What I Learned After Getting Prostate Cancer a Third Time
This story begins in 2013 with an unexpected diagnosis of prostate cancer with a Gleason score of 9 and a PSA reading of just 2.1. You read the numbers correctly. My general practitioner (GP) assured me that since my PSA score was under 3, it suggested there was a zero possibility of prostate cancer. He confirmed his observation following a digital exam and after not finding anything that felt suspicious.
He suggested my prostate gland was a bit large but was in the "normal" range for a 69-year-old guy. He had been treating me for an enlarged prostate for several years and yet my evening sleep pattern was often disturbed with multiple trips to pee. At the same time, my PSA scores had been slowly rising for a few years. Over time my 1.7 score had risen to 2.5. Yet the GP was not concerned as I apparently had not reached his referral trigger of 3.1 to see a urologist.
I asked for a referral
I questioned the wisdom of waiting and at one point asked for a referral. I was told while it was not necessary, such a visit might offer me some peace of mind. Much to my shock that one visit along with a more aggressive digital exam revealed the presence of a previously undetected lump on the back side of the prostate gland. After a biopsy and scans were performed, I was given a choice of radiation or surgery. Scans had suggested the cancer was contained. I opted for surgery since there was a chance the cancer could return in the future.
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Five years later, following the successful removal of my prostate, the PSA level began to rise from a 0.02 to 1.3. My next decision point was to undergo a combination of radiation and Lupron. The latter was a so called 6-month shot. The negative impacts of Lupron lasted for 14 months. Following treatment my PSA numbers fell back into the 0.02 range and life is good until one evening when I found myself doubled over in pain.
An initial diagnosis at a local hospital emergency center suggested I was dealing with pancreatic cancer, but after asking more questions and undergoing testing at a regional hospital I was told the diagnosis was actually non-Hodgkin’s lymphoma – apparently stage II and highly treatable.
Speaking up when things do not feel right
Some 6 months of chemo take place and I was declared in remission. The "cure" comes, but again only after questioning my dose levels during treatment and the discussing the many and significant impacts the initial chemo treatment had on my system. If you have not guessed by now, my many run-ins with cancer have taught me to ask questions and speak up when things do not feel right.
Little did I understand how important it was to ask questions. As part of my routine follow up blood testing after blood cancer, I casually asked my oncologist if it would be possible to include a post-op PSA test into the mix of lab results. He hesitated but agreed. For 2 years the results of that extra PSA test registered at 0.02. Then it happened my results went up to 0.30. I immediately scheduled an appointment with my urologist.
Just weeks later another test showed 0.42. Given the score I asked if it was a good idea to schedule a PSMA PET scan to determine if cancer was present in another part of my body. He agreed and sure enough the scan revealed a spot of cancer on my hip bone. With little thought he immediately recommend Lupron and I thought to myself, "This is not the right move at this stage."
A different treatment approach
I decided to contact the Smilow Cancer Center in New Haven Connecticut after reading an article on ProstateCancer.net about advanced prostate cancer treatments. Sure enough, the approach to treatment was totally different. Plus, I find myself in the hands of a 3-member cancer treatment team who suggest a new type of radiation for early-onset bone cancer. While Lupron would have simply slowed the cancer this new radiation treatment promises to put it into total remission.
Trust your instincts and advocate for yourself
My suggestion to anyone undergoing treatment for prostate cancer is this: Trust your instincts when it comes to treating this disease. Ask lots of questions. Learn to advocate for yourself. Do not be afraid to fire your medical team, and while inconvenient, seek out treatment at major cancer centers versus local well-meaning providers.
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