Chapter 04: Acceptance of Sex Therapy in Oncology and at MD Anderson
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Description
In this chapter, Dr. Schover discusses the acceptance of sex therapy in oncology nationally and at MD Anderson. She begins by noting that in the 80s, sex therapy was seen as the latest thing, but it was not applied to chronic illnesses. In oncology at the time, only a few clinicians felt that addressing quality of life was a primary concern, although research showed that 60% of people with cancer end up with severe sexual problems that influence their quality of life. Dr. Schover sketches the types of problems that arise.
Next, she explains how faculty members helped her come up to speed on oncology treatments, providing her with insight into the patients’ experience of cancer. She also talks about working with patients, her passion for educating them about choices.
Next, Dr. Schover discusses why clinicians do not address sexuality in their work with patients and, on the other side, why patients don’t raise the issue with their oncology team.
Identifier
SchoverL_01_20180918_C04
Publication Date
9-18-2018
City
Houston, Texas
Interview Session
T.A. Rosolowski, PhD, Oral History Interview, September 18, 2018
Topics Covered
The Interview Subject's Story - Overview; Overview; Definitions, Explanations, Translations; The Researcher; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care; Cultural/Social Influences; MD Anderson Culture; Mentoring; On Mentoring; Survivors, Survivorship; Patients, Treatment, Survivors; Professional Practice; The Professional at Work; Mentoring; On Mentoring
Transcript
T.A. Rosolowski, PhD:
Well, and that brings up a really interesting and important question about the whole status of sex therapy in these early years. What was the situation nationally, in terms of acceptance, and how was it similar or different here in Houston, here at MD Anderson?
Leslie Schover, PhD:
Well I think nationally, because it was still --Masters and Johnson had published their sex therapy book in around 1970, so it was considered kind of a cool new treatment, but people were not applying it very much to chronic illness. There were a few other people besides me who were doing that kind of work, but it was something new. Also, people like Andy von Eschenbach were very aware that these were very hurtful problems to patients, that caused a lot of suffering and affected their quality of life. So there were probably the majority of oncologists, and I think it’s probably still true today, who say “I’m here to cure cancer and quality of life is secondary, if you’re dead you have no quality of life.” But there are a lot of other more empathic or forward thinking oncologists and other professionals involved in oncology who say, “Well gee, you know, this is a valid area of quality of life and it’s something that we should be paying more attention to.” I think now it’s quite clear that maybe 60 percent of people with cancer end up with long-term severe sexual problems. But a lot of oncologists even now aren’t that aware of it. In fact, ASCO [American Society of Medical Oncology] and NCCN [National Comprehensive Cancer Network] just published guidelines, in December of 2017, saying that every cancer patient should be asked about sexuality during treatment planning and periodically at follow-up, and if you identify a concern or problem, it should be assessed and they should be offered multidisciplinary treatment. It’s taken us this long to get that guideline, whereas the Oncofertility Guideline was first published in 2006.
T.A. Rosolowski, PhD:
Which even for that is very amazingly late.
Leslie Schover, PhD:
Yeah.
T.A. Rosolowski, PhD:
Yeah. Well, I’m actually staggered by that number. I had no idea that 60 percent was the figure. So what kinds—you know, where do these sources of problems come from and what kinds of problems do you see?
Leslie Schover, PhD:
Well, they’re mostly triggered by physical damage to the systems that you need to have intact to function sexually, so the hormonal system, the nerves that either carry sensation or send blood flow to the genital area and the blood vessels themselves, all of which can be damaged by different kinds of cancer treatments. And then the problem is also, that there’s also the emotional side of things, you know body image changes and disruptions in relationships, and whether someone manages to stay sexually active or try some of the treatments that might compensate for some of the damage depends a lot on their individual… [ ] It depends on their motivation to stay sexually active, and also on the quality of their relationship, how open communication is and whether their partner is interested in still staying sexually active, especially since the average age of cancer diagnosis is 64. So you know, a lot of patients may have given up on sexuality because of other illnesses or relationship issues, long before they were diagnosed with cancer.
T.A. Rosolowski, PhD:
So, tell me more. Kind of take me back to that time when you first started at the institution and tell me first of all how you kind of entered the whole environment here. It was a different era obviously.
Leslie Schover, PhD:
Yeah. Well Andy was very good at trying to get me up to speed, so he did things. The first couple of months I was there, he had me follow him on rounds, and I remember, I rarely felt squeamish of things, but there was one time when he was doing a prostate exam, when I started to feel faint and had to sit down. He also had me watch a woman.
T.A. Rosolowski, PhD:
Yeah, so you were taking me to that moment when you felt faint, during the…
Leslie Schover, PhD:
The prostate exam.
T.A. Rosolowski, PhD:
Yes.
Leslie Schover, PhD:
I’m not sure exactly why, except I think I felt sorry for the patient. And then, Andy wanted me to watch a major cancer operation, so he had me watch a female radical cystectomy of an elderly lady, who I had actually met and talked to a little bit. He kind of sprung it on me. In those days, I still wore not really high heels, but maybe you know, a little bit of a heel, and I’m short, so they put me on a stool, right next to the patient during the surgery, and it was about a four-hour surgery, and I kept thinking oh my God, I’m going to fall, I’m going to fall over, I’m going to fall onto the patient. It wasn’t as instructional as it could have been, because at that stage, I didn’t understand the anatomy very well and I kept thinking by the time they were through, I thought the one thing this really reminds me of is what a turkey looks like when you’re getting ready to stuff it and you’ve taken out all the internal organs. The only part of the surgery that really bothered me a lot was they put in an IV in the women’s—well, it was probably not an IV, but it was some kind of a needle that they put into the women’s wrist, and some blood spurted out, and that made me think this is a real person. Otherwise, I felt like it was kind of like I felt kind of detached.
T.A. Rosolowski, PhD:
Interesting.
Leslie Schover, PhD:
I mean, it gave me an idea of what it’s like to watch surgery, which I’m sure was Andy’s intent.
T.A. Rosolowski, PhD:
Yeah, what did he want you to get from that do you think?
Leslie Schover, PhD:
I think he wanted me to understand the magnitude of what we were doing to people. Because I mean she may have had, I’m not sure if it was a radical cystectomy or maybe even a total pelvic exenteration but so much of what they took out --it’s a big, major, radical surgery, and I think he wanted me to understand that. There was also, the head of Gynecology in those days, and now I’m blocking on his name, he was just a wonderful man, very famous [Felix Rutledge, MD]. He was still the chair of Gynecology.
T.A. Rosolowski, PhD:
It’s something you can add later, when we look at the…
Leslie Schover, PhD:
Yeah. He also taught me a lot, and I remember, we saw a young woman who had had a vaginal reconstruction, and he wanted me to put on a latex glove and examine her vagina and I said, “But psychologists don’t touch patients, we don’t do that,” and he said, “But if you don’t understand the dimensions of what her vagina is like and stuff, how are you going to be able to help her?” So I asked her permission and I did do that, and it was a really strange experience for me because that isn’t something that psychologists normally do. I also worked a lot with the enterostomal therapist, to understand what it was like for people who have urinary ostomies or colostomies, and deal with their ostomy appliances.
T.A. Rosolowski, PhD:
So did you feel that those experiences did make a dramatic change in your ability to understand?
Leslie Schover, PhD:
Oh, I’m sure they did, definitely, because I felt like what I ended up being, in many senses, was a translator for the patients, because since I had to learn everything in lay terms. And since I’m very verbal, I could explain often to them, in ways they would understand, whereas they didn’t understand before. One group that I worked with a lot were women who were having a radical hysterectomy for cervical cancer, and I had a very lifelike model that showed the vulva on the outside and the uterus and ovaries, and bladder and everything on the inside. I would go to their hospital rooms and I’d joke, you know, this is my model, Gertrude, and I’d ask if they’d ever looked at their genital area in the mirror, and most of them hadn’t because it tends to be a less well educated or more rural population often, than the rest of our cancer patients. So you know, we would go over what the different parts were and what happened during sexual arousal and what an orgasm was and what a clitoris was, and what was going to change or not change after they had their surgery. Very often they’d say to me, you know my surgeon showed me a model, which was usually a cross-sectional model, but I never really understood what was going on until you showed me this. I would come back and their mother or sister would be there and they’d go, “Do you have you model with you so you could show her what you showed me?” So, I realized that that was really important, to really make sure that patients understood these changes in their bodies, because they would have an idea that after a hysterectomy, that your vagina was just an open tunnel to the inside of your pelvis that never closed up at the top, for example, or that you no longer—that it would feel totally different to your husband when he had intercourse and that he’d be missing something. You know, all these kinds of false ideas and misconceptions that people had, and so it gave me kind of, I think a passion for educating and making sure that people understood their options and got the right information at the right time, so that they could make choices later on about how important it was or wasn’t to them, to stay sexually active.
T.A. Rosolowski, PhD:
What do you think are the sources of the reluctance or that other MDs show, and other folks in the institution, and nationally, show for discussing these issues? What might be the reluctance, the fear …I mean what’s creating a silence?
Leslie Schover, PhD:
Well there have been a lot of surveys of health professionals in different professions, about talking about sexuality with medical patients, and they’re all the same. It’s almost comical, if you read like six papers in a row, because they could be the same paper. Whatever the profession is, you say, Is it important to talk to patients about sex, and they all go, Yes. And you go, do you routinely talk to patients about sex? No, because if it’s important to the patient, the patient will bring it up, which just isn’t true. Maybe 10 percent of patients are desperate enough to bring up that topic in a medical setting. Then, the other thing that everybody says is, It’s somebody else’s job. So if it’s the doctor, they say well the nurses should be doing it, and the nurses say the doctors should be doing it, and the psychologists say the doctors should be doing it and other people say well, the psychologist should be doing it. It’s just, I call it the hot potato of patient/professional communication, because nobody really wants to touch it. Part of the problem often is they don’t get training in how to manage sexual problems, so if the patient brings up the topic, they aren’t going to know what to say, and doctors hate not having answers. It’s a time-consuming topic, it’s emotional, and so you know, the same thing with fertility. I think with fertility, for the younger patients there’s more of a sense that you’re really doing something wrong if you don’t bring this up, because you could be precluding their chance of having a biological child and you’d better not do that or we’re going to sue you, or you’re a bad doctor. People don’t feel that strongly about sexuality, which affects a lot more cancer patients. So I think it’s a whole combination of things. I think for the hospital --I mean now that I have this company where we’re trying to get hospitals to license our self-help and professional training software, I think the hospitals think, Well if we say our staff should focus on this like the guidelines say, there’s going to be a whole lot of unbillable time wasted in clinics. So, you have to have a system where you can identify a problem quickly and then have somebody who is trained, who can come in and do an appropriate assessment and referral treatment plan. So.
T.A. Rosolowski, PhD:
What are some of the reasons that patients may not bring it up?
Leslie Schover, PhD:
Well, one is embarrassment. Sexuality, even --we talk about it tremendously in the media, but when it comes to our own sex lives, most people are not that self-disclosing and regard it as, well I’m here to get my cancer treated. Do I have a right to even mention that it’s wrecking my sex life or if I do, will my doctor think that I’m crazy or inappropriate or flirting with him, or something like that. And I have so little time to discuss anything with my team, so how can I bring this up. So I think those are—and it’s still kind of stigmatized, especially for older people. For myself, as a 66-year-old woman, of course all my doctors are very careful to ask me about my sex life, because they know they aren’t going to be caught being bad doctors. But normally, you know, unless it’s—I think women often bring it up in the context of oh, I’m so worried about disappointing my husband, he still wants sex, so what can I do, kind of thing. There are still those traditional gender roles.
T.A. Rosolowski, PhD:
Right, right. Now you mentioned that the patient who does bring it up may do it out of desperation. What are some of the desperations that compel people to bring it up?
Leslie Schover, PhD:
Well, I think men are somewhat more likely than women, to really define themselves by their sexual function. So I have seen men in particular, refuse what might be a life-saving treatment, because of the fear that they aren’t going to have erections afterwards, for example, and needing to really sit down with them and say you know, if you’re dead, you’re not going to have erections either., but also, if you do have a problem, there’s a variety of medical treatments that could be used to help you have erections again, and it’s not just a black and white situation like that. I think for men, the two things that cancer takes away that are part of our traditional masculine role are earning power and sexual power. For women, I think attractiveness, as opposed to sheer sexual function, tends to be a more primary issue, although I think younger women have higher expectations nowadays that they should have a right to have sexual pleasure as well.
Recommended Citation
Schover, Leslie PhD and Rosolowski, Tacey A. PhD, "Chapter 04: Acceptance of Sex Therapy in Oncology and at MD Anderson" (2018). Interview Chapters. 1495.
https://openworks.mdanderson.org/mchv_interviewchapters/1495
Conditions Governing Access
Open
