Sexuality & Survivorship

Published in the National Brain Tumor Society's quarterly newsletter Search

In the first few days or weeks after receiving a brain tumor diagnosis, most people are focused primarily on big questions of lifesaving treatment and survival. Their medical appointments center around topics such as surgery, radiation and chemotherapy, while long-term quality-of-life discussions wait for later.

But after the moment of initial crisis has passed, quality-of-life issues suddenly matter much more. Some survivors find themselves coping with deficits affecting speech, vision or emotions. Usually they are able to bring up these issues in meetings with their physicians and receive referrals to the appropriate therapies. But if their sexual health has been affected, survivors may feel uncomfortable telling their physician, who in turn may feel awkward or unprepared to offer any information or guidance.

Because it can be so difficult to bring up the topic of sexual function, many survivors feel isolated, ashamed and alone with their problems, not realizing that they are surprisingly common. One study found that a group of cancer survivors ranked the loss of sexual desire as one of the top 10 most severe side effects of their chemotherapy. Another study of cancer survivors found that altered sexuality and family distress had the most negative effects on their social well-being. And in a third study, 41% of cancer survivors reported experiencing sexual dysfunction. When they ranked the top 10 overall problems experienced, sexual dysfunction came in sixth.

A number of physical factors that arise in brain tumor treatment can affect sexuality. Side effects from surgery, hormonal changes, radiation, chemotherapy and medications can significantly affect sexual function, making intercourse difficult or uncomfortable. Some treatments may cause early menopause in women, for example, while others may cause impotence in men. Survivors may have changes in their level of sexual desire, or find that their intimate life is affected by fatigue, balance issues, or changes in personality. As a result, survivors may feel disconnected from their partner at a time when they most need the emotional connection and reassurance of physical intimacy.

Michael Krychman, MD, MPH is the Medical Director of Sexual Medicine at Hoag Memorial Hospital, as well as Executive Director of the Southern California Center for Sexual Health and Survivorship. In his research and his medical practice, he has worked with many patients and caregivers who are struggling with issues of sexuality and intimacy after surviving brain tumors.

“Sexual health is important,” said Krychman. “A good, active, intimate relationship has been shown to decrease chronic disease, increase immunity and help with pain control through the release of endorphins. Even so, many doctors are uncomfortable talking about sexuality and also don’t feel like they have the time. They may hesitate to bring up the subject and do not know how to answer questions. I find patients are so relieved when they have someone they can talk to about it, instead of just being sent home to cope on their own without support.”

When working with brain tumor survivors, Krychman evaluates potential medical, treatment and psychological factors, and works with his patients’ primary oncologist or neurosurgeon. He may provide counseling, practical suggestions, reading material and even medication as needed. Patients who are struggling with reduced self-confidence, performance anxiety or body-image issues due to their treatments may find reassurance through counseling.

A major consideration for many couples is how to weather the changes in their relationship that are brought about by the diagnosis and treatment of a brain tumor. “When intimate partners cross the line into becoming caregivers, it can be very hard for a couple to maintain physical intimacy and emotional connectedness,” said Krychman. “Sometimes the best solution can be to find an alternate caregiver for the patient. It’s important that the partner gets some time away from being a caregiver. The couple should also work on redirecting discussions so they’re both getting a break from talking about the brain tumor, the mortgage, the children. It’s about learning to reconnect on an emotional level.” Incorporating non-sexual touching, such as massage or bathing together, also can help couples reconnect and provide comfort.

Krychman emphasized the key role that intimacy plays in overall well-being. “I think we underestimate the power of human touch,” he said. “It’s really important to understand that it’s about connectedness and intimacy, not only about intercourse. I once had to visit a patient and her husband in the hospital just so I could make a note in her chart that it was okay for her husband to sleep in bed with her. She had end-stage cancer, and it was important to her to have the closeness with her husband at that time, but it made some people on staff uncomfortable.”

Brain tumor patients who are having sexual health problems should start by talking to their physicians. “They cannot treat a problem if they don’t know it exists,” said Krychman. “Don’t take no for an answer if you don’t get the help you need right away. There are sensitive health care providers out there who are dedicated to the comprehensive care of their patients. Just surviving isn’t enough—quality of life really matters.”

Copyright © E.G. Communications, Inc. 2014