My Prostate Cancer Recurrence Story: What I Learned From Getting It 3 Times

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 doctor initially dismissed warning signs of prostate cancer

My general practitioner (GP) had previously assured me that since my PSA score was under 3, there was zero possibility of prostate cancer. He confirmed his observation following a digital exam and not finding anything that felt suspicious.

He suggested my prostate gland was a bit large. But he said it was in the "normal" range for a 69-year-old guy. He had been treating me for an enlarged prostate for several years.

Some concerning things had happened during that time. 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 doctor was not concerned. I apparently had not reached his referral trigger of 3.1 to see a urologist.

A second opinion led to my diagnosis and treatment

I questioned the wisdom of waiting and at one point asked for a referral for a second opinion. 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 something. It the presence of a previously undetected lump on the back side of the prostate gland.

After a biopsy and scans were performed and I was diagnosed with prostate cancer, I was given a choice. I could do 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.

Rising PSA levels help reveal a recurrence

Five years after 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. Life was 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. It was apparently stage II and highly treatable.

The importance of speaking up when things don't feel right

Some 6 months of chemo took place, and I was declared in remission. However, it was only after I questioned my dose levels during treatment and discussed the many 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. He hesitated but agreed.

Testing reveals the cancer has returned again

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.

Sure enough the scan revealed a spot of cancer on my hip bone. With little thought he immediately recommend Lupron. I thought to myself, "This is not the right move at this stage."

Instead of jumping into treatment, I got another opinion

I decided to contact the Smilow Cancer Center in New Haven Connecticut after reading an article on ProstateCancer.net about advanced prostate cancer treatment options. Sure enough, the approach to treatment was totally different. Plus, I found myself in the hands of a 3-member cancer treatment team.

They suggested a new type of radiation for early-onset bone cancer. While Lupron would have simply slowed the cancer, they said this new radiation treatment could promise 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, consider seeking out treatment options at major cancer centers versus local well-meaning providers if possible.