Leslie R. Schover, Ph.D.
Professor of Behavioral Science
The University of Texas MD Anderson Cancer Center
Dr. Baile: Okay, why don't we get started? Good afternoon, welcome to the ACE lecture today and as I understand we're competing with other lectures on pain and sleep. So I hope this--I'm sure this will be probably more interesting hopefully and I'm Walter Baile, I'm Director of the I*CARE program that's supports the ACE lecture series and a few little housekeeping things. If we could ask you to mute your cell phones and pagers so we don't interrupt the speaker. I'd be very appreciative. So I'm really happy today to have Dr. Leslie Schover in the Department of Behavioral Science as our guest speaker today. Leslie is a clinical psychologist by training and professor in the Department of Behavioral Science with a special interest in sexual problems and infertility related distress after cancer. Her research interests include developing interventions to ameliorate sexual problems in distress about infertility 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 number of patient education pamphlets and materials developed for the American and published by the American Cancer Society. Great, Leslie is well funded in the area of research in related to fertility and sexual dysfunction after cancer. She's developed an internet based version of a sexual counseling intervention for couples after prostate cancer. She's funded by the NCI to develop and evaluate a peer counseling program on reproductive health after best--after breast cancer and currently has several small business grants to produce and evaluate a computerized educational tool and decision-making aid on banking sperm before cancer treatment and to help men regain sex life after cancer and women, a multimedia intervention for women after occult sexual renewal. So, thank you very much for agreeing to come and speak to us today, [inaudible].
[ Applause ]
Dr. Schover: Well, it's great to have an opportunity to talk in my own Institution about some of these important issues and I--I wish Walter, I was as well funded as you made it sound [laughs]. I'm okay for now.
[ Inaudible Remark ]
Okay, unfortunately a lot of those grants are finished, but--[laughs]--why people may ask, why is sexuality an important issue in cancer survivorship? Well, of the 12 million cancer survivors in the US, 69 percent have actually had prostate, breast, GYN, urinary track or colo-rectal cancer and at least half of those men and women are going to end up with sexual dysfunctions. And not only that but these problems don't go away. They are severe and they persist over time. Why is sexual activity of value outside of the momentary pleasure because it helps maintain connection to a partner, it's a way to feel vitality and pleasure when you're facing a life threatening illness. Many men and women really value the ability to fulfill their partner's sexual needs as well as their own. Self-esteem often people will say, "I don't feel like a real man or a real woman anymore." And then there is the physiological maintenance of the health and this is a typo, I thought I had corrected it of the endothelial cells in the genital vasculature. So we do have some micro issues as well as the macro ones. And in general if you keep blood flowing into the genitals by having periodic sexual arousal, you may prevent some genital fibrosis and atrophy we know more about this in men than we do in women. Also sex is important to cancer survivors in the LIVESTRONG 2006 survey of over 2000 cancer survivor nationally, they had this somewhat young sample with the mean age around 55, but sexual function was the third rank physical concern reported by 46 percent of respondents. And although they didn't ask whether they had actually gotten help for sexual problems, 2/3s of the sample reported that if they worried about physical appearance, they didn't receive any help. And about 3 quarters said if they have concerns about personal relationships, they had not received any help.
More recently, the cancer support community has a Breast Cancer registry where they're recruiting nationally. And in their first survey, and it is largely a Caucasian, middle class sample about 6 years after diagnosis. Sex was one of the top sources of distress again reporting by 21 percent of women, 22 percent rated fatigue, 18 percent rated sleep disturbance and 18 percent rated weight gain as top concerns. And also distress about sex co varied with depression, we don't know what's the chicken and what's the egg, but people who have sexual problems are depressed. Here at MD Anderson several years ago, we did a needs assessment survey to see if it was important to have reproductive health services here and although our return rate was pretty low, we did manage to get over a 100 men and women to respond to a pretty detailed survey. And typical of people who are concerned about this, 40 percent of the men had prostate cancer and about a 3rd of the women had breast cancer and the men were somewhat older than the women and more likely to be in their 50's. Whereas the women were predominantly in their 40's. And more women than men had chemotherapy which may be because in women chemotherapy causing premature ovarian failure for younger women is a major source of sexual problems. And these were also pretty, you know, medium term survivors 3 to 4 years out. And more women than men were married, I mean more men than women were married. And we asked them if they'd been sexually active before their cancer versus not. It was a retrospective cross-sectional survey and we found about an equal number of men and women had discontinued sex after their cancer around 20 percent or so. We also found that younger people were more likely to be currently sexually active, no big surprise. And no difference by gender, but we found that when we looked at the reasons why people stop sex, there was big gender difference and this is very familiar from the other literature on sexuality in general outside of cancer as women age, we have more trouble finding partners. But if you look at why older couples stop having sex, it's usually the man's choice. If the man has erection problems or is in ill health that's why couples usually stop having sex more commonly than because of the woman's issues. One thing--I think that's interesting in these data is we often talk a lot about body image and the influence of that on sexual problems but actually a relatively small percentage of men and women didn't feel sexually attractive compared to the number who reported physiologically based sexual problems. We also asked if they would seek help and basically half of men, 40 percent of women said that they would consider utilizing a reproductive health clinic in the next year if we had one. And about a quarter or 20 percent said they'd definitely make an appointment. And that didn't differ by their living distance from MD Anderson, but if they knew they would have to pay out of pocket which is often true for mental health services at least. Many fewer people said that they would go ahead and get those services. And when we look at global surveys, it just seems to come up over and over again that for adults in general, about 20 percent of those with sexual problems ever seek help for them. Now, most of the problems we see in cancer survivors are related to damage from their cancer treatment. So, for men, they may have pelvic surgery that damages the autonomic nerves that send blood flow into the penis to create an erection or they may have decrease in blood flow from pelvic radiation doing damage to the blood vessels and nerves. And in women also, pelvic radiation can directly damage the vagina as well as causing the ovaries to fail in younger women so that they go into a premature and abrupt menopause. And also anything in women that causes ovarian failure whether it's removing both ovaries or a high dose of chemotherapy puts women at high risk for problems like pain with intercourse, vaginal dryness and loss of desire.
In men, we also have the large group of men who go on hormone therapy for advanced prostate cancer that interferes with desire as well as erections. And now, in women, we're seeing a lot of really severe dysfunction in women who go on aromatase inhibitors because of the lack of estrogen and the peripheral tissues causing really severe vaginal dryness and atrophy. And those who get very intense of chemotherapy, men may end up hypogonadal, it may cause some neurologic damage and graft versus host disease can be a major problem for women causing vaginal scarring and there's a--at least a small group of men who also get penile irritation as part of those symptoms. Now, sexuality and fertility, I've watched these two fields over the last 30 years and it strikes me as ironic that when it comes to sex after cancer, we have--why are you asking me about sex? You should be glad you're alive or nurses saying I'm sorry but your boyfriend needs to get off your bed. There's a lot of kind of --oh, this is really not important where when it comes to oncofertility, this is the burgeoning new field and its, you know, its cancer, motherhood and apple pie-- cancer patients having babies and the resistance is so much less to trying to get services for fertility preservation than it is for sexual counseling that you can't help but notice the difference in the progression of the fields and the literature and in clinical services.
Now, of course we know that for our younger survivors, infertility is very important to quality of life. And in fact, surveys show that cancer survivors put increased value on family ties and intimate relationships typically after their illness. And about 3 quarters of young adult patients who are childless that their cancer diagnosis say that they would like to have children in the future and in one survey, 80 percent teen girls wanted children. And we know too that if the risks of infertility aren't discussed, survivors can have prolonged anger and grief. Now, unfortunately, the options to preserve fertility either are involved freezing reproductive tissue or gametes before cancer treatment or modifying cancer treatment. So we don't have a time machine, you have to make these decisions at a very stressful time often with very little time to consider, and that's where I think the counseling part becomes very important. And I think the real decision for women certainly is whether to preserve fertility at all. Should a woman risk the chance that she'll recover fertility after cancer, will she be young enough to still use the window of fertility that she's likely to have because women may resume or continue their menstrual cycles after chemotherapy for example but they're likely to go into a premature menopause in a much earlier age than unusual. And a big problem, the elephant in the living room, is the finances because doing a cycle of fertility preservation costs probably a good 11,000 or 12,000 dollars and is not supported by insurers. Even in states that mandate IVF, the conditions you have to meet aren't met for women who need fertility preservation. So, some women get cost covered when their oncologists writes an appeal letter, but many women would have to pay out of their pocket which means that only upper middle class women are very likely to be able to do this. Also we got much better at freezing oocytes that are unfertilized than we use to. It's almost as good as freezing embryos. Embryos still have an edge but the woman has to think that if she is married or in a relationship, what's the future likely to be. Because if she freezes embryos, her partner has the ability in almost all IVF clinics to withdraw his permission in the future for her to use them. So if she's in a shaky relationship, she might be better off freezing eggs. So, women who try fertility preservation are really a small minority of those who are eligible.
Also there have been a number of surveys in the last few years on young adults or pediatric cancer patients and what they recall being told about fertility and the basic bottom-line is that a third to a half of people don't recall being told that cancer treatment could damage their ability to become a parent. And in 2006, ASCO developed clinical guidelines that say basically that if a cancer treatment is like to cause infertility then part of informed consent should be, you know, highlighting that in giving patients referrals for whatever kinds of options to preserve fertility they may have. But, more recently it seems that less than half of oncologists treating adults at least for women are referring them routinely for fertility preservation. And for pediatric oncologist although about half of them do pretty well with teenage boys with sperm banking only 12 percent are referring girls for any kind of fertility preservation most of the time. So why is it that these referrals don't get made? Well, one issue is that there is such a lack of time in a busy clinic and I certainly empathize with oncologists who have more and more complex issues to explain to new patients in less and less time. And we don't do training in these areas. They may not know where to refer patients even for sperm banking let alone for female fertility preservation. And although oncologists, most surveys say that they're comfortable discussing these materials, we find that they cherry pick so they're less likely to mention fertility to someone if they think he or she can't afford it, if they have a poor prognosis, or if they need emergent treatment although that's really a fairly small group of people who couldn't wait a few days or a couple of weeks to start their treatment. Or if the patient is gay or even worse if they're HIV positive. And consistently we find that patients need to bring up the topic themselves and even then they're often dissatisfied with the information they receive. And of course it's mostly our well educated upper middle class patients who know enough to even bring up the topic.
We also know that in the US, fewer men bank sperm than in countries like Norway or Japan or France where it is part of their national one pair health care system. And although one difference maybe that here, men have an out of pocket cost. In our surveys we found that only 7 percent of men who didn't bank sperm said that cost was the barrier, but 25 percent said that they didn't get the information they needed in time so we could certainly be doing a better job with that. Also, when you don't know what these treatments entail, you may have a lot more conflict about what's the right decision and that was shown in an Australian study with premenopausal breath cancer patients that those who had less knowledge about the options to preserve fertility had more decisional conflict and we found the same thing with a pilot study of a patient, the education tool called banking on fatherhood that we created. Those patients who viewed it before making a decision about whether to bank sperm have less conflict about their decision and more satisfaction a couple weeks later.
I think often patients over, over value in a way some of these fertility preservation techniques because they didn't get a chance to do them. But, you know, for a woman whose weighing, you know, what she has to do to save her life to also try to weigh her biological clock and her fertility issues at the same time is, you know, very, very difficult. And I had mentioned that many women have maybe a few years to take advantage of their period of fertility and their fertility will start to decline instead of around aged 35 or 37 as for women who don't have cancer treatment maybe in their mid 20's or late 20's. Now, this year I've started to feel very old and I started thinking because it has been basically 30 years since I first came to MD Anderson fresh from a post doc in sex therapy research with 1 intervening year at Baylor in the sleep lab and I came here, you know, really ready to apply all the things I had learned as a psychologist in this cancer environment and I learned some quick lessons. And the first one I call no porno at MD Anderson because at our sex therapy clinic in New York we used educational explicit videos. You know, they weren't meant to be erotic but they did show couples actually having some sexual activity. So my first week on the job I saw a guy who had a radical cystectomy and his wife and I thought, well, I want them to do some of these couple touching exercises that are illustrated on the video so like we use to do in Stony Brook I--you know, maybe I'll show them the video.
So I asked them if that was okay and explained it would be explicit, I stayed up with them in the room, I asked them afterwards if they had any feelings about it, and everything seemed fine and dandy, and 20 minutes later, I got an emergency call from Dr. Von Eschenbach asking why I was showing porno to MD Anderson patients? So I decided that my videos were going back in the cabinet, I also found out that people in those days, we had patients here for 3 days in the hospital before a major surgery, so you know that was a long time ago and I would go and get to know the patients in their hospital room and talk with them and their partner about, you know, what might happen in their sex life and follow them prospectively all without billing or any of those other worries. And I quickly learned that, you know, when I introduced myself as a psychologist or a sex therapist, I would get this look of horror, I didn't asked to see you, so I learned how to introduce myself, "Hi, I'm one of the team hear in Urology and here at Anderson we want you to know you are not a number, you're not just a bladder or a prostate, you're a whole person. So I am a psychologist but I'm not here because anyone thought you were crazy, I see everybody who's going to have this surgery. and I wanted to get to know you, how you found out about your cancer, how you're coping, how your relationship's doing and by the way, I also might talk with you as part of this about how your surgery could affect your sex life" and I found that that was very successful, nobody wanted to say, "Yes, I am a number so I don't want to see a psychologist" so that worked. I also discovered that seriously patients are really grateful somebody cares enough to ask about these things. And in survey after survey around the world, medical patients say they want their healthcare professionals to ask about sexual and fertility problems. And survey after survey suggests there's only 20 percent of people with sexual problems seek help if they're left to their own devices. Also, I have a hard time recalling a patient being offended other than the couple I mentioned with the porno issue, although some may say sex isn't an issue for me anymore and just not want more information.
So 30 years later, you know, we have the ASCO guidelines, we have a practice guideline here at MD Anderson for our clinicians about asking, informing patients about potential fertility, but we still don't have a practice guideline about informing patients about sexual dysfunction that may occur after their cancer treatment. And so I wanted a picture that showed the 30 years of wear and tear, so the first one is when I'm in New York, here I am in California with my cousin, and you know, things have changed somewhat, but not as much as I would have hoped. This line when you're diagnosed with cancer, sex it the last thing on your mind, I've discovered over the years, this is the preferred beginning for every patient education brochure. And I recently said, "Hey, wait a minute here" because for many patients, especially those who have pelvic tumors, preserving sexual function or fertility, may be a factor in whether they'll accept a treatment and certainly a high priority in their choice of treatment if they have a choice, and I've seen a number of patients over the years refuse optimal treatment because of these concerns. So as I said to our patient education writers, you know, "What message are we giving these men and women about their priorities if we tell them that everybody, you know, for everybody, it's the last thing on their mind."
So how do we talk about sex and fertility in a cancer center? I think one thing we did was shoot ourselves in the foot in medical school education about sex because in the 70's, we had the sexual attitude reassessment model which was basically these seminars and some medical schools made all their students go and some made it optional. But, you know, you would have panels of people with unusual sexual orientations and preferences or very explicit films like the one I always remember was the Kinsey film of elephants mating which is really bizarre. And somehow we were suppose to liberalize student's attitudes, but I think, you know, in backlash to that, now in medical schools, and even in specialty residencies like many Urology or GYN programs, students get at most several hours of classes on sex and health, so they're not well prepared to talk about these topics. And we need to have a better way of combining--yes, the emotional parts of the experience, but also the didactic information which is a--an important part sexual health is--is an important part of general health.
Who should provide this counseling? Well, I think that in many clinics, physicians, you know, just do not have the time to be a sexual counselor and I certainly don't expect that. What I do think is important is that a physician bring up the issue of sex or fertility because the physician's endorsement is very powerful when it comes to decisions about sperm banking or seeing somebody to talk about a sexual problem. But it's the allied health professionals on the front lines who really provide most of the counseling. And as a psychologist I'm a little bit chauvinistic that I--I like to have somebody who has all the experience in doing this. But that's also an expensive proposition. So, I'm hesitating a little because this--this is not the latest version of my slides and I don't know quite how this happened. So, I hope that it will have some of the slides in it that I put in. So, I apologize for my disorganization. But I think that--that what we really need is in each site specific clinic to have allied health professionals who are trained to know what are the sexual infertility side effects and options for their cancer site and the types of treatment that they do. And that often might be a nurse clinician or a physician's assistant or an oncology social worker and who can take the time to sit down often in the context I think about in general the evaluation of quality of life issues and talk about these things, and then we need a specialist who we refer to. I also think we--we put so much attention on fertility preservation and we don't talk very much about the thousands and thousands of cancer survivors who wanted to have a child at that a time of their cancer diagnosis and weren't able to do so and are left several years afterwards trying to make a decision about whether to consider adoption or donor sperm or eggs or a surrogate or living without children and--and who could really use our help. And we can assess their current fertility, we can do a better job of that now for women with ovarian imaging and a hormone called anti malarian hormone that reflects how many eggs are left in the ovary, for men we can always do a semen analysis. And also look at things like pregnancy risks and whether they have a chance of responding to infertility treatment. And I think we can also counsel partners together whenever possible to encourage them to stay sexually active or if they are single to go out there and date and give them some ideas on that. So, they feel like it's not such a terrible risk. And to emphasize that they can maintain intimacy and pleasure and it's not only an issue of sexual performance. And I think we need to educate them about the potential preventive benefits of actually getting sexually aroused periodically, that may actually help maintain vaginal lubrication and size and for men the ability to recover the fullest erections. And, you know, some people have myths about sex and cancer like they may believe that--that that cancer is contagious through sexual activity or that having sex makes cancer grow. And even though they may only think about those and--and they may be embarrassed to ask about them, if someone really believes some of those things that may really totally stop them from resuming sex.
So, I think it's important to encourage couples to prioritize their time to be together and discuss the importance of expressing physical affection apart from sex which is something that often gets lost especially when it is the man who has a sexual problem and he doesn't initiate sex. And in older couples sometimes the female partner isn't comfortable initiating sex and suggest, you know, brief interludes of sexual activity and ways to resume sex in a way that is not so pressured. And use of what we call the old sensate focus exercises in sex therapy which are basically couples touching exercises where they are limits on what kind of touching you do and each partner has, you know, 20 or 30 minutes just to lie back and focus on their own sensations while the other person touches them to get back in tune with their sexual feelings.
Because after you've been through the dehumanizing experience of cancer treatment, it can be difficult to get back to feeling like your body is an instrument of pleasure and not just hanging. We can also help patients to overcome symptoms, we can if they're having chronic pain we can give them some ideas on when to try love making and that means you can't always just be spontaneous and wait for the bolt from the blue to strike you especially the bolt may not strike anymore. And couples sometimes have special needs like amputations or ostomies or indwelling lines and they're often the people who take care of those issues like the enterostomal therapy nurses or the physical therapists who have some good suggestions on how to get around some of those things when they're having love making. But what I--what I had wanted to talk about and I had whole series of examples was some of the principles of how we actually talk to cancer patients about sex and fertility and there are some guidelines that I think are fairly easy to remember, and I apologize for not having the visual prompts to go with this, that really make that task easier and I remember a number of years ago when I was at the Cleveland Clinic I was giving a lecture to our psychiatry residents and talking to them about talking to patients about sex. And all of a sudden one of them raised their hand and said, "Doctor, Schover how do you talk about this stuff without blushing?" And it really took me aback because I guess it had been so many years since I was at that stage and also I thought that psychiatry residents would be really with it and wouldn't have those concerns. But I think, you know, practicing is very important and sometimes it really may help to role play with a colleague or with a friend or your partner at home and take some of these situations that might be really difficult.
But what are some of these general principles? Well the first one is start out with the least controversial material. So, for example, if you had a woman who had had a GYN cancer and you're examining her, you might say, "Now, since you had your radiation therapy I'm wondering if you've noticed any changes in your ability to enjoy sexual intercourse." And so she might say, "Well yes, I have noticed some vaginal dryness, is that part of, you know, the side effects from my treatment?" And then that leads to a discussion. What you wouldn't want to do is-- is say, "Oh gee, you know, since you had your--your vaginal surgery and, you know, you won't have really much of a vagina left here, what are you doing? Are you and your husband having anal intercourse or something?" And then she might say, "Well, why you asking me that? You know, my husband has diabetes and we are not even sexually active anymore." So, you know, you don't want to start out with something that people might find sensitive you want to have a relationship with the patient and start out with something that is going to be, you know, relatively non controversial.
On the other hand, you don't want to ask closed ended questions like, "Are you sexually active? Because if the patient says, "Yes" then you end up asking another question. "Well, you know, who are you sexually active with?" So, the more you can ask open-ended questions the better off you are, like "Tell me a little bit about your current sexual relationships." And that can be really important also, you know, talking with patients from different cultural groups or sub-cultures within the United States. Most people who are from a more traditional culture are going to have more conservative values about sex. So, you need to normalize and let them know that--that, you know, you respect their views. So, if you ask an open ended question in that situation, you're more likely to get more information. I remember once years ago I had a patient's chart and he was from Saudi Arabia and he had 2 wives currently, and I expected him to come by himself but he came with one of his wives and I couldn't ask him. I didn't feel comfortable saying, "And which wife is this? Is this the new one or the one that you're having conflict with according to your chart?" So I--you know, asked them, "Well, tell me a little bit about your relationship. How long have you been together?" And by the answers I was able to figure out what was going on.
Also it's important to normalize. For example, if you ask a man especially some men who come from a more conservative or traditional background, you might need to know if they are having erection problems whether their erections are better in some situations that are more stress free than others. So, erections with--when you're trying to please a partner might not be as good as erections when you're watching an erotic video on the internet or masturbating. But if you say, "Well tell me. Do you masturbate?" Number one, that's one of those close-ended questions and a lot of men are just going to say, "No" if their culture says it's shameful. But if you can say something I've worked out this little thing I do, that helps , you know, when men are having one of these problems, sometimes they might try touching their own penis when they're in the shower just to see what would happen, you know, if they might, you know, get a response. Have you tried anything like that? And then a lot of men will say, "Oh yeah, I've tried that." You now, and then you can say, well, you know, how was that erection compared to what happens when you're with a partner? So the more you can give people the idea that whatever they tell you, you're not going to judge them, that's important. Or if you have a gay male patient you might say something like, you know, gay men have so many different sexual patterns in their relationships and some just like to take one particular role during sexual activity like being the top or the bottom and others are much more varied. So tell me a little bit about what are common sexual things that you would do with a partner in your relationship? So you've conveyed that you know a little something and that whatever they tell you, you are not likely to condemn them for it. So that's very important, you know. We have many gay men or women patients who come to a medical setting and don't disclose their sexual orientation and we just assume in our language. We use language that assumes that they are heterosexual. So early in taking some kind of a sexual assessment or history, it may be important to say, "Well, tell me about--you know, your sexual attractions and partners. Are your partners usually men or women or either one?" And we also certainly see many patients who even if they are officially married, also have other partners. And we also stereotype. So, if you see an 80-year old lady with breast cancer, someone might not know that she might be interested in having a breast reconstruction but she might be very interested in that. You know, 80 is the--you know, the new 60 now. So that's important or I've seen a number of men who were over 50 who didn't bank sperm because nobody mentioned to them that their cancer treatment might cause infertility but they have a wife who's 32 and she wants to have kids and now it's too late.
So, you know, these kinds of things we have to be aware of some of our biases. And so when you think about things like role playing, you may want to--you may want to, you know, think of some situations that might be difficult like, you know, what would you say to a 14-year old boy who wants to bank sperm? What kind of preparation would you give to him for going to the sperm bank or trying to give a semen sample? And one thing we know is, don't send his parents with him because if they're in the lobby that's the worst prognostic factor for his being able to ejaculate and produce a semen sample. And you know I think it's often very important with adolescent patients to try to talk with them separately from their parents and maybe talk with the parents separately and then get them all together so that everybody is on one page but not to expect them to divulge things like, whether they have wet dreams yet, or what kind of sexual activity they've experienced in front of their mom or dad. And of course that takes more time. So this can be, you know, like many of the specialties in oncology, a very time consuming thing to do. Another thing that's different about oncology settings is that we often have one shot at our patients, they come from far away, they may be coming here for a second opinion rather than for their full cancer treatment or they may be coming here to get a chemotherapy regimen set up and then returning to their home community.
So we may be able to follow them by phone or by email but, you know, we often may not have an opportunity or at least very few opportunities based far and wide between to follow up. And when I was aback at Stony Brook, we thought that a course of sex therapy was getting the couple in once a week for 15 weeks and now I, I laugh bitterly when I think about that because I'm lucky if I can get people to come in for three in person sessions. And if we are doing research and pay for their parking, that's still a problem getting them to come to MD Anderson. So we have to cram all this information into a short session when people are often very anxious and can't even take in what we're telling them and that's why I've been working on things like internet bay store, pure counseling based interventions to try to find a cause effective way of having more follow up care.
Maybe I'll finish with one anecdote, that's one of my favorites so some of you may have heard this before but many years ago when I was here the first time, I had a lady in her early 70's who had radical cystectomy for bladder cancer. And I met with her and her husband, they have a lovely marriage for over 40 years and they--I met with them in her hospital room before surgery and explained all that was going to happen that her vagina was going to be somewhat reduced in size but then if we--you know, helped her with some estrogen and--and some gradual introduction to penetration again, she hopefully would be able to still have pain free intercourse. And I--I used 3 dimensional model to illustrate exactly what was going to be taken out and how things were going to be repaired, and they were very happy to talk with me, I talked with them again while she was still in the hospital, they went home, came back for their first follow up and I said "Gee, how are things going?" They said, "You know, we're kissing and touching and bringing each other to orgasm" but she said, "You know, I'm really afraid to have intercourse because I'm afraid my vagina will split open if I do." And I said, "Oh, you know, we talked about that before, let me explain again." That I got out the model again and explained that everything was all healed and that, you know, she might possibly have some tightness or pain but if she was patient and they--you know, kept on working with it we could give her dilators if she needed it that, you know, she should be able to have intercourse again. So they went home and they didn't come back for another 3 months and when they came back, I said, "How are things going?" And she said, "You know, we're kissing and touching and having orgasms, everything is great but I'm afraid my vagina will split open if I--if I, you know, have sex." So I went over the whole, you know, 9 yards again. And I said, you know, I'm not waiting for you to come back in another 3 or 6 months, I'm going to call you in 4 weeks and I'm going to ask you if you've done any of these things that I've suggested to you and how things are going. So I called them and she got on the phone and I said, "You know, how are things going?" and she said very indignantly, "We're having intercourse with no problem, why didn't you tell me any of this before?" So, you know, I think a lot of it is what patients are ready hear, you know, what their stress level is and--and don't think because you said it once you don't have to repeat it, and that's what, you know, is great about doing things like behavioral homework where we can find out what patients actually did and what went right, what went wrong and then help them from there in that kind of approach is very helpful and often very helpful in getting patients to manage some of the medical treatments that we have for them. So let me stop there and again, I apologize about the slides.
>> So we--we have time for a few questions, I just like to say it was very nice to hear your lecture that I may be a member of--of the of the new 50's group, you know.
[ Laughter ]
>> You're not 80 yet, are you?
>> No, so let me ask a question, one of the things that I wonder about is the role of assessment of patients with questionnaires because, you know, not only the sort of lack of familiarity of our clinicians is how and what to ask patients about sexuality but the fact that patients could self report and save us some time in giving us some data ahead of time. And I wonder whether or not there is any sort of research going or any recommendations you might have about screening patients who may be at high risk for sexual dysfunction with questionnaires.
>> Well we--we use them all the time in our research and I know Elise Cook in breast cancer prevention was trying to put together a little study to see, you know, are there two or three easy questions we could ask. The trouble with the paper and pencil instrument is that if the patient is embarrassed they often skip those questions and the people who are suppose to be reading and talking to patients about it, also often skip the questions. So I had a--a very lovely, young Hispanic breast cancer patient a couple of years ago and in the breast center they apparently have a question that's meant for the oncologist where there's a bunch of problem areas and if you check them you're supposed to be asked about them. And she said, you know, every time I went to that clinic for all these months I checked that I have a sexual problem and no one ever asked me about it. So that's the danger of the questionnaire is, you know, is it going to really lead to somebody really addressing it, you know, sure questionnaires are quick and easy way of screening but the screening has to be followed through.
>> Thank you.
[ Inaudible Remarks ]
>> Can you say who you are, and--
>> I'm Danny Epner and I'm a general oncologist and I work with Dr. Baile on several communication skills programs and seminars. But I really liked how you described really key things about open-endedness and establishing rapport and you mentioned normalization. But one question came to mind was, sometimes when I talk about sensitive topics like end of life topics, I'll kind of introduce the topic by asking permission essentially, I'll say something like depending on the situation, I might say, you know, I want to talk about something that's really a serious topic now and is that okay if we talk about something we call--let's say code status or something like that. And in essence I'll ask permission first and I wonder if that's a good idea or a bad idea --what are the advantages or disadvantages of sort of introducing sexuality by asking permission, would it be okay if we talk about this?
>> I think you would probably be a good idea although I never thought about it before with someone where you suspect they're going to be uncomfortable talking about it, and I think that maybe, you know, very elderly patient, somebody from, you know, a different country where your working with the translators or something or, you know it's--I think is a lot easier to talk about sex than it is to talk about death actually [laughs], you know, so, but--but that's a good point and that's another problem by the way I've had many sessions with patients working with translators and if the translator is uncomfortable with what you're talking about, they may not translate. And I don't care for if it's a Turkish, I know that if I said 5 sentences and they say 3 words, they have not translated [laughs] what I said. You know, so--or sometimes you get side--side bars from the translator like, you know, "Oh, of course he has mistresses, they all do." You know, and it is very uncomfortable, you know, to try to do that, so that's another complicating factor.
>> Anyone else? [Inaudible Remark]
>> Ask him a question.
>> If--so if you, so many folks here I suspect might find themselves in a position of wanting to ask a patient about their sex life, because you rarely see if, you know, I must've--I've been here 17 years and I must have read about 20,000 histories of people and never ever have I seen, you know, head neck gastrointestinal, never did--it never says sexual activity or sexual functioning. So I wonder if you--what to recommend like 1 or 2 phrases that folks might at least begin to ask a patient or a couple about sexual functioning, what might you recommend.
>> I might recommend saying, you know, one important part of your quality of life is your sexual function and I--you know, many people have this type of cancer end up with some problems and wondering if you've noticed any changes.
So, you know, there are easy ways to do it and that's sad and, you know, we interviewed 50 men recently for a qualitative part of a study that we are doing all different ages, cancer sites and my behavioral research coordinators is a very good interviewer, and he said that most the men commented, "You know, this is the first time anyone ever asked me about this." And they were sending him thank you emails and phone calls and he did not offer any counseling, he was just talking to them about their experience.
>> Other questions? Okay, I wonder whether or not, whether folks wanted would like to have a copy of your original slide set that--
>> I'd be glad to do that.
>> They might--they might write to you so it's--its L Shover...
>> Its firstname.lastname@example.org and I can also give them to you Walter the post on the website if you want.
>> Yeah, and might you be available to like field a phone call from someone who had a question?
>> Clinical question about how you might approach this sexual issue with the patient. Okay, well let's give a round of applause to Dr. Schover, thank you very much.
[ Applause ]
©2012 The University of Texas MD Anderson Cancer Center
1515 Holcombe Blvd, Houston, TX 77030
800-392-1611 (USA) / 713-792-6161