Cancer is not an unfamiliar disease to me. My mother died of cancer when I was 12. My oldest sister died of breast cancer, an aunt died of cancer (I don’t know which type), and my older brother is a prostate cancer survivor. So, when I was diagnosed with prostate cancer in October 2021, the news wasn’t as shocking as learning a year later that it had progressed to stage IV. “Incurable but treatable,” said the doctor.
Apparently, my prostate-specific antigen levels had been steadily going up for 6 or 7 years prior to the diagnosis, but my previous primary care physician had not given me that information, and I was never offered a prostate biopsy test. I only learned about the problem while trying to find a primary care physician after moving from Arkansas to South Carolina. During my initial visit, the doctor matter-of-factly informed me that the result from blood tests he had ordered indicated I had prostate cancer. But getting confirmation of the diagnosis and stage and receiving treatment took another year.
Because of issues with my health insurance network, it was difficult for me to get a referral to see a urologist and begin treatment. Then, once I was able to get an appointment, the date conflicted with a long-planned cross-country trip I was making to celebrate my upcoming 60th birthday, delaying confirmation of the diagnosis and stage. After returning from my trip, in July 2022, a swollen right testicle and pain from a torn rotator cuff sent me to the emergency room, where routine blood tests confirmed I had prostate cancer, and I was able to see a urologist within days.
He agreed with the initial diagnosis given by my primary care physician in 2021 and confirmed by the physicians in the emergency room. It was also during that visit that I learned the late stage of the disease.
I’ve made it my mission to raise awareness about the importance of cancer screenings, especially among men in the Black community.— Colbert English
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Providing Patient-Centered Care
I cried like a baby for hours and then became furious. Black men have a higher incidence of prostate cancer, higher rates of mortality, and are diagnosed with the cancer at a younger age than White men.1 So, why hadn’t I received a prostate biopsy and referrals to a specialist sooner, when the cancer might have been detected at an earlier, curable stage? It’s a question that haunts me still today, and I’ve made it my mission to raise awareness about the importance of cancer screenings, especially among men in the Black community.
An issue with medication I take for coronary artery disease precluded me from receiving the standard-of-care treatment for prostate cancer, so my initial therapy consisted of monthly injections of the hormone-based chemotherapy degarelix. The nonsteroidal antiandrogen agent enzalutamide was later added to my treatment regimen to boost the effectiveness of degarelix monotherapy.
Throughout this process, I felt like my oncologist treated me as a face in the crowd, rather than as an individual patient with specific needs. My questions and concerns were downplayed or ignored, and he didn’t seem troubled that I was having difficulty understanding and coping with the treatment-related changes my body was going through. Most important, he didn’t seem to care about the emotional turmoil I was undergoing as I struggled to come to terms with what it means to have metastatic prostate cancer.
Soon after moving to Philadelphia in the spring of 2023, I transferred my care to Fox Chase Cancer Center, and the change has been life-altering. There, my oncologist confirmed what I had been told by my previous medical team. I do have stage IV prostate cancer, and it is incurable but treatable. The major difference is he listens to my concerns. I’m sure he sees dozens of patients every day, but when I’m in his exam room, he is focused on me. I have his full attention, and he doesn’t leave the room until all my questions are answered.
In addition to enzalutamide, I am now receiving leuprolide injections every 6 months, which replaced the monthly injections of degarelix. The combination has been successful in keeping the cancer stable.
Finding Peace
Getting a late-stage prostate cancer diagnosis has made me more reflective about life. I’m truly grateful for the support of my family, especially my son and daughter, who often accompany me on my many clinical appointments and help boost my mood during difficult times.
At this stage of my life, I’m content to slow down and take the time to smell the roses, as cliché as that may sound. Cancer is a very personal disease. How you handle the diagnosis, I think, is different for everyone. For me, I’m learning to enjoy the simple routines of everyday life. I’m finally at peace.
REFERENCE
1. Lillard JW Jr, Moses KA, Mahal BA, et al: Racial disparities in Black men with prostate cancer: A literature review. Cancer 128:3787-3795, 2022.
Mr. English lives in Philadelphia, Pennsylvania.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
