Living with the long-term side effects of prostate cancer, from sexual to spiritual

 

In this fifth episode of our Survivorship series on Bench to Bedside and Beyond, Fred Hutch News writer Bonnie Rochman talks to James DeLong, who has lived with prostate cancer for 25 years, and Kelly Nelson, DNP, ARNP, director of Fred Hutch’s new sexual health clinic, about how a cancer diagnosis can wreak havoc on a person’s sex life—and why people no longer need to suffer in silence.

Key takeaways:

• James DeLong has lived with prostate cancer for 25 years. Diagnosed at 51 after a rising PSA, he has undergone 11 treatments, including hormone therapies and multiple rounds of radiation.
• Cancer transformed his emotional life and taught him to accept difficult feelings. Rather than suppressing anxiety, DeLong learned to acknowledge it and let the emotions pass. He describes cancer as a “teacher” that helped him develop mindfulness, trust and emotional resilience.
• DeLong’s career as a social worker and educator shaped how he copes with adversity. He practices leaning into gratitude, connection and remaining engaged through exercise and dance.
• Physical and sexual side effects have been major parts of his survivorship experience. After prostate surgery, he had complete erectile dysfunction and later urinary incontinence. With professional help and his wife’s partnership, he discovered new approaches to intimacy.
• Support and vulnerability matter. Through Healing Circles and men’s support groups, he has found spaces where men can share emotions openly amid the presence of uncertainty and illness.
• Nelson created Fred Hutch’s Sexual Health Clinic to address an overlooked side effect of cancer treatment. After seven years in breast oncology, she saw that short oncology appointments left little time to discuss sexual health concerns such as low libido, vaginal dryness and painful intercourse.
• Cancer treatment can significantly affect sexual health and quality of life. Hormonal treatments such as aromatase inhibitors and tamoxifen can cause menopause-like symptoms, including severe vaginal dryness, pain and reduced libido. Many patients avoid bringing these issues up because of embarrassment, limited appointment time or the belief that other cancer concerns are more important.
• The Sexual Health Clinic provides comprehensive, individualized support. Beyond discussing medications such as vaginal estrogen and moisturizers, Nelson can connect patients with sex therapy, pelvic-floor physical therapy, and other resources, including recommendations for dilators and vibrators.
• The clinic began by treating breast cancer patients, but Nelson intends to treat men too. There are plans to expand to gynecologic, genitourinary and gastrointestinal cancers and eventually serve all Fred Hutch patients as well as patients treated elsewhere.

Find out about Fred Hutch’s survivorship offerings, learn more about survivorship issues from the American Cancer Society and explore the National Cancer Institute’s Survivorship Resources.

Listen to the audio interview

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Tune in for more episodes of Bench to Bedside and Beyond. And if you’re interested in being a guest, please reach out to dmapes@fredhutch.org or brochman@fredhutch.org.