Next steps.. Thirteen months ago I had a radical prostatectomy.
Current psa was negligible three months after the operation and is now .218. My doctor is considering salvage radiation. Has anyone had experience with Sloan Kettering or Mayo in Rochester with salvage radiation? I am a healthy 67 year old with good genes but have real anxiety about this next phase of treatment. Any help would be most appreciated.
You don't say where you live, but you are thinking about being treated in Rochester or NYC? Nice to have flexibility of location for a treatment that can take 5+ weeks (every weekday) - plus makeup days for those missed due to bad weather or illness.
13 years ago, I didn't have that flexibility. My main concern was choosing a radiologist from the local options. At that time, I read how important it was to go to an "artist". If that doesn't induce anxiety, I don't know what does.
I doubt that is a concern these days, with better imaging tools.
I went with the recommendation of my urologist. All of the men with PCa I met in the waiting room were with another radiologist. The wisdom of the crowd? No, they wanted a man. I stayed with the (female) "artist". LOL
The other radiologist certainly had more PCa cases than my doctor. Did that automatically make him the better choice? I haven't lost sleep thinking about it.
The advantage of local treatment (within an hour's drive or so)? In my case, the ability to have a nap when I got home. It can be tiring. And being close to a toilet. Radiation proctitis set in during the second week. Might not happen to you, but I was glad to be treated near home.
Best, -Patrick
Thank you so much Patrick. I live in a rural southern state without great health care so anywhere I go I will have to be there for the whole time. Since local care is not a decent option I thought I would go where I could get the best. Mayo and Sloan Kettering keep coming up as the best options
Your comment about having it done 13 years ago is reassuring as well. Your decisions for treatment must have been the right ones.
Best to you Patrick
Blount
Hi, I’ve been down the salvage radiation road in circumstances quite similar to yours. The radiation targets only the area where the prostate used to be. It’s very possible that you may have micro lesions elsewhere that are too small for scans to pick up. You don’t say anything about whether you have had further biopsies of the surgical bed. I’d suggest you talk to your surgeon about that. If the biopsies are negative for microscopic cancer lesions it’s unlikely radiation will help. As far as centers go, if you can afford it I’d recommend a visit to Johns Hopkins for a second opinion. The centers you mentioned are great, but JH has kind of been the leading light in prostate cancer for many years.
Thank you Lutefisk. All good counsel to me as I explore my options. Your time is most appreciated.
Blount
One of the best ROs anywhere is Dr Dattoli in Sarasota FL. All he treats is PCa. And his patients come from all around the world. You can call for a free one hour phone consult.
Bob
How did they treat your proctitis? How long did it last?
It wasn't really treated. I had steroid suppositories during radiation, but they didn't help.
It was really bad for a year. More bearable for another year. And then I had good days & bad for a while. It's been 14 years since the radiation, & I long ago stopped thinking about where the public restrooms were on the route I was about to take. & the restroom dreams (nightmares) have stopped (LOL).
-Patrick