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.
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
Both excellent facilities, at the top of the heap, or near the top of the heap for cancer care. While salvage therapy has sort of a bad sound to it, not the case. Easy for you to get through it, and you should move quickly. It is to our benefit the PSA has been watched closely, and caught at this stage. You need to move before you get higher-don't want it to reach .5 or results from the salvage therapy drop significantly to around a 35% cure rate, where now you are at 95%. This stats are readily available, talk with your team, and move forward. Good luck. Remember as well not all facilities have radiation oncology, and although a brief daily treatment it is consecutive days, and you should consider convenient locations for your travel to and from the treatment-don't know where you're located, but snow/weater may play a part.
Good Morning Blount,
All things being equal, it may be worth a look at proton beam radiation in addition to traditional IMRT. The expense is higher, but if you have Medicare and it is approved, the out of pocket will be $0.
My current Med Onc recommends the University of Pennsylvania (Philadelphia) and I have had many friends go to Jacksonville to the University of Florida facility and rave about the level of professionalism and quality of care. Both of these locations are proton centers.
Best wishes. Never Give In.
Mark, Atlanta
W/ all the new scans that can show where the PCa is, I personally would not have SRT w/o one. Lots of blind SRT failures because that's not where the cancer was.
I am heading down the same route. Working with Sloan Kettering in ny/nj
Last PSA was 0.27. Unfortunately/fortunately my pelvic and full body 3T MRI were clean (they were taken at PSA 0.21). As others mentioned it is a bit of shot in the dark.
But I used the calculator and get 68% chance for 6 yr remission.
mskcc.org/nomograms/prostat...
So taking the risk. I am also doing 6 month ADT
What I saw was the more success has cut offs at 0.2 and below. Next is 0.2-0.5. Then it drops off
ADT added to success factor and I have a fast doubling rate. So chose it to try to freeze progression prior to radiation.
Best of luck to you.
Extremely helpful.
What do you think about Sloan Kettering?
You are obviously well read and informed informed on what we are facing.
Than you Emak
Blount
So far they are great. But I am early on. They moved quick. Within 3 weeks we had baseline tests and a plan.
I am on firmagon for ADT. It requires shorts in the abdomen area. Heard if it was done wrong could cause pain and discomfort. Mine went smooth. Tech was very well trained
Now we wait and see. Radiation will start in March
Cautiously optimistic. But SRT is last big durable remission chance.
I took the approach of going aggressive early
There are scans like GA 68 that might pick up .2 PSA. For me the doubling was moving quick. So went to shut it down with ADT
Good luck
And good luck to you as well Email 1. I may very well end up at Sloan Kettering.
Knowing of your journey is helpful to me as I evaluate options.
Blount
Had RRP. PSA undetectable for 17 months and moved to 0.3. Also concerned it would go past 0.5 so pulled the trigger. 3TMRI negative. 39 IMRT treatments ending in Mar. 2016 with total of 70.2 grays to pelvic bed and lymph nodes. 3 months monthly Lupron before and 3 months during treatments. 9 months post IMRT with undetectable PSA and no side effects from radiation. Another PSA next week. Wishing you good outcomes.
I am in the 6th of 8th week of IMRT after surgery January 4th and ADT and PSA is <0.05
Hi Blount. I saw this old Post. Just wondering where you ended up getting SR and what you experience has been like ? I hope you are doing well. I am considering Salvage Radiation with Dr Mychalczak. at Memorial Sloan Kettering He wants to start with ADT 2 months prior Thank You for your time Keith
Pleased to get your message and happy to respond. I did take the 33 proton salvage radiation treatments at Mayo Clinic in Rochester. It took seven weeks and I had some issues with fatigue and gastronomic problems. That said and my wife and I traveled a good bit and I worked out regularly which helped mentally and physically.
Against the suggestion of my radiation physician I decided to not to do ADT. I have a Gleason Score of 7, slow doubling time , no mets and I am 70. The side effects from ADT sounded pretty daunting for a 70 year old so I decided to take my chances. If I were younger I may have made a different decision.
Hope this helps. Feel free to get back with me if you have additional questions. I wish you good fortune in your treatments.
Thank You Blount. glad you are in good health. stay well and I may have some questions at a later date if you have time. Thank You !
I have time to help in any way I can.
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