An Unconventional Journey
By John Mullineaux
I was diagnosed with intermediate risk prostate cancer over a decade ago at the age of 54. Hearing that diagnosis was terrifying and I reacted by trying to learn everything I could about the disease. I looked at all the primary treatment modalities and based on the data available at that time, chose to have surgery. I interviewed two urologists and selected one to do the surgery.
The surgery itself went well and I recovered quickly. The pathology report confirmed my Gleason score of 3+4=7 and the intermediate risk nature of my cancer. It also showed a positive surgical margin putting me at higher risk for recurrence. Six months after surgery my PSA rose sharply. At 9 months, it was still rising rapidly and it was clear my cancer had recurred.
My urologist recommended radiation. I had chosen surgery, in part, because it allowed me to have subsequent radiation. However, I left his office that morning feeling like I was on a prostate cancer conveyor belt: surgery fails, try radiation and the next stop after that is the hormonal station. Still, I interviewed 2 radiation oncologists, one local and one nationally renown. Neither could give me more than a 50-50 chance of a cure and even the expert had mentioned what I considered significant risk for additional side effects.
At the urging of a few members of my support group, I made an appointment with a nationally renowned medical oncologist who specializes in prostate cancer. He offered me three options: 1. Avodart only for now, 2. triple hormonal blockade® therapy or 3. hormonal therapy plus radiation.
I had already interviewed the radiation oncologist he recommended, therefore I ruled the third option out. Being a type A executive, the Avodart only option 1. didn’t feel like enough treatment. So I opted for 2. triple hormone blockade therapy knowing that it was not curative, but hoping it would buy me enough time for better therapies to be developed and also bypass the potential side effects of radiation. Additionally, I adopted the Mediterranean diet and started taking a number of supplements my oncologist recommended.
I did not want to be on hormones the rest of my life, so before starting hormonal therapy, I had a discussion with my oncologist and we agreed to a stopping point for the therapy. He was comfortable with me stopping 6 months after my PSA became undetectable. I reached that stopping point after 9 months and discontinued therapy but stayed on Avodart, and the diet and supplements he recommended. My PSA remained undetectable for over 2 years, after which it started rising very slowly. My oncologist suggested I go on Metformin, not because I am diabetic but because it has anti-cancer properties. For the last 4 years, my PSA has been essentially flat bouncing up and down between 0.4 and 0.7.
Since my surgery, I have been actively involved in one support group or another helping men and their partners who are dealing with this disease. I firmly believe in providing information to patients, empowering them to make decisions with their doctors. Do I follow my doctor’s recommendations? I do, but only when they make sense to me. I have fired my share of doctors who recommended something without any reason to back up their recommendation.
With knowledge you can do more than survive this disease, you can thrive with it.
See a short video of John’s story here – in his own words.
John Mullineaux is a volunteer on PAACT’s free Helpline, and can be reached a firstname.lastname@example.org