As many as 60% of cancer survivors in the United States face long-term, severe problems with sexual function. As many as half still in their reproductive years also cope with damaged fertility. This week an article in the Journal of Clinical Oncology reported that 23% of men with prostate cancer had long-term regrets about their choice of treatment—largely because of sexual dysfunction.
As followers of this blog know, Will2Love.com was created to give cancer patients, their intimate partners, and the health professionals who treat them a toolkit to better manage the sexual and fertility consequences of cancer treatment.
July is a big month for Will2Love. We are launching our paid services in a few days, including subscriptions to our self-help programs for men and women and to our PRO Portal for health professionals. We are holding our first monthly webinar at 9pm EDT on Thursday, July 20: Bring It Up! Talking about Sex in Cancer Care. Please register to attend by clicking on this link: Register for Bring It Up! Webinar.
We are also hosting a public health campaign: Bring It Up: Cancer, Sex, and Fertility. The 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.
A recent paper in the Journal of Cancer Survivorship, authored by my friend and colleague Jennifer Barsky Reese, PhD and colleagues from Fox Chase Cancer Center* described a review of 29 journal articles studying patient-professional communication on sexuality in cancer care. Not only in the United States, but also in 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.
Research consistently reveals the significant problems patients and professionals face in managing sexuality and fertility issues associated with cancer. Central to our Bring It Up! initiative are 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.
The patient action plan includes the following advice:
- 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 [erections, vaginal dryness and pain, loss of desire for sex, reaching orgasm]. 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.
The health care professional action plan has the following practical advice:
- Step One: Bring up sex and fertility once each visit. All it takes is one question, prefaced by a normalizing statement: "Many patients have damage to their sex lives or fertility from cancer treatment. Are you concerned about either issue?” This question could work with a newly diagnosed patient, while discussing the treatment plan, or at a follow-up visit during or after treatment. If the patient answers "yes", here is a quick next step!
- Step Two: Train and support a clinic sex and fertility expert. Tell your patient you have a staff member in the clinic who can discuss these questions and concerns. Who is your sex expert? Ideally a nurse, PA, social worker, patient navigator, or psychologist who often has same-day availability or can schedule a return visit quickly. A separate visit may be easier for insurance reimbursement. Reward this staff member for getting extra training in the types of sexual and fertility impairments seen in your patient population, having medical and mental health treatment options for referral, and discussing these topics without anxiety or embarrassment.
- In addition, you may want to provide a small patient education "library" of booklets, websites, books, and videos focusing on sex, fertility and cancer issues. You can also refer patients to Will2Love.com, which provides free online information, including blogs, moderated forums, webinars, and extensive links to medically and clinically validated resources.
- Step 3: Create a specialist network. Since most of these problems are best treated with multidisciplinary care, do the research to create a network of specialists with expertise in treating cancer-related sexual or fertility problems. Depending on the gender and age of your patient population, your referral network may include:
- Multidisciplinary sexual clinics in your local cancer center or community
- Licensed mental health professionals trained in both psycho-oncology and fertility preservation
- Gynecologists interested in menopause and pelvic pain
- Urologists or male sexual medicine specialists who treat sexual problems
- Physical therapists with special skills in pelvic disorders (sexual pain and incontinence)
For cancer centers or health care systems who have specialists on staff, referrals increase revenue, but finding experts can be a challenge for smaller practices, especially outside of big cities. You may want to encourage interested local clinicians to get extra training in treating cancer-related sexual dysfunction; contact regional chapters of professional organizations or advocacy groups to identify experts; or consider telehealth as an option for specialized mental health consultation.
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.
If you miss the webinar, it will be available as a recording afterwards on Will2Love.com in the webinars section.