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I Stand Up For Clinical Trials

I Stand Up For Clinical Trials

Back then, before the cancer, I was a school psychologist. I remember walking along the hallways, my footsteps echoing in the empty corridors as the elementary schoolchildren learned inside the classroom doors. But I was rarely alone in those halls. Of course there were the kids sipping from the water fountains, walking to the nurse’s office, or – worse! – the principal’s office. But more often than not, I’d find little five-year-old Logan sitting outside his classroom door.

“Hey Logan,” I’d say, crouching down. “What’s happening today?” Due to his chatting, his talking back to the teacher, and his tantrums, Logan often found himself banished from class. So I often found myself sitting down cross-legged on the floor next to him as Logan would proceed to pour his little heart out. Well, usually after a little coaxing.

Working in a school nurtured a part of me that had always been there – the drive to give to others, to help those that could use it. A drive that, after cancer pushed me into retirement a little earlier than planned, I still tried to keep alive through a whole different way of giving back: participating in clinic trials. 

About the Gleason score
After a prostate biopsy, the tissue samples are sent to a laboratory for analysis by a pathologist. If cancer is present, most pathologists grad eit according to the Gleason score, which assigns a grade from 1 to 5 based on how the cancerous cells look compared to normal prostate cells.

Grade 1. The cancerous tissue looks like normal prostate cells.
Grades 2 to 4. Some cells look like normal prostate cells, others do not.
Grade 5. The cells do not look like normal prostate cells. They appear to be scattered haphazardly throughout the prostate.

The higher the Gleason score, the more likely that the cancer will grow and spread rapidly. Pathologists often identify the two most common patterns of cells in the tissue, assign a Gleason grade to each, and add the grades. The result is a number between 2 and 10. A Gleason score of less than 6 indicates a less aggressive cancer. A grade 7 and up is considered more aggressive.

I was 51 years old, 26 years into my career, when I got the call… from my life insurance agent of all people. I’d been denied a renewal on my policy due to my PSA (Prostate Specific Antigen) score of 65 ng/mL. A few visits to my physician confirmed it: stage 3 adenocarcinoma of the prostate with a Gleason score of 10. For those of you who, like me at the time, have no idea what this means, it’s an incredibly aggressive type of prostate cancer, with cells that are less responsive to treatment. I imagine that a cancer diagnosis of any sort is some of the worst news a person can receive. A diagnosis of a cancer that is close to untreatable… well it was pretty much a nightmare.

Surgery wasn’t an option. So I proceeded to receive 54 radiation treatments and intramuscular shots and pills to stop my body from producing testosterone, which prostate cancer needs to grow. The treatment’s side effects included weight gain, osteoporosis, mood swings, hot flashes, night sweats and fatigue. Luckily my oncologist, Dr. Maha Hussain, and her team educated me to stay active, positive and practice yoga, which helped me immensely. My PSA dropped dramatically and, at one point, got as low as 1.0 ng/mL. We managed my cancer through these treatments for five years, and I began to view it as a chronic health condition that was under control.

In the fall of 2011, the cancer decided it was tired of playing nice and invaded my bones. Dr. Hussain told me that it was time for a change in treatment. I had two weeks of radiation to my spine. Then she offered me an opportunity to participate in a clinical trial instead of having a standard treatment of chemotherapy with IV Taxol.

At first I wasn’t sure about participating in a trial. There were the smaller concerns: not all trials are covered by insurance; they can mean lots of extra trips to the doctor’s office. But the small concerns were overshadowed by the big one: new treatments aren’t always better than the standard care. And they could have serious, maybe even deadly, side effects.

Through research, however, I learned that the University of Michigan Comprehensive Cancer Center – a Stand Up To Cancer Dream Team Institution – is nationally recognized for their cancer trials. And while Dr. Husain, for whom I had and have great trust and respect, clearly explained that the treatment might not provide the desired results, I felt that the potential for a significant decline in my cancer growth was worth pursuing. More importantly, I realized my participation in the trials could bring hope – maybe even, someday, a cure – to other cancer patients. It could be a way of leaving something meaningful behind for future generations. A way to lighten their load, to make them feel like there was hope, much as I tried to do as a school psychologist with children like Logan. 

My first clinical trial involved a new oral chemo, but after six months, we found that although my bone scan was stable, the cancer was spreading into my bladder. I then began a treatment that utilized the latest research in genetic targeting of cancer cells. My clinical trial now involves taking several oral medications on a daily basis, following my progress with routine blood work and quarterly bone and CT scans. And, for now, things seem to be under control. 

As the father of two sons, I have a personal stake in the prevention and treatment of prostate cancer. So I Stand Up For my sons, and for children like Logan. Even though I’m no longer able to wander the school hallways and sit down and help lift a little of the “weight of the world” off their shoulders, I’d like to think that, in my own small way, I’m helping ensure that my children and their children’s children will live in a better, healthier world. And if, heavens forbid, you find yourself in a position like mine, you can too by participating in a cancer clinical trial.

A graduate of the Combined Program in Education and Psychology at the University of Michigan, Joe Bushkuhl retired from his 31-year career as a school psychologist in June 2010. He currently resides in Ann Arbor, MI with his wife of 36 years, Barbara. He is the proud father of two sons: Benjamin, who is married to Rosa, and Jonathan.

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