Helping women and men preserve intimacy and a healthy sexual relationship during and after cancer treatment is a priority for Leslie Heron, the nurse practitioner in Seattle Cancer Care Alliance’s Survivorship Clinic. She has headed SCCA’s Cancer and Sexuality Workshop for the last four years and has seen a steady increase in the number of patients seeking information on the topic. SCCA caught up with Heron to hear what patients are asking about.
Q: Tell us what influenced you to realize that this is an important part of cancer care?
A: Because patients asked for it. Intimacy and sexuality do not seem important when compared with decisions about cancer treatment, yet every cancer treatment has the potential to affect intimacy and sexuality today and for years to come. Intimacy and sexuality is an essential part of being human, and that does not go away just because someone has cancer.
Q: What do you find best eases the tension and apprehension for people who want to get involved in a conversation about sex and cancer?
A: A sense of humor helps! Acknowledge it is not an easy topic to bring up, but that sexuality is a normal part of being human and is essential to discuss. And write your questions down, then you don’t have to think on your feet.
Q: Is talking about sex a difficult subject matter for patients and their providers?
A: Research shows that providers don’t bring it up because patients don’t ask, and patients don’t bring it up because their providers don’t ask (so the perception is that it must not be important). When the SCCA Workgroup on Intimacy, Sexuality, and Cancer surveyed patients, survivors, caregivers, staff and providers, we found the exact same thing. Patients wanted more information but often did not ask. Providers thought it was an important topic, but were concerned patients might be offended if they brought it up.
Q: What are some of the common issues and side effects that cancer patients face?
A: For men, the inability to get or maintain erections is the most common concern. For women, tissue dryness leading to pain in the vaginal area is most common. For both, fatigue, decreased libido, and altered body image contribute to the relationship and sexual dysfunction.
Q: Do patients often experience sexual side effects?
A: Yes. The rate of sexual dysfunction quoted on the National Institute of Health website is between 40 – 100 percent when looking across all cancer diagnoses. And, unlike many other side effects from cancer treatments, sexual side effects tend to persist or get worse over time. Up to 90 percent of cancer survivors report some sexual dysfunction more than 5 years after completing cancer treatment.
Q: Are there specific issues that affect partners, spouses or caregivers who are not physically but may be emotionally affected by cancer treatment?
A: Partners are not immune from the sexual side effects of cancer. They have role changes, such as from partner to caregiver. There are emotional stressors, such as guilt, fear, anger and helplessness that decrease libido and increase fatigue. And there is fear of causing pain or infection, or feeling selfish for asking for sex. And they don’t know when to re-engage and how to check in once they’ve lost that connection.
Q: Are there support services available to cancer patients?
A: Our own SCCA retail specialty shop, Shine, offers a variety of books and products to assist patients and caregivers. The staff is knowledgeable and helpful if you need help choosing the right product for your issue. Two books I frequently recommend are by Anne Katz, RN, Ph.D.: Man Cancer Sex and Woman Cancer Sex. Both are available at Shine. Our Resource Center, on the 3rd floor of the SCCA clinic, has a variety of books and handouts on this topic as well.
Q: What are some communication practices you recommend people can do to maintain closeness with their partner?
A: Notice the positives, and call them out! Be kind to each other. Say please and thank you. Tell them something you like about them in the moment you think of it – don’t keep it to yourself. There is a Buddhist practice of asking yourself before you speak: Is it true, is it necessary, and is it kind. Using that filter can go a long way to keeping lines of communication open between partners. Hand holding, foot rubs and flowers go a long way, too.
