Advanced Prostate Cancer
4,523 members4,361 posts

Salvage radiation worries

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.

16 Replies
oldestnewest

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

Reply

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

Reply

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.

Reply

Thank you Lutefisk. All good counsel to me as I explore my options. Your time is most appreciated.

Blount

Reply

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

1 like
Reply

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.

Reply

Thank you Skip47. I was not aware of the drop in survival rate once a PSA after RPS reaches .5.

That inspires me to move in a timely fashion. I am grateful for your advice.

Blount

Reply

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

Reply

Thank you Mark... more useful information as I make my plans.

Reply

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.

1 like
Reply

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.

Reply

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

Reply

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

Reply

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

Reply

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.

Reply

Thank you GARunner1. Most encouraging news.

I wish you good news on your PSA next week.

Blount

Reply

You may also like...