Many patients with cancer and cancer survivors, as well as oncology professionals, do not realize that more than 60% of people who are being treated for cancer end up with long-term sexual problems, such as loss of sexual desire, vaginal dryness, and pain during sex for women, or erection problems for men, resulting in difficulty having sexual pleasure.
Similarly, about half of the patients diagnosed with cancer at a young age will face damaged fertility; however, less than 20% of these people seek help from a health professional for these issues. When they do ask for help, they have trouble finding appropriate experts who know enough how best to help with these problems.
It is, therefore, not surprising that sexual problems rank among the top 5 unmet needs for cancer survivors in many surveys.
Sexuality After Breast Cancer
At age 62, Beth found out she had hormone-positive, early-stage breast cancer. She was successfully treated with a partial mastectomy (removal of the breast tumor and some surrounding tissue) and radiation, and then began taking daily aromatase inhibitors, hormone pills that can reduce the risk for breast cancer recurrence (return).
This hormone therapy, however, caused Beth joint pain that interfered with her active lifestyle, and also led to such severe vaginal shrinkage and dryness that she could no longer have sexual intercourse, even if she used a lubricant. Beth worried about the impact on her husband, and felt old before her time, as a result of her inability to enjoy sex.
Erectile Dysfunction
Larry was in a second marriage of 3 years when he was diagnosed with an aggressive type of prostate cancer at age 66. He was in good health otherwise, and his oncology team recommended that he get radical prostatectomy (surgical removal of the prostate gland and seminal vesicles). Before surgery, Larry was almost always able to get and keep erections firm enough to enjoy sex. He hoped the nerve-sparing, robotic surgery would allow him to avoid damage to his sexuality.
However, after the surgery Larry was unable to get an erection firm enough for a sexual intercourse. He tried the erectile dysfunction drugs, but this didn’t help. Larry’s wife was 10 years younger, and she began to be frustrated with their sexual difficulties, as well as with his depression and emotional withdrawal. Larry was afraid of losing her, and he had no idea what to do next.
Infertility
Camila was only 19 and newly married when she was diagnosed with Hodgkin lymphoma. Her oncologist told her not to worry about her future fertility, because the chemotherapy she was getting has rarely caused such a problem. A year later, however, the cancer came back, and Camila needed chemotherapy drugs that were much more damaging to a woman’s eggs in the ovaries.
Camila was too afraid to delay her cancer treatment to investigate the option of freezing her eggs or embryos. She also knew that this would cost much more than she and her young husband could afford, especially with all her medical bills. Now, 3 years later, Camila has irregular periods and has not been able to get pregnant. She also has come to dread sex, because it just reminds her of all these problems.
Self-Help Program
Will2Love.com is a digital health company offering online help for people who have cancer-related problems with sexuality or fertility. Our goal is to double the number of survivors and their partners who get effective help for these issues by 2025.
From 2000 to 2016, I was a psychologist on the faculty of the University of Texas M.D. Anderson Cancer Center, Houston, where we received 3 small business grants from the National Cancer Institute to support our online, interactive programs to help men and women, which were launched in 2000. We also received significant help from grants for sexuality and prostate cancer programs from the American Cancer Society.
You can access the free information on www.Will2Love.com after simply signing up with your e-mail address. The free information includes a blog, monthly (recorded) webinars on special topics (which can be watched at any time), forums, and extensive patient resources on sexuality and cancer. We have also begun building a network of expert psychologists who can provide sex therapy or fertility counseling in the state where they are licensed, using secure videoconferencing. Note that our psychologists don’t accept private insurance, and Medicare and Medicaid don’t cover telehealth services in the home.
At the heart of this site are our self-help programs. Each program covers all types of cancers and explains the sexual and fertility side effects related to specific cancer treatments. We also offer a PRO portal that provides online training for health professionals.
A goal-setting feature helps the user set his or her highest priorities. The program creates a table with links to the information that will be most helpful for each person. Step-by-step self-help exercises help cancer survivors and their partners make changes in their sex lives or relationships, including dating after cancer. There is also information on making choices about special treatments for sexual or fertility issues. We have published 3 studies showing that this type of program improves men’s and women’s sexual satisfaction.
New Clinical Trial: Sexuality & Cancer
Will2Love has now joined with the American Cancer Society to test our new self-help program in a clinical trial. The Find Your PATHS (Pragmatic Assessment of a Tool to Help Survivors) to Sexual Health and Parenthood Study offers up to 6 months of free use of our men’s or women’s self-help programs to participants who agree to complete brief questionnaires and allow us to track their use of the website.
The study will test the effectiveness of personalized, in-depth self-help programs for cancer survivors who have problems with sexuality or fertility. Any American aged 18 years or older who has been diagnosed with cancer, or is the intimate partner of someone with cancer, and has concerns about sexuality and/or fertility can participate. Participants will complete a brief questionnaire and will be able to use the program for 3 months for free. After 3 months, those who agree to fill out a follow-up questionnaire will get another free 3-month access to the program.
To learn more about the study or to sign up for the study, visit www.Will2Love.com/FindYourPathsInfo. The study and the website carefully protect people’s privacy and conform to the government’s HIPAA laws related to the security and privacy of health information of every American. Each person in the study is assigned a special study number. Once the study is over and the results are analyzed, the list linking participants’ names or e-mails and their study numbers will be destroyed.
Commenting on this study, Otis Brawley, MD, Chief Medical Officer for the American Cancer Society said, “This study tests an online program that already has been shown in earlier versions to improve sexual function and satisfaction in men and women treated for cancer. If the trial is successful, it could improve care for the many people with unmet needs to prevent or resolve sexual dysfunction or infertility related to their cancer treatment.”
