I have spent more than 30 years of my career trying to help cancer patients prevent or overcome sexual problems related to treatment. Although we better understand the causes of those problems, and have a few medical options to restore firm erections, most men still don't get accurate information when they need it.
To try to solve this situation, my research team has been working with a small business grant from the National Cancer Institute (and our small business partner Paul Martinetti, M.D., of Digital Science Technologies L.L.C.), to create a website that will provide education, self-help suggestions and advice on getting the best medical care for men's cancer-related sexual problems.
In creating the website, we interviewed 48 men of varying ages and ethnicities with different types of cancer. We asked them to review drafts of the website and report their experiences.
The first, rather discouraging finding was that many men had never been given a chance to discuss this important part of life after cancer. Some valued the interview so much that they sent emails or called back to personally thank Evan Odensky, the senior behavioral research coordinator on our project.
Another common pattern was that men didn't realize how important a sexual problem could be until they experienced it. When they were planning their cancer treatment, 62% worried just a little or not at all that cancer treatment would damage their sex life.
Preserving sexual function was a major factor in choosing a treatment for only 13%. At the time of the interview, however, 79% of men rated their sexual function as moderately to very important. Furthermore, 44% told us that they had not had accurate expectations about sexual problems after treatment. Men who were treated for prostate, bladder or colorectal cancer in particular often felt they had gotten an overly rosy picture of their likelihood of ending up with normal erections.
Another very important issue was sexual communication. Many men felt guilty or embarrassed because their erections were not firm enough for intercourse, but told us that their wives or partners were not open to trying other types of caressing that could lead to mutual arousal.
Men who were not in a committed relationship often worried about telling a new dating partner about their history with cancer. Fearing rejection, they put off meeting new people. A few men even sought sex with prostitutes because of shame associated with their sexual function.
Participate in the study
After hearing these painful stories, we are eager to finish our website and to try it out later this year in a randomized study. Men who are getting help in our Sexual Medicine Clinic with Run Wang, M.D., in the Genitourinary Care Center will be invited to participate.
One group of men will get the usual, excellent care. Another group will also get access to our website plus phone counseling from Evan. A third group will get all of that and will try out a system in which they report every two weeks on their progress with erections, so the clinic staff can fine-tune their treatment.
As part of building the website, we are looking for men (and some partners) willing to participate in video interviews and share their stories about how cancer affected their sex lives, their feelings about manhood and sexual attractiveness, and their relationships.
We hope to interview men of a wide range of ages, ethnic backgrounds and attitudes. If you might be interested, please contact Evan Odensky by phone at 713-794-4031 or email at firstname.lastname@example.org. Those who are videotaped will be compensated for their time and trouble.