Sean's story: Know your history

I was in high school when my maternal grandfather passed away from prostate cancer. He was 66. By the time his cancer was detected, it had spread to the point that treatment was not possible.

Had the cancer been detected earlier, there would have been options and he likely would have lived a much longer life.

About six years later, a hospital in the Boston area announced it was offering free prostate screening. I was only 22 and therefore there was no reason for me to get checked. However, my father was 49, basically the age when it’s recommended for men to start screening.

He went, with no expectation the results would be anything but clear. That was not the case. He was diagnosed with an early stage of an aggressive strain of prostate cancer that required a prostatectomy. While in 1992 the procedure was common and had a high success rate, it was a major surgery with a substantially higher risk of complications and side-effects than the procedure today.

The weeks leading up to the procedure were tense, and because my father was the president of a small company, it was necessary to keep things under wraps to prevent any concerns about his health from affecting the business.

Fortunately, the surgery went well. It’s still shocking to think that had that hospital not conducted the screening, my father’s cancer might have gone undetected until it was too late.

Within a year of his procedure, his father was diagnosed with a slow-moving strain common among elderly men. He went through localized radiation treatment, which took care of the cancer, and he lived another 20 years.

Because of my family history, I learned way more about the disease and screening measures than a typical 20-something would. That history also led my doctor to start my annual PSA screening in my late 30s to establish a baseline and be able to catch any problems early.

In September 2018, I became aware of Movember and began participating in fundraising activities like the Distinguished Gentleman’s Ride. I wanted to raise awareness, encourage other men to get checked, and support research that could lead to better detection and treatment options for when I eventually needed treatment—because of family history, I always assumed it was a matter of when, not if, I would be diagnosed with cancer.

From the time I started annual PSA screening, my level was consistently in the 1.5 to 1.9 range. It was all smooth sailing until May 2022, when my level jumped to 4.8—triple the previous year’s result.

While 4.8 isn’t necessarily a cause for concern, it is when it is three times the previous level in a 53-year-old with a 100 percent family history.

When I received that PSA result, I was convinced my time had come. I was hoping it was a mild strain caught early, meaning I had a range of treatment options short of a prostatectomy.

Thanks to my father’s ongoing prostate cancer evangelism and position on the board of the Massachusetts Prostate Cancer Coalition, I had a wealth of connections and information at my disposal.

I started a dual-track process of being evaluated by a highly recommended urologist in Washington, D.C., and I entered a clinical program at the National Institutes of Health in Bethesda.

Five weeks after my elevated PSA reading, a retest showed the level had increased to 5.5. The urologist ran through the list of other possible causes of a rising PSA—inflammation, enlargement, BPH—and I didn’t have any symptoms indicating a benign condition. We scheduled an MRI and a biopsy.

I was crushed. I always knew it was a possibility and I had been expecting it, but that didn’t make it any easier. While treatment options are vastly better today than when my grandfathers or father had prostate cancer, there are still risks of long-term impacts to sexual and urinary functions. Like most men confronting a prostate cancer diagnosis, I was worried about worst-case scenarios.

One of the hardest parts of the waiting game was having to worry and “suffer” in silence. I told a couple of close friends and family, but I didn’t want to share it too widely because I didn’t want others worrying in case it turned out I didn’t have cancer. I wanted the answer.

I felt isolated. I felt the proverbial dark cloud hovering over me.

In August, I had an MRI that showed no indication of cancer. I followed that up with a higher-resolution scan at NIH, and that scan also came out clear. Also, my PSA level began to drop.

However, doctors were quick to note that there are still limits to MRI resolution and 20 percent of prostate cancers can go undetected by an MRI.

Still, that was a relief to know that if I did have any cancer, it was at such a low level that there were non-surgical treatment options.

Finally, in October I had the biopsy at NIH. The procedure went as smoothly as it could, and then I had to spend the next couple of weeks healing and waiting for the results.

Given that the MRIs were clear, and my PSA had been trending back down, I wasn’t completely surprised when the biopsy results showed no presence of cancer. After nearly six months of uncertainty and anxiety, I could finally exhale—for now.

I am back to my regular routine of a PSA test during my annual physical. And I now have extensive baseline data from the MRIs and biopsy.

That’s why I can’t stress enough the importance of prostate screening and education. It’s critical to know family history and risk factors to determine when to begin screening. Talk to your family. Talk to your doctor. Don’t leave anything to chance.