Prostate surgery or radiation with ADT

Hi MLS63 -

Exactly one year ago (at the age of 76) I was just starting 28 radiation treatments while on ADT (Lupron).

My starting PSA was 20. After radiation it was less than .03 and has stayed at that level ever since. The ADT caused my testosterone level to drop from over 500 to less than12. I was scheduled to have a total of 3 six month Lupron injections but opted out of the third when I found (through research) that at my age my testosterone would probably be very slow to recover to pre-ADT levels and could possibly require testosterone replacement therapy. I thought why take another expensive injection to keep my testosterone low when it would probably stay there on its own. I have the typical Lupron side effects - weight gain around the middle, hot flashes, joint pain, low libido. etc. While I'm sure the Lupron along with the radiation knocked my cancer on its butt, I wanted my pre-Lupron body back. I see the Lupron as a necessary evil with the emphasis on EVIL. Two months after skipping the third shot I am still having the side effects.

About 6 months after completing my radiation I developed Radiation Proctitis. Even though I was assured that the radiation was well aimed and modulated to minimize any affects on surrounding body parts, my rectum was "burned" by the radiation causing chronic rectal irritation with occasional blood and mucous in the stool. I was prescribed Mesalamine suppositories to combat the irritation back in February. After using the suppositories for a couple of months my symptoms seemed to moderate. Only occasional signs of blood and nothing that affected my "quality of life." At my recent annual wellness check I related to my primary care physician that I quit using the Mesalamine. He told me to keep using it because the inflammation will always be there and he wanted me to stay ahead of it. A few days after restarting it I had the worst bout of blood and mucous in the stool than I ever experienced. It looks like I have developed "Acute Intolerance Syndrome" - a very adverse reaction to the medication. I'm not sure where I go from here. Stopping the medication (again) has cleared up the symptoms. Guess I'll be having some serious conversations with all my docs - urologist, radiation oncologist, gastroenterologist and primary care physician.

Based on the many stories found here we are all on a journey with many forks in the road. Best of luck on your journey…

Oldernow

You're welcome -

My urologist did not recommend surgery for someone my age. I was referred to a Radiation Oncologist who agreed that radiation was better at my age. No one mentioned the SpaceOAR during my consultation with the oncologist at Cleveland Clinic. I was told that my daily routine should include having a "full bladder" and an "empty rectum" for every radiation session, the idea being that the full bladder would push the empty rectum out of the line of fire from the radiation beam. The excellent team that got me through the 28 days of treatment often commented on what a good job I was doing with my daily prep routine. The radiation equipment was "state of the art" IMRT (Intensity-modulated radiation therapy) that allows higher doses to the prostate with a higher chance of controlling the cancer. Extensive pre-planning was used to shape the beam and intensity to minimize damage to surrounding areas.

Based on my recent research I have found that some people are more prone to developing radiation proctitis. Depending on the type of radiation you receive there is even a test called Prostox that can be used to help you decide if radiation may cause you future problems.

Regardless of the issues I am now having I would still proceed with radiation but with many more questions before it was started. I was unaware of this site before my treatment and regret not having the input of so many people on the same journey…

Oldernow

Hi,

It’s really your choice based on your health issues and consulting with your doctor team. I had robotic surgery at the age of 62 and don’t regret it. I have been left with minor ED and a stress drip now and then managed with a light pad every day. Put me in the bothersome category for both of my side effects. I hope I never have to live the effects of the various ADT drugs. Radiation and surgery have their side effects as others have stated above. You just never know what your outcome will be so get the best doctors + the best facilities to get the best results and lessen your chance of a disastrous situation. Once you have chosen don’t let your results slow you down, enjoy the things in life that keep you mentally and physically happy, adapt, adapt, & re adapt.

Dave 3+4

I can only speak from my experience -

I had a lot of fatigue issues during the radiation treatment last year. It gradually improved over the months following completion of the radiation. My oncologist said it is very common to experience fatigue during the treatment.

Now, a year after completion of the radiation, fatigue is not an issue.

Have you considered just going with the ADT? Or intermittent ADT?

You have given us very little info about your cancer; how many sites are cancerous, what is their Gleason score, how close to the edge etc. This makes it hard to offer advice about side effects etc.

Was active surveillance ever considered?