority list.
Dr. Baile: Right.
Dr. Schover: And I've certainly counseled patients who were going to refuse potentially life-saving treatments because of those issues, and I said if you start your booklet that way those people will feel like there's something wrong with them.
Dr. Baile: That's an interesting point because recently I've also had a patient who was scheduled to have a bone marrow transplant for lymphoma and he was actually put off the transplant to pursue sperm banking. So, I think you're right in that observation that it's really a, I don't know if we could call it a hidden agenda but it's not something that patients always feel overtly able to bring up with their clinicians. Do you find that's a barrier in getting attention to these issues?
Dr. Schover: Definitely. I mean with both fertility and sexuality all the surveys that have been done suggest that patients would very much like more attention, you know, coming from their healthcare practitioners about these issues and that when you leave it up to patients maybe 20% of people bring up a problem or a concern that they're having.
Dr. Baile: Can you talk about some of those concerns? What's top on patients' lists about the relationship between recovery of sexual ability or infertility that maybe doesn't get articulated?
Dr. Schover: Well, I think that when it comes to fertility it, you know, affects a much smaller percentage of patients although for men, you know, we see men sometimes who are in their early 60s and have a new wife and are still interested in having more children and sometimes their needs, you know, to bank sperm before they start their cancer treatment get ignored because nobody thinks about that, but you know in general I think for both men and women, you know, the great majority of people who are childless when they're diagnosed with cancer would like to have a child in the future. So if there is a way they can do some kind of fertility preservation whether it's through banking gametes or having more conservative cancer treatment they're very interested in that and, you know, as I'll say in my talk today you have to make those decisions before your cancer treatment. We don't have a time machine so we can go back and redo what wasn't done. So, there's a narrow window of time to make some pretty complex choices.
Dr. Baile: So, staying on this topic for a second, do you find that there is a gap in the way that these issues are addressed in everyday treatment of cancer patients who may have issues with fertility or reproduction? Are they commonly not brought up by the treatment team and do patients feel uncomfortable about bringing up issues related to having children or their own sexuality?
Dr. Schover: I think patients are less uncomfortable bringing up fertility than sexuality, but the ASCO, the American Society of Clinical Oncology, developed guidelines for clinical practice that were published in 2006 that basically said if a cancer treatment is likely to cause infertility you should address that with your patient beforehand and offer them whatever options are relevant and two surveys were done in 2010 that showed that half of oncologists are still not following the guidelines.
Dr. Baile: Right.
Dr. Schover: And it's particularly bad with, you know, pediatric oncologists with girls where something like 14% of oncologists in one study mentioned anything about fertility preservation.
Dr. Baile: Now, having worked in the area of communication skills for a while that I'd be interested in your impression about whether or not this is something that either isn't on their mind in the face of a new cancer diagnosis or that people don't know the words to say to bring it up or they don't have the answers for how to refer people. What do you think the issues are about not bringing up the issue, the idea of reproduction with a newly diagnosed young person with cancer?
Dr. Schover: Well, one real empathy I have with oncologists is they're under increasing pressure to see more and more patients in less and less time and they have so many different complex issues that they're supposed to discuss with patients that I think it's easy for fertility and sexuality to fall off the radar. Very few oncologists would admit that they're uncomfortable with discussing any of those things, but I do think especially sexuality is often something that is difficult for oncologists to bring up but I think one of the major barriers is time pressure.
Dr. Baile: Right.
Dr. Schover: You know you realize these are complex issues, they're going to take some discussion time and your clinic is already an hour over booked and, you know, there's a natural tendency I think to say, well, maybe we could skip this one today.
Dr. Baile: I recently had an opportunity to be on a webinar around the issue of patient-centered care and around shared decision making for cancer treatments and, you know, the same issue came up that it really takes a lot of time to inform patients and to get them the right information and encourage them to participate in decisions. So one of the solutions to the issues that were brought up was whether or not patients could have a non-physician coach who might be a nurse or someone who had a focus on sexual issues, someone like yourself who might be in a department of urology or lymphoma or gynecology and has anyone been exploring that issue at all?
Dr. Schover: That's something I've been advocating for many years that, you know, in each site specific clinic it would be great to have like what we call mid-level providers at MD Anderson, a nurse clinician or a physician's assistant who got, you know, some special training in the sexual and fertility issues related to the treatments that they do for the cancer site and who could sit down with patients and take more time with them. The other thing that I've been working on is these Internet-based informational and counseling interventions and the reason I've been doing that is I know how bad things are even in a major cancer center like ours and I know how much worse it is for people who are out in the community where so few health care professionals have the expertise and patients are given misinformation and no information. So, you know, having some source that's easily accessible whenever patients want it I think is also part of the solution.
Dr. Baile: You talked a little bit about infertility, but I really was focused on the phrase "sexual recovery" that you used, which I think is really a very nice way of taking a look at how people resume their normal sexual life, intimate life after cancer. What are the questions that come up in your experience with men and women in the period of early survivorship after cancer?
Dr. Schover: Well, depending on the kind of treatment they have especially if they had surgery, that's often when their sex life is going to be most severely affected. So, you know, one concern is how much am I going to recover and for men that often focuses on whether they're going to recover firm erections or whether any of the treatments that we have to try to restore firm erections are going to work for them and for women it often focuses on intercourse being painful due to vaginal dryness and tightness and things like that. Of course for patients who have pelvic radiation therapy the timeline is different. They may be relatively okay once the initial irritation heals but then over the next several years they may actually lose sexual function. So, you know, it depends a lot.
Dr. Baile: Do you know any places that, for example, that have a sexuality clinic that accommodates patients for counseling regarding sexual activity after cancer? Because it would seem to me that ignoring this very important issue of your intimate life with your partner is something we need to get past and get over and I wonder whether we're moving in a direction where we are providing more information to couples about that kind of activity.
Dr. Schover: Well, to me the best model is multidisciplinary because most of the problems are physiologic changes caused by cancer treatment. So you often need some kind of medical treatment but the counseling piece is very important too because a lot of couples don't have very open sexual communication and it's not easy for them to change their sexual routine to accommodate, you know, the medical treatments. So, actually there are a very few cancer centers that have that type of clinic where, for example, a psychologist and neurologist or psychologist and gynecologist work together. We finally have that now for women in our gynecology area and in urology we have a urologist who has a clinic a couple of days a week but we don't have the luxury of having the counseling piece for him and at Memorial Sloan-Kettering they have two very separate clinics, one for men and one for women, where they do operate on that kind of a model.
Dr. Baile: So, in general, it might be said that we really underestimate the importance of sexuality/fertility issues in patients during their cancer recovery and I remember the old adage, you know, that you should just be lucky you're alive and I think with the, my impression is that with the cancer survivorship movement and the fact that we have so many more cancer survivors than we did 20 years ago. Even this issue of sexuality will become even more important as we try to restore people to an almost normal, as normal as possible level of functioning and I wonder, I know you're doing some research in the area of counseling patients and their partners. Could you say something about some of your programs and what you found works, what you found people respond to?
Dr. Schover: Well, you know, a lot of my research is focused on how can we do this cost effectively on a more national basis because people like me who are cross trained in psycho-oncology and sex therapy are rare and we mostly exist in large cities and large cancer centers. So, that's never going to solve the problem and with our mental health system insurance coverage gutted, you know, very few people have access to that kind of care. So I've been working on things like, you know, Internet-based materials that are interactive, that hopefully people could access and try self-help strategies and monitor their progress and do that with their partner if they're in a relationship or peer counseling where you take somebody who has adjusted pretty well to their cancer and give them a little training and, you know, empathy and counseling and give them accurate medical information and have them work with, you know, survivors who are having problems and, you know, both those things work to some extent. What we find is, you know, an interactive Internet program or peer counseling is probably better than handing somebody a self-help book. The only people who really read and buy self-help books are women in their 50s.
So, you know, they have a limited, college-educated women in their 50s, so they have a limited audience, but the more brief cost-effective programs work for some people but they certainly aren't as effective as one-on-one counseling.
Dr. Baile: Right.
Dr. Schover: Especially if people had pre-existing problems like they had history of depression before their cancer or their relationship has really poor communication or a lot of conflict. Those people may need extra help but, you know, maybe 80% of people who go through cancer treatment are really well functioning people with good coping skills and if you give them information and techniques and ideas, you know, they ought to be able to do better than they do with nothing.
Dr. Baile: So are there sites that patients and their partners can go to that will give them information about, for example, what to expect sexually after prostate cancer or what to expect after you've had, you know, hysterectomy or oophorectomy for ovarian cancer, are there other sites?
Dr. Schover: There are some. Give me a couple of years and we'll have something a lot better. [laughter] I've have an email from a very well-educated breast cancer survivor a couple of months ago and she said I've looked all over the Internet and I've discovered that I should wear a camisole and buy a lubricant and, you know, I think that it's true that a lot of the information in self-help books or on the Internet is very superficial. Some information on the Internet is actually dead wrong and a good example is robotic prostatectomy for prostate cancer, you know, it's been touted as being able to preserve erections and good urinary continence, but there was a recent study looking at men from diverse places across the country and 88% of the men who had laparoscopy with the robot actually had erection problems and I think that in general there's been a real inflation of the rates of recovery of erections and recovery of continent urination after prostatectomy and it's similar for other kinds of pelvic surgery too. So, what we see is a lot of angry men who said, you know, I was told that, you know, you're 62 years old and you have good erections and I'm going to do nerve sparing and you're not going to have a problem and I have a big problem. So, I think it's really important to give accurate expectations before surgery and what I tell men is when it comes to prostate cancer there's no free lunch. Whether you have radiation therapy or surgery you're likely to end up with some problems that are likely to be permanent.
Dr. Baile: Well, I hope that also doesn't become a barrier that someone who doesn't recover sexual functions think that there's something else wrong with them and, you know, not say anything. That would be a tragic thing that could happen to people who do want to pursue their intimate relationship with their partner.
Dr. Schover: Well, I think urologists more than a lot of other oncology specialists are more likely to bring up the topic and offer treatments to men who are having erectile dysfunction part of that is because of the belief that if you keep on having regular erections after pelvic surgery you may have a better chance of regaining firm erections. They call that penile rehabilitation.
Dr. Baile: Right.
Dr. Schover: So they're apt to give some either oral or injectable medication to men in the early months after surgery.
Dr. Baile: I know you're very interested in training actually and we talked briefly about a training grant that you are putting together and I wonder if in training programs for urologists and gynecologists now that there's any interest in incorporating sexual counseling into the curriculum for young people who go through residency and fellowship in both of those fields? Do you see any movement in that area?
Dr. Schover: Well, haven't been in direct urology and gynecology training settings a lot in recent years but my impression is in general that the amount of time that's spent to train young physicians about how to talk about sexuality even in those specialty programs is pretty slim. They get a lot more training in the physiology and in the medical treatments, but not a whole lot of training in how to talk to patients.
Dr. Baile: Well, I know it's an ideal but perhaps as we move toward more patient-centered care that we could be teaching our fellows and residents how to have these difficult discussions and, you know, perhaps that if they could do it efficiently the time, the fear of losing so much time and having them won't be seen as a burden?
Dr. Schover: I hope so. I mean I think sometimes you preach to the converted because there are some physicians who are very patient centered and they're the ones who often take the time to discuss these things and there are some who are very nuts and bolts and don't really like and enjoy talking to patients all that much and, you know, as I'm sure you well know really hard to change their behavior.
Dr. Baile: It is hard.
Dr. Schover: But it's worth a try.
Dr. Baile: We'll be looking forward to some of the outcomes of your research and producing online material and tools for patients and their partners to have more in depth information about sexuality and infertility and we hope that sometime in the future that some of your projects to train other people to have these discussions directly with patients and families will be successful. So, thank you very much for meeting and having this discussion today. We've been meeting with Dr. Leslie Schover, Professor of Behavioral Science at MD Anderson Cancer Center. Thank you again, Leslie.
Dr. Schover: Thanks.
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