Prostate Cancer: My Salvage Radiation Experience

In 2018, I had a robot-assisted radical prostatectomy (RARP) to remove Gleason 9 prostate cancer. I was left with a very uncommon side effect that I could NOT live with. I got no help from my local doctors, and I had to research what caused it and learn how to fix it on my own. I talked to hundreds of people, some of whom were doctors. Many people have good results from RARP, but I STRONGLY recommend you carefully research your surgeon.

My cancer returned in less than 2 years with a 3-month doubling time. My oncologist recommended ADT plus 42 IMRT radiation treatments. Repairing the damage caused by RARP had to wait, but I continued to pursue it.

Before getting radiation

Before getting radiation, my oncologist scheduled an Axumin PET scan to make sure the cancer had not spread. Since I was struggling with PTSD symptoms from the RARP issue, the 30-minute scan was difficult. I felt trapped and unable to move. The claustrophobia was almost more than I could stand.

Before radiation they also did a scan to map out my internal organs. They tattooed me in 3 places, so they could use the marks to align me in exactly the same spot for each treatment. It was important that the radiation field was contained to a limited area so it wouldn't damage surrounding tissues.

What it felt like

Having radiation was not painful, and it did not take long for each individual treatment. My drive to and from each session took longer. I don’t know if it is normal, but I did feel a twinge of pain for a few seconds during one of the early treatments. It was a one-time event. Other than that, the only way I knew the radiation was on was from the sound it made.

I was given instructions to take over-the-counter products to promote regular bowel movements. I had to drink water about half an hour previous to each session to expand my bladder. This made me struggle to “hold it” when a treatment would occasionally get delayed a few minutes.

One such morning, I had to stop them after they had me set up and in position because I couldn’t hold it any longer. They let me use the restroom to release some of the pressure but told me my bladder had to remain full. It was then that they let me know I didn’t need to have my bladder so full. It would have been nice to have known that sooner.

I also experienced mild claustrophobia during the radiation process, but I usually closed my eyes and tried to think of something else. Thankfully, each session didn’t last long.

More bathroom trips

After about 5 weeks, I started having more and more loose bowel movements. This lasted for many months after radiation, but slowly improved over time. Three years out, I still have slightly more bowel movements than I used to.

My RARP made me have to pee about 4 or 5 times a night and more than twice as often as I did previously during the daytime. The reparative surgery for RARP in 2021 greatly reduced my bathroom trips, and I now have to pee only once or twice a night. After that surgery, I was able to sleep for awhile without wearing Depends.

Dealing with radiation damage

About 6 months after that surgery, I stared having a lot of pain in my crotch, which turned out to be from radiation damage. Was this from the twinge of pain I had earlier? I don’t know, but the pain was bad enough that I had trouble sleeping. When I was asleep my mind apparently could not discern that my bladder was full, and I started bed wetting again. This required wearing Depends again at night.

My PTSD returned worse than it was before. I managed to get a prescription for Gabapentin so I could get some sleep. Once they figured out what was causing my pain, they prescribed a compounded cream that helped to make the pain subside. This made it possible to discontinue the Gabapentin.

My incontinence seems to have slowly grown worse during the day, but not at night. I had to return to wearing one or two pads per day. That is better than wearing Depends 24 hour a day like I did after the RARP. I am not a doctor, so I can only speculate, but I think this is from not having a prostate and delayed effects of the radiation.

Still finding positives

I am still torn over whether prostatectomy should have been my first choice, or if having ADT plus radiation would have been enough. Dwelling on the past or “what ifs” does no good, and at some point I had to move on. Three years post-radiation, my PSA is undetectable. I have a grandson and another grandchild on the way. I hope to enjoy time with both of them for many years to come.

My RARP made my life worse in my ways, but there have been positives. I now have a lot of new friends that I met during my research and experience. I also now have an outreach ministry and am able to help others. Hearing the life stories from some of these people has occasionally brought me to tears. In 2021, I was able to help bring one person back from suicide. It was an experience I will never forget.