The Proton Therapy Experience – Part 1

For many, the summer of 2020 will not be a summer to remember. Countless schools, offices and businesses were shuttered due to the Covid-19 pandemic. By late summer, many jobs and, sadly, many lives had been lost.

I was lucky – I was retired and healthy, and was weathering the Covid storm pretty well. Or so I thought.

My new status as a prostate cancer patient

That same summer, I visited 7 doctors to comprehend my new status as a prostate cancer patient. Ultimately, I chose proton therapy to treat the cancer, and if you travel down the proton path with me, this is what you might expect.

After researching proton therapy, and luckily finding a nearby center, I scheduled an initial visit. Blood was drawn to determine a PSA baseline, and a return visit for a 3 Tesla MRI was scheduled. The 3 Tesla magnet is one of the strongest commercially available magnets, capable of very detailed imaging. That makes it a good choice for prostate imaging.

A candidate for proton therapy

As luck would have it, the prostate series is one of their longest programs. Mine lasted over 45 minutes, and due to the pandemic, I had to wear a mask the whole time. It’s not easy to control one’s breathing so the imaging is unaffected, but with a mask, it’s a particular challenge. Finally, I heard, “Ok, that was the last one” – the best words I had heard in weeks!

The MRI revealed two lesions, but according to the report, there was “no definite capsular extension of tumor.” With that, I was a candidate for proton therapy.

Cementing my decision

Finding that second tumor changed the game. It cemented my decision to forego active surveillance and seek treatment. To me, at age 57, allowing one malignant tumor to go unchecked would have been hard enough. Allowing two to go unchecked was out of the question.

The following weeks were filled with lots of insurance-company-required hoop jumping, but thankfully that all ended, and treatment was authorized. With the last hurdle cleared, it was finally go time!

Getting the worst part over with early

Next, the fiducial markers were implanted in the prostate. What a “fun” day that was! Two fleet enemas were required, one prior to leaving the house, and a second right before the procedure. After all of that, I assumed a fetal position on a table and had three markers “punched” into my prostate transrectally, like a biopsy. It was done quickly, but without anesthesia. It was truly miserable!

But the good news, which I didn’t yet know, was that I had just experienced the worst part of the entire proton process. It was all uphill from there.

Next steps

Five days later, I would have the “simulation.” In preparation for the “sim,” an empty bladder and rectum were required, after which I drank two bottles of water and waited about 30 minutes. I would soon become well-acquainted with that routine; I would do it before all 44 treatments. During a treatment, I realized the bladder and rectum should stay a safe distance from the prostate, and a partially-filled bladder and empty rectum help to accomplish that.

The Sim is done in a CT scanner and everything up to, but not including, an actual treatment is done, ensuring full readiness. Five “alignment” marks were placed, one on the outside of each knee, one on each hip, and one below the navel. Mine were sharpie marks covered with clear plastic stickers to help them last. The target amount of fluid needed in the bladder was also noted.

Full speed ahead

A second version of the Sim was done with the “balloon.” Often a partially-inflated balloon is inserted in the rectum prior to each proton treatment to help protect the rectal tissue. It was up to the doctor to decide if a balloon would be necessary. There was no disappointment whatsoever when I learned that the balloon would not be used!

Completing the Sim was the final preliminary step. Six days later, everything would begin. Driving home, the magnitude of the whole ordeal really hit me. This 57-year-old cancer patient was about to start daily proton treatments, right in the middle of a deepening pandemic no less! Was that really a good move? Or should I delay until the pandemic is over?

Damn the pandemic, full speed ahead!

Read Part 2 of my story.