LESLIE R. SCHOVER, PH.D.

SEXUAL PROBLEMS ARE AMONG the most common side effects of cancer treatment. Unlike other bothersome issues — say, anxiety over a new diagnosis, mild depression or fatigue related to chemotherapy &mdash; sexual problems do not always resolve with time. Returning to a pleasurable sex life usually requires medical treatment along with good communication, affection and teamwork.

Up to 80 percent of people treated for prostate, breast, colorectal, bladder or women’s cancers (cervix, ovarian, uterine) end up with damaged sexual function, according to the results of a variety of studies. Among people with leukemia, lymphoma or childhood cancers, around a third develop new sexual problems. The most common include a decreased desire for sex (in both men and women), erection problems, and vaginal dryness and pain during intercourse (especially among women in sudden menopause due to cancer treatment).

The stereotype is that cancer survivors have sexual issues because they feel unattractive and cannot adjust to changes like mastectomy or an ostomy. In reality, many cancer treatments interfere directly with the body systems necessary for a healthy sexual response. For example, surgery in the pelvic area cuts nerves or removes crucial organs. Radiation to the pelvis impedes the blood circulation that is crucial for erections and vaginal expansion and lubrication during arousal. Chemotherapy can lead to nerve damage or hormone deficiencies, and the new immunotherapies may cause severe fatigue and hormone changes.

Treatment to the brain has the potential to damage sexual excitement and pleasure.

Many patients never discuss sex or fertility issues with their oncology teams or, at best, get warned of possible side effects during the informed consent process prior to their treatment. With so many other anxieties arising in the early days after cancer diagnosis, any mention of sexuality may fall off the radar.

During treatment, both patients and partners may fear that sexual contact is unsafe but be too embarrassed to ask. After treatment ends, they may wonder when to resume sexual activity. If new sexual problems are ruining what used to be a pleasurable and intimate part of their relationship, they do not know where to turn. Even when patients are assertive enough to bring up the topic, their doctors and nurses may not offer satisfactory answers or referrals.

I am a clinical psychologist and a two-time survivor of breast cancer. I have spent most of my career trying to understand, prevent and overcome cancer-related problems with sexuality and fertility. As a faculty member at the University of Texas MD Anderson Cancer Center, I received grants from the National Cancer Institute and American Cancer Society to fund our development of online self-help programs for men’s and women’s sexual and fertility problems related to cancer treatment. We published the results of several studies showing that the programs improved sexual function and satisfaction and helped with decisions about preserving fertility. I retired in early 2016 to devote myself full time to Will2Love.com, a digital health company with a mission to increase the number of people who receive high-quality, research-based help for sex and fertility issues after cancer by 50 percent by 2025.

Will2Love is joining the American Cancer Society in a six-month study, Find Your PATHS (Pragmatic Assessment of a Tool to Help Survivors) to Sexual Health and Parenthood. We are testing the current versions of our personalized, in-depth programs, which provide evidence-based sexuality and fertility education, plus guidance and self-help resources for patients with cancer and their intimate partners. The goal of the study is to determine whether the programs improve sexual function and satisfaction and decrease distress. The study is open to anyone aged 18 years or older who has been diagnosed with cancer or is the intimate partner of someone with cancer, has concerns about sexuality and/or fertility and lives in the United States.

Participants who complete a brief online questionnaire will be able to use the self-help program for three months, free of charge. After that, they will be asked to fill out followup questionnaires. If they do so, they will get another three months of access to the program. Privacy is carefully protected. To learn more about the study or to sign up, visit will2love.com/FindYourPathsInfo. Another easy option: Go to Will2Love’s home page (will2love.com), where an announcement about Find Your PATHS will pop up.

Leslie R. Schover, Ph.D., is a clinical psychologist who specializes in helping patients overcome cancer-related concerns about sex and fertility. After retiring as a faculty member at the University of Texas MD Anderson Cancer Center, she founded Will2Love in 2016. The same year, she received the Jimmie Holland Leadership Award from the American Psychosocial Oncology Society.

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A free online pilot program helps people with cancer and their partners work through sexual health and fertility obstacles.

Finding Your PATHS and Addressing Sexual Health

Over 60 percent of the 15.5 million cancer survivors in the US end up with severe sexual problems that do not go away by themselves, yet fewer than 20 percent ever get help from a health professional. In surveys, oncologists, nurses, psychologists and other professionals agree that sex is an important issue to discuss — yet each group also asserts that talking about sex is “not my job!” Doctors think nurses should do it &mdash; nurses think doctors should do it &mdash; and psychologists just think some other professional should do it!

Infertility affects fewer cancer survivors, but each year in the US, another 170,000 people under age 45 are diagnosed with cancer and half will face damaged fertility. With men and women starting families at later ages, more young adults are facing cancer-related infertility. We can freeze sperm or eggs for the future, but only about 25 percent of men and 5 percent of women take advantage of these technologies.

Even in top cancer centers, with excellent care and easy availability of sex therapists, gynecologists, urologists, sperm banks and fertility preservation programs, sex and fertility often falls off the radar in discussions with patients. Only 15 percent of cancer patients in the US are treated at major cancer centers that would be most likely to provide reproductive health care, and only six centers (to my knowledge) have specialized clinics to help with sexual problems.

As a psychologist myself, I have always been an advocate for empowering patients to make the best health decisions.

What if you are a 52-year-old man diagnosed with prostate cancer and have the surgeon telling you that nerve-sparing prostatectomy is your best shot at a long life while the radiation oncologist says you can avoid erection problems and urinary problems if you have proton beam therapy?

What if you are a 34-year-old woman, four months pregnant with your first and very wanted child, when you find out you have breast cancer? Your local doctor tells you to terminate your pregnancy if you want to live, but you find articles on the internet that say you may be able to have good cancer treatment and save your baby?

What if you are a happily-married 68-year-old woman on hormone therapy for breast cancer that shrinks your vagina and makes sex so painful that you just give it up?

I founded Will2Love as an online place where people can find the answers to their questions 24/7, in the privacy of home, without depending on their oncology team to take enough time to truly educate them.

And on Tuesday, February 21, I’ll be co-moderating the #CureConnect tweetchat at 9 p.m. EST, to discuss cancer-related sexuality and fertility issues. Please join me for an opportunity to ask any questions you might have, share advice and tips and dispel some myths.

On Feb. 21, we'll be co-hosting a tweet chat with Oncology Nursing News and Will2Love's Leslie R. Schover about sexual health and fertility after a cancer diagnosis. Join us at 9 p.m. EST with the hashtag #CureConnect

Author | LESLIE R. SCHOVER, PH.D.

Finding Your PATHS and Addressing Sexual Health

Nowhere to Turn: Cancer-Related Problems with Sexual Health or Fertility