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Prostate Cancer’s Time Zone

November 14, 2016

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My writing therapy began 21-years ago, after my doctor sewed my tongue to the floor of my mouth so he could insert 30 multi-colored catheters through my cheeks to encircle the tumor in my tongue. He then slit my throat and installed a breathing tube. Engulfed in pain and stripped of voice, my nurse gave me used computer paper to write on, so I could communicate with her. I continue to write thanks to my wife, Monica, my shining North Star.

I survived that week of intense radiation treatment called Brachytherapy on morphine. I endured two treatments per day where a radioactive isotope was inserted into a catheter, then moved into position adjacent to my tumor where it sat for a few seconds before being removed and placed in the next catheter. They repeated this process for a couple of hours until all 30 catheters were completed. And weeks after they finished, I received external beam gamma-radiation therapy. I wore a specially designed lead mask to limit my head’s exposure to the radiation’s killing fields that robbed my taste buds, burnt my neck to a blacken hue, killed my right salivating gland and damaged my right jaw’s nerve. My body withered each day. I faked medical weigh-ins by stuffing rolls of nickels in my pockets, because my doctor had threatened to insert a feeding tube if I continued to lose weight.

After months of an enriched diet, which included ensure plus and Bryers Ice Cream I gained weight, only to reenter the hospital and have a cancerous tumor removed from my neck. Post surgery my right arm drooped, which made my weak jump-shot even weaker. I restarted intense pain management. Fortunately, Monica enjoyed shooting hoops with our precocious son, Charles. She later, introduced me to the writer’s group, “Cancer In Other Words,” where we help each other heal emotionally while traversing landscapes littered with radiation, chemo, and surgery choices.

At our writer’s group we would respond to prompts such as a bowl of pills, a series of words or pictures that would propel us to exotic lands where our souls would find peace when we read our writings to each other, transforming our four walls into a spiritual journey. At a previous writer’s session a fellow writer celebrated her fifth year post breast cancer treatment with a cake−a re-birthday of sort, and another writer announced his 10th year surviving colorectal cancer. We like counting by “5s,” unfortunately malignant tumors can return, like prostate cancer returning in a colleague after twelve years. Hopefully his new treatment will provide another twelve years. Some writers with multiple cancers have five year counting clocks staggered like time zones. For example, my first clock started ticking in 1995 for tongue cancer, the second one started in 1997 for neck cancer, and the third one started ticking in 2008 for prostate cancer and over time writing has synchronized my pain with my ticking clocks.

My Prostate cancer was detected after my Prostate Specific Antigen (PSA) score jumped from 2.2 to 3.15 in a single year, when it had been gradually rising. Physicians told me it was within the normal range of less than 4.0; however, my engineer’s voice said, “Don’t overlook the inflection data point.” Since PSA only indicates prostatic health, I requested a biopsy. My Gleason score of 3+3 considered low to intermediate cancer risk by some made me a candidate for active surveillance; however, my previous cancer experiences told me otherwise. I selected a robotic-prostatectomy. Post surgery my Gleason score of 3+4 suggested active surveillance may not have been appropriate.

It’s Time to Rethink Active Surveillance in African American Men With Prostate Cancer as suggested in a January 2016 article by Oleksandr Kryvenko, MD, an assistant professor of pathology and urology at Sylvester Comprehensive Cancer Center at the University of Miami Miller School. Just a year earlier Randy Dotinga’s article ‘Watchful Waiting’ Becoming More Common For Prostate Cancer Patients quoted Dr. Matthew Cooperberg, the Helen Diller Family Chair in Urology at the University of California, San Francisco, “Ultimately, the number of men who will die of prostate cancer because they chose active surveillance cannot be zero by definition.” In Geraldine A. Collier’s April 2016 article, Searching for reasons African-American men face increased risk of prostate cancer she stated, “Not only are African-American men approximately 125 percent more likely than Caucasians to develop prostate cancer, they are also 150 percent more likely to die, especially young men in their 40’s, because of a more aggressive form of the malignancy,” which reinforces Dr. Kryvenko’s point.

I was invited by the Research Advocacy Network to attend the 2016 American Association of Clinical Oncologist Conference, where I sat in on the Evolving Recommendations on Prostate Cancer Screening Panel discussion chaired by Dr. Otis Brawley. He had also chaired the US Preventive Services Taskforce’s 2012 decision that restricted PSA test for all men. Muhammad Ali had just died the day before and Dr. Brawley opened his discussion with an Ali quote. “The man who views the world at 50 the same as he did at 20 has wasted 30 years of life.” I had heard Dr. Brawley say in an earlier Ted Talk, “A good scientist understand three thing: 1) What we know, 2) What we don’t know and 3) What we believe we know.” I wonder, was their 2012 decision based on understanding 1, 2 or 3? Dr. Brawley said during his questioning and answer session, “He didn’t believe there was a biological difference between Black and White men’s prostate cancer.” He felt the disparity of treatment was the problem.

Advocacy groups like Prostate Health Education Network, which I’m a member, have petitioned them to revise their ruling. I’m hopeful within the next 30 years doctors will have solved prostate cancer detection and treatment issues.

How many men will die before we know?

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