Jonathan Henry met his wife Sara when they were both attending the University of Vermont. Both of their fathers were ministers, lending a sense of familiarity to the unknown waters of new courtship. 30 years later, the ties of their bond have only strengthened, despite the many unforeseen challenges of their relationship. Ten years ago came one of the couple’s biggest tests: In the prime of his life, Jon was diagnosed with prostate cancer at just 44 years old.
For years he threw himself into work, balancing time with his wife and two sons along with his professional success. And then, one day in 2007, his body urged him to slow down; a racing heart and palpitations sent Jon to his primary care physician. Because he was over 40, his doctor ran a PSA test, the routine blood test for prostate cancer. “He told me I had the PSA level of a 70-year-old man,” said Jon.
Jon went for a follow-up test, with the results showing an even higher PSA level, and leading to a prostate biopsy. Jon received the results: the biopsy was positive for cancer. “I immediately began to confront my mortality, though I had absolutely no idea what was in store for me.”
Shared decision making, which has been defined as “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences,” (Shared Decision Making: A Model for Clinical Practice), was critical for Jon; because of his young age, he and his team of healthcare professionals carefully weighed the benefits and downsides of each treatment option. After second and third opinions, and many discussions with his family, Jon ultimately chose a robotic prostatectomy despite the known side effects that could arise.
After his prostate was removed, the side effects– including short-term incontinence and longer-term erectile dysfunction – placed incredible strain on Jon and his self-identity. He started to pull away from his wife, finding solace in the familiarity of the routine roles of work and fatherhood. He also shouldered the burden of a positive surgical margin, meaning the cancer had a 40% chance of returning. “The tumor was at the edge of my prostate, and the surgeon could have nicked the edge during the removal,” shared Jon. “You are inexorably changed by these mutant cells which you know can come back at any time.”
Despite an eight-year period of non-recurrence, Jon felt broken because he suffered with erectile dysfunction. “I shut down emotionally,” he said. A year ago, his PSA rose to the detectable level of .2, and his life was shaken again. “I decided in those moments enough was enough.” He attended a men’s retreat where he redefined his own sense of masculinity and sexuality, and began a refocused dedication to improving his fitness and overall health.
Despite losing 50 pounds over the last year, his PSA level continued to rise. By January of 2017 he was preparing to begin radiation and hormone deprivation therapy. During his treatment, he was active in his support group, finding solace and comfort in sharing his own story alongside the account of other men. “I suffered in silence for a long time, and there are still days I don’t want to talk about my journey, even as an extrovert,” said Jon. “But there is a power to the personal stories; it’s the sharing that binds us.”
Jon currently serves as a co-facilitator for Caring Connections Men’s Health Network in Bangor. The group serves men who have been diagnosed with prostate, testicular, and penile cancers. Spouses are encouraged to join. For more details about the free and confidential monthly meetings, contact Program Manager Robin Long: rlong@bangory.org.
Thank you to Jon for sharing his experience.
If you’d like to share an experience with shared decision making, or with challenging side effects from treatment, we welcome your story. E-mail: info@mainecancer.org.