Addressing Sexuality and Fertility Issues in Breast Cancer Patients

Leslie R. Schover, PhD

Many patients with breast cancer experience sexuality issues related to treatment but do not receive adequate counseling or treatment for these adverse events (AEs). The reason is often that their providers do not bring up the subject of sexual health or follow up on problems, said Leslie Schover, PhD, founder of the Will2Love website, an online resource to help guide cancer survivors in sexual wellness and parenthood. At the 2017 Miami Breast Cancer Conference, Schover discussed strategies for this problem and steps her website is taking to promote sexual health among patients.

At least 60% of women with breast cancer end up with some form of sexual AE, according to Schover, a past professor of behavioral science at The University of Texas MD Anderson Cancer Center, where she created and evaluated innovative treatment programs for cancer and sexual health. The most common AEs are loss of desire for sex, vaginal dryness, pain related to vaginal atrophy, and difficulty reaching orgasm. These problems can lead to other physical and emotional difficulties.

The AEs are most commonly caused by systemic treatments, such as chemotherapy; these are particularly problematic in premenopausal women and can be severe and persistent. It is important, therefore, to make sure medical attention is available and utilized, Schover said. “For patients with cancer overall, fewer than 20% ever see a health professional for 1 of these problems.” Surveys have shown that many oncologists do not bring up the topic of sexuality at all. Further, women who do ask their providers questions about sexual health often do not find the answers helpful, Schover said.

Schover said oncological care should extend toward addressing these aspects of cancer treatment. However, she said few gynecologists or mental health professionals have the proper training or interest to treat sexual health.

Embarrassment also is another impediment because it stops women from asking questions and clinicians from raising the issue. Patients may feel their questions are a waste of the clinician’s time. Age, cultural background, and sexual orientation also keep patients from asking about problems with sexuality. Some patients do not realize that the problems they are having with sexuality are related to the treatment they received for cancer.

Because so many factors are involved, the “best treatment should involve not just prescribing medical treatment but also doing some counseling,” said Schover. If the patient is in a relationship, involving the partner in treatment can be beneficial, too.

At the very least, the provider should “ask 1 general question” about sexuality during a patient visit, Schover said. She suggested something simple, such as: “Many patients have problems with sexuality after this treatment. I’m wondering how you’re doing.” There is also the option of using sexuality checklists as a guide for patient interaction, but these can get left by the wayside, with no follow-up, which only serves to frustrate patients further. “They’ve indicated that they have a problem and they expect somebody to help them,” Schover explained, “and nobody brings it up.”

Schover suggested that a practice or clinic have at least 1 staff member who is trained to be the local sex and fertility expert. This person should be comfortable discussing these topics and be informed about breast cancer treatment. This same resident expert should be equipped with helpful informative materials, such as booklets, websites, and videos. It is also important to know what local specialists are available: gynecologists who understand menopause symptoms and pain, fertility clinics, etc. Schover said that the plentiful resources available in an urban center would make this job much easier than it would be for those practicing oncology care in less populated areas. The internet, however, can play a significant part in easing the burden.

Schover’s digital health company Will2Love can be used as a resource for patients who need information about managing sexual health related to cancer treatment. Will2Love was, in fact, born of Schover’s frustration with the lack of change in the treatment for these issues. “I wanted there to be 1 comprehensive place where men and women with cancer could go to get answers and help,” she explained, “and where health professionals could go also to get some extra training and knowledge.”

Will2Love.com offers free content including a blog by Schover, moderated online forums for both patients and healthcare professionals and an extensive list of resources. This list provides patients with names of trusted advocacy groups, experts, and sexual health product providers. There are also in-depth descriptions of how infertility can be caused by cancer treatments and the many options available for fertility preservation. Patients can also learn about the emotional issues that interact with fertility.

Recently, Schover conducted tests on the Will2Love online self-health programs developed through National Cancer Institute grants. These were randomized trials with patients from MD Anderson comparing sexual health improvements in women who used the website alone or the website with in-person counseling sessions.

Both patient cohorts improved in this trial. The group that received counseling improved faster, but had a lapse in progress. The website-only group had no such regression. “By 6 months,” Schover said, “they were kind of equal, and were significantly better than where they had started off.” Additionally, Schover said, “women in the trial spent an average of 2.5 hours using the website, which is unusually long for online interventions.”

Will2Love self-help programs reach across different cancer sites with information on the known sexual and fertility AEs of the common forms of cancer treatment. Emotional problems are covered as well, with help on improving sexual communication, dating after cancer, and cultural and societal attitudes that surround sexuality.

The program is also personalized. Users can set and prioritize their goals. Patients are offered articles, exercises, and suggestions for medical care, as well as information on potential barriers to sexual health and strategies for overcoming them. These features help patients to navigate all the resources the program offers.

Schover said Will2Love has plans to launch telehealth video-counseling in the near future—with trained patient advocates and expert psychologists available. “It’s very hard to find someone who has expertise in those areas, outside of a very few cancer centers who have sexuality clinics, or if you live in New York, Los Angeles,or San Francisco.”

Will2Love is also working to close the treatment gap by providing training and information for healthcare professionals in addition to patients. The “Pro Portal” will operate with “online skills training and a very detailed clinician’s manual on how to use our self-help programs with men and women.” Healthcare professionals will be able to use the program to supplement counseling or as a follow-up to initial counseling.

In the next few months, Will2Love will begin a collaborative agreement with the American Cancer Society (ACS) to determine its effectiveness. This will involve a free pilot trial of the program via a link on ACS webpages on sex or fertility. If patients are willing to fill out questionnaires, they receive a free 3-month subscription to the program with the opportunity to renew for another 3 months.

With this trial, Schover will be able to gauge “how many people pick up on the link, how many visit our site and then decide not to participate, and how many people do participate.”