MD Anderson Cancer Center
Lisa Garvin: Welcome to Cancer Newsline, a 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. And today we're going to be talking about a special clinical trial for men who are experiencing sexual dysfunction and other problems as a result of their cancer treatment. It's called "Hard Times: Cancer and Men's Sexual Health." Here to talk about that today is Dr. Leslie Schover. She is a Professor of Behavioral Science here at MD Anderson and research nurse Elaine Schneider. Welcome ladies.
Dr. Leslie Schover: Thank you Lisa.
Lisa Garvin: Let's talk about men and their sexual problems. Typically men are kind of withholding when it comes to talking about sexual problems. Is that correct?
Dr. Leslie Schover: Well, actually I think men are even more likely than women to go see a physician about a sexual problem because they see it as an engineering problem. Just give me my firm erection back, and everything will be OK. And where we have more issues with men is getting them to participate in some counseling and include their partner in the process because without that they may get a mechanical solution, and it just doesn't seem to work a lot of the time as well as they hoped it would.
Lisa Garvin: Now typically what sorts of cancers, obviously genitourinary cancers can have problems because you're dealing with the genital area, but are there other cancers that have effects on erectile function?
Dr. Leslie Schover: Oh yes. Well, you know, it's true that the greatest risk of erection problems comes when you have treatment in the pelvic area. So for prostate, bladder, colorectal cancer, but, you know, men who, for example, get extensive chemotherapy to prepare for stem cell transplant may end up with a period of low testosterone where they lose their sex desire and have erection problems. Or some of the chemotherapies can do some nerve damage. So there, you know, is a risk of sexual problems with almost any kind of cancer.
Lisa Garvin: Now Hard Times is a website. So it's actually something that they can do in the privacy of their own home.
Dr. Leslie Schover: Yes.
Lisa Garvin: Can you talk about it Elaine?
Elaine Schneider: The website is great. It's there for them to use with a special password when they get into our research study. And some of the initial feedback I've gotten from the patients is it's just all the information is right there. If you try to Google information right now on the website, I mean, on the Internet you will get so much different information out there. It's just hard to pull it all together. And I think our website is great. And I think the results of our study is going to uphold that.
Lisa Garvin: So what are the pieces of Hard Times? I know there's like three different arms, but what exactly are they doing when they get online?
Elaine Schneider: They start off, they can look at the videos that we've made which are first person videos which was my first introduction to the website and which really brings home the emotions and the trials and what people are going through. And I think that's a great resource. Then you've got, and Dr. Schover can speak to some of the, go ahead if you want to go more in depth on it.
Dr. Leslie Schover: Well, some of the videos are me interviewing actual patients who agreed to do that, you know, to benefit others. And some are actually vignettes with actors that we created with UT TV who did a fabulous job. And they show kind of the coping issues that people go through. One is a younger man, and one is a younger man. They talk about dating, and they talk about communicating with your partner and the impact on relationships. And I think what is unique about our website is not only is all the information accurate because it was all vetted by MD Anderson faculty, and not everything on the Internet by any means is accurate. But also it has not only the medical things but the counseling things. So it actually has self-help exercises that couples can do together or a man can do if his thoughts are very negative and he wants to kind of motivate himself and change his thinking. And it, you know, really integrates the emotional the physical not just one or the other. And it has a lot of parts for partners. So partners want to help a man improve his sex life and also want their point of view to be part of the equation. Have some place to go.
Lisa Garvin: So there are three, aren't there three different arms? So there's one where they just, explain the three different sections of the trial.
Dr. Leslie Schover: Well, men can be randomized like if there were a three-sided coin or a throw of a three-sided die into one of three arms. And one group of men gets usual care. And that means they get the excellent care that comes in our sexual medicine clinic from Dr. Run Wang who is the urologist that runs the clinic. And most men are there looking for a treatment for their erection problem. And they just fill out questionnaires at baseline and 12 and 24 weeks. And when they finish that they get free access to the website. So they have to wait which we feel bad about, but otherwise we wouldn't be able to compare whether the website adds something to usual care. The other two groups of men have active treatment. And that means they view the website for the first 12 weeks. And every couple of weeks they also get a phone counseling call from Evan Odensky who is our Behavioral Research Coordinator on the project and kind of coaches them through, you know, what did you do on the website. If you tried a homework exercise and it didn't work well, what can we do to help it go better? And the third group in addition to those things gets a special follow through questionnaire to fill out every couple of weeks about the new treatment they're trying. And one thing we've found is that even with the best urological care there's not a lot of frequent follow up. And sometimes men stop using these treatments because they're a hassle, and they're not working right. And instead of going back to the clinic and saying, "Hey, I'm not getting an erection when I inject myself with this medicine," or, you know, "I'm having pain or something." They just kind of disappear into the sunset. So this way we're getting their feedback every couple of weeks. And if a problem is indicated because it's kind of like a problem checklist, Elaine gives them a call to find out what's going on and try to intervene.
Elaine Schneider: And these calls are usually a lot about encouragement and just keep with it. I mean, I have targeted some areas that they needed some help with maybe their technique or whatever. But a lot of it becomes sort of an encouragement thing just to stay with this. And yes this is a new reality in their lives and how they are going to approach their relationship with their partners or whatever, but it's a lot about encouragement and staying power and just keeping with it.
Lisa Garvin: And so you were the one who is fielding these calls as part of the trial?
Elaine Schneider: Yes. Yes.
Lisa Garvin: Do they feel comfortable A talking about it over the phone and B talking about it to a woman?
Elaine Schneider: You know, they do. I think by the time they've gotten to the clinic they are very comfortable. They've got it in their head that, you know, they are going to do this or at least give it a try. And they are, I mean, and oftentimes I'm usually the first person they see in the clinic. And they'll just start telling me, and I'm like, "OK, well hold that thought. Just a minute. Dr. Wang will be coming." And then I usually come back in or the clinic nurse that is standard for the clinic and talk to them about whatever therapy has been prescribed. And their partners, we have a lot coming with their partners. And that's a real satisfying time to work with both of them because they're read when they come. And there's help. And they just need a lot of positive encouragement.
Dr. Leslie Schover: And my experience has been too that, you know, even during the many years that I provided direct counseling, sometimes men were a little bit dismayed when I would come out to the lobby and get them and they realized I was a woman because my name Leslie could be a man also. And they would, "Oh, I have to talk to you?" But, you know, by the end of the time they were very comfortable. And I think it's your own personal comfort in discussing the topic. And some men have said too that they feel less kind of judged or competitive in talking to a woman about a sexual problem because they fear that another man would look down on them.
Lisa Garvin: How many people do you hope to recruit? And how long do you think the trial will be going on?
Dr. Leslie Schover: Well our original goal was to recruit 240 men. And we started our trial rather late, so we basically only have through July of next year. So we're basically recruiting as many as we can get in that time and follow.
Lisa Garvin: So men who are interested, how would they go about getting involved?
Dr. Leslie Schover: We'll that's a little bit difficult because this trial is only recruiting from Dr. Wang's clinic. So if a man has a problem and he makes an appointment to be a patient in Dr. Wang's clinic, about 90% of the men who come to the clinic are eligible for our trial, and we invite them and their partners if they want to participate. So this isn't unfortunately right now an open trial where you can just call MD Anderson and say, "Hey, I want to be on that trial." And Dr. Wang's clinic is busy, so sometimes it takes a while to get an appointment. But he gives excellent medical care. And one thing about these problems is that the great majority of them start because of physical damage from the cancer treatment. And so you can't fix them by counseling alone. You can help sexual communication and help the couple cope better with the problem, but you can't restore erections or make and ejaculation problem better by counseling in this kind of context. So I think that the multi-disciplinary approach is really crucial.
Lisa Garvin: So what do you hope to extrapolate from this Internet-based intervention and counseling? Is it something that you hope to apply more broadly? Or what's the end game?
Dr. Leslie Schover: We've already written another grant that will be under review this February to do a much broader study where we would basically take any man who had a sexual concern and put him in the study with the website. But what we hope is that this website and our similar website for women that we've been working on will be available to the public eventually so that people can use them either on the self-help basis or in the context of counseling with a mental health or medical professional. And these grants for both websites were supported by what they call small business grants from the National Cancer Institute. And that means that we actually can't just give them away for free because these grants are meant to support small businesses. So if you do that, the National Cancer Institute says, "You are using these grants just to do research." And Congress looks over their shoulder and says, "These grants are supposed to help small businesses." But the nice thing is because the government has given us so much funding we should be able to get these out to the public in a very nominal fee or sometimes you can get a pharma company to sponsor the licensing for a site like this and give it away for free and still get the small business, you know, some financial gain through that. So it's kind of like creating a new drug in a way. It has a commercialization aspect to it.
Lisa Garvin: So I guess the hope is for people to, for men, to go online, and it's a little bit of self-help. But is it a way to get more men to address their problems? I mean, is that what it's about?
Dr. Leslie Schover: Right. Right. And there is a resource for them out there. That's the goal.
Lisa Garvin: I know that we found out particularly with smoking but also with, you know, sexual problems that it is not just about the pill or the drug or the pump. Is that something, is that message still not getting across to people who are seeking help?
Dr. Leslie Schover: Definitely. As I said, men tend to be very technically oriented. Just fix the physical problem and everything will be OK. And we know now from many years of research that that is often not true. That you need to look at the emotions and the relationship or the dating issues as well as fixing the physical problem and the sexual communication issues. So our hope is that these websites will be out there as a self-help resource that will give people exercises to do, the information that they need to understand their cancer and their sex lives, and also guide them in finding good medical help because it's not always, there's not always a Dr. Wang around who really understands these problems. And it can be very frustrating sometimes dealing with physicians who really aren't familiar with the sexual effects of cancer.
Lisa Garvin: So, in closing, obviously this won't be available to the general public for a little while, in the meantime what is your advice, and I'm asking this of both of you, to men who are having problems?
Dr. Leslie Schover: Well, I guess my advice would be, you know, definitely it is worthwhile seeing a urologist especially one who is familiar with treating erection problems and other sexual problems related to cancer. But along with that it's really nice if you can find someone who also works with a psychologist or other mental health professional and bring your partner into the whole process. Don't leave her out of it if you are in a committed relationship.
Lisa Garvin: Elaine, any final words?
Elaine Schneider: No, I kind of a agree with Dr. Schover. But one of the reoccurring themes I've heard from patients is they kind of wonder why they should be wanting this more in their life after they've survived cancer or whatever. And it really is a reoccurring theme, and we try to let them know, "Yes, you know, there is more to your life. You survived cancer. And you can have a sexual, intimate relationship once again." So we try to offer that kind of encouragement and hope to them.
Lisa Garvin: Great. Men who are having problems related to cancer treatment, I hope you're listening. So thank you both for being with us today.
Dr. Leslie Schover: Well, thank you for highlighting our study and the work that we're doing.
Lisa Garvin: Best of luck to you all. If you have questions about anything you've heard today on Cancer Newsline contact Ask MD Anderson at 1-877-MDA-6789 or online at MDAnderson.org/ask. [Background Music] Thank you for listening to this episode of Cancer Newsline. Tune in for the next podcast in our series.
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