By: Leslie R. Schover, PhD, Founder, Will2Love
Lena had only been married for three years and was in the last trimester of her pregnancy when she was diagnosed with breast cancer. She was treated successfully with chemotherapy during the pregnancy, and after she gave birth, with a partial mastectomy and radiation therapy. Now that her son is a year old, she is considering the potential for another child; however, changes in her appearance and sudden menopause have devastated her sex life. Her oncology team discouraged her from having another child and barely mentioned the possible pain and treatment side effects she experiences. She felt that her gynecologist has been of little help.
Ron is a 72-year-old widower who had a radical prostatectomy five years ago. He recently met a 63-year-old divorced woman on a cruise. Their attraction was mutual and strong, but because of his cancer treatment, Ron has erectile dysfunction and feels he is failing her with regards to her needs. Ron has tried pills with little success and is considering surgery.
These scenarios are very typical of dilemmas that may be faced by as many as 60% of cancer survivors in the United States who are diagnosed with long-term, severe sexual function problems. As many as half who are still in their reproductive years also cope with damaged fertility.
Dr. Leslie Schover, a clinical psychologist who has spent her career working on these themes, created Will2Love, an online resource, to help. Will2Love’s Bring it up! Cancer, Sex, and Fertility campaign has two goals: to increase the number of discussions patients and professionals have about sexuality and fertility in cancer care and to provide practical tips and tools that enable patients to get the help they need to better manage their problems.
Earlier this year, a review in the Journal of Cancer Survivorship, authored by Jennifer Barsky Reese, PhD and colleagues from Fox Chase Cancer Center* described a collection of 29 journal articles studying patient-professional communication on sexuality in cancer care. Beyond the United States, reaching into 9 other countries, only half of patients (28% of women and 60% of men) recalled any discussion of sexuality with their oncology team. In addition, only 10% of patients said their sexual concerns had been addressed. Health care providers tended to report somewhat more frequent discussions about sex, but fewer than 25% said they typically asked patients about sexual problems or offered treatment for them.
As the review outlines, research consistently reveals the significant problems patients and professionals face in managing sexuality and fertility issues associated with cancer. This is why Will2Love developed a new public health campaign: Bring It Up! Cancer, Sex, and Fertility. Central to this initiative is a 3-step action plans for cancer patients/partners and for oncology health care professionals to improve recognition and treatment of these important problems. The action plans are briefly outlined below:
- Step One: Ask for time to tackle a special question in busy clinics. At the start of an appointment, or even on the phone while scheduling, mention you need a few minutes to discuss an important issue. If needed, remind your health care professional during the visit that you have a question waiting.
- Step Two: Choose your question. You may want to ask a general question if you are just starting your cancer journey: "How can I avoid or overcome problems with sex or fertility related to my cancer treatment?" If you are already having a sexual problem, you can narrow down your question: "Since my cancer treatment, I've been having a problem with [e.g. erectile dysfunction or a loss of desire]. What kind of help is available?” Knowing your options to preserve fertility is a high priority before you start cancer treatment. During or after cancer treatment you also may be thinking about future parenthood: "How can I find out if I am still fertile, and what options do I have for becoming a parent?”
- Step 3: Don’t leave without a plan! Your oncology team may have limited knowledge on how to help with a sexuality or fertility question. It is their job, however, to help you find expert care. If they dismiss your concern or suggest you wait until later to deal with it, stay on track by asking about local resources to treat sex or fertility problems, a referral for specific counseling and education, or resources such as self-help books and websites.
Make sure to visit Will2Love, which provides free online information, including blogs, moderated forums, webinars, and extensive links to medically and clinically validated resources.
We hope that our Bring It Up! Campaign will lead to better care for reproductive health problems related to cancer treatment, so that they no longer rank among the top 5 unmet needs in repeated surveys of cancer survivors! As a digital health company offering online help for cancer-related sexual and fertility issues, Will2Love’s mission is to double the number of survivors receiving effective help by 2025.
Please register to attend our first Will2Love webinar on Wednesday evening, July 20, Bring It Up! Discussing Sex in Cancer Care with Dr. Reese and our own patient advisory board member, Erin Sullivan Wagner of AfterCancer.co.
Leslie R. Schover, PhD, is a clinical psychologist internationally recognized as an expert on sexual problems and infertility related to cancer treatment and other chronic illnesses. In 2016 she received the Holland Distinguished Leadership Award from the American Psychosocial Oncology Society recognizing her outstanding contributions to the field. She received a BA in psychology from Brown University, magna cum laude with honors in psychology. Her PhD research in clinical psychology at UCLA was supported by a Woodrow Wilson Research Grant in Women’s Studies. Her special training continued as a postdoctoral fellow in sex therapy and research at the State University of New York at Stony Brook. She became an Assistant Professor at the University of Texas MD Anderson Cancer Center in 1982, doing clinical work and research on cancer and sexuality. From 1986 to 1999 she was a Staff Psychologist at the Cleveland Clinic Foundation, returning to MD Anderson in 1999 where she continued to create and evaluate innovative treatment programs until she retired in early 2016 from her position as Professor of Behavioral Science. She now devotes her full time to Will2Love.