Radiation Oncologist Appointment

Had appointment RO at MSKCC today. Takeaways...

- it is highly unlikely that my PSA will stop rising
- I don’t have to treat now but I will eventually need treatment
- he thinks there is an 80% chance that PSA is coming from a few cells left in the prostate bed, based on the very slow rate of rise
- he generally includes a 6 month course of HT. Some men prefer to take their chances and pass on HT, and in those cases he will treat and abide by the patients wishes. In my case, at a PSA of .068, he would be very comfortable with SRT alone. BUT if I waited to treat and we got to a PSA of .1, while he would still treat me without HT if I wanted that, he would be less comfortable.
-chances of long term side effects revurinary or bowel function, less than 1%. His exact words. However he did say, 30% chance of some decline in erectile function, which usually can be fixed with viagra/cialis.
-treatment would be 72 Gy’s over 40 treatments (fractions?)

I am going to sleep on it. But I’m inclined to, and I probably will, plan to do another PSA mid July. If it’s up, I’m pulling the trigger. If it’s stable or down, I’ll wait and retest in a month.

Also need to find out if Medicare will cover at these low levels.

Ken

Prat, does the RO always recommend the HT for G7 patients, or just when it's SRT? I seem to recall there's data that shows no benefit for adding that for G6 and G7s, but then maybe that just goes for initial treatment.

Prato,
Don't want to complicate things, but with your PSA unlikely to go down, why run the risk of it being above .1 or near that by the time you actually start treatment? If your RO is comfortable with no ADT below .1 and with your concerns about ADT why not just go for it if that's the way you're leaning anyway? Having lots of options is the blessing and the curse with this disease. Best of luck on what ever decision you make.

Tom

Tom, I think I’m just trying to give my PSA every opportunity to stabilize before hitting it. Or maybe I’m in denial.
But in any case, I’ve thought about that, and I might go that way, I need a few days to let this whole sh!tshow sink in. Still can’t wrap my mind around it, but I will. I have to admit I’m getting a little depressed now that it’s closer to reality. I thought I was cured. Foolish thought.

Rich, thanks for the support, it’s very much appreciated.

Thanks Larry. I don’t plan on doing ADT. (See RO meeting takeaways above). But yeah I guess I’ll be posting in your thread soon.
I have to admit, I’m wondering if I should consider doing adt even though RO says he would do it but is comfortable not doing it. Maybe I should just hit it as hard as I can.

MSKCC uses Firmagon, not Lupron. They say it knocks down testosterone faster.

Ken:
The decision is yours. Good luck.
Prediction: Ken does a PSA in July. Result is 0.069.
Will he really pull that trigger? The agony continues!

Mel

Ken, I think you have a good plan in place. Personally I think I would take the 6 month HT as well if pulling the trigger, i.e. why not hit it hard if you're going to hit it. That may or may not be good science but it's what i would do. But, I would also do what you are doing now...deny and hope for a little longer!!!

Mel, good to see you posting again...you are still a sh!t disturber and a gambler! I'll take your bet with a glass half full prediction of a slight drop in PSA. Will you give me odds on that?

Jim

Best of luck Pratoman.

It is a slog, but you will get through the SRT.

SP is right (again), 40 treatments at 1.8Gy / treatment - with the first one a simulation - same process, no radiation = 70.2 Gy.

I did 39.

Rob

@Everyone, thanks for the comments.
@Mel, you should be friends with Garyi
@Dogdays, no they said once a month Firmagon shots, thats it.
@Hogo, Decipher result .12? and such pristine pathology? And still your PSA is rising? Geezzz.

I emailed the Radiation Nurse last night through the patient portal telling her my plan and asking one or two questions about it. She emailed me back today, saying...

"From what I am seeing in your consult note, Dr. Zelefsky wanted to repeat the PSA in August and continue to monitor until PSA reaches 0.1, at which point reconsider treatment with external beam treatment. I have also forwarded this message to Dr. Zelefsky so he is kept abreast of all your concerns and questions. "

Thats not what i heard, nor is it what my wife heard. So now i am really confused. I asked for clarification

Pratoman said...
I emailed the Radiation Nurse last night through the patient portal telling her my plan and asking one or two questions about it. She emailed me back today, saying...

"From what I am seeing in your consult note, Dr. Zelefsky wanted to repeat the PSA in August and continue to monitor until PSA reaches 0.1, at which point reconsider treatment with external beam treatment. I have also forwarded this message to Dr. Zelefsky so he is kept abreast of all your concerns and questions. "

Thats not what i heard, nor is it what my wife heard. So now i am really confused. I asked for clarification

Medicine is an honorable profession indeed.

I'm being told that doing another psa in August and then revisiting the idea of treatment is a reasonable course.

Thanks PDL. I’m going to follow RO’s suggestion and wait until August. Actually probably till late July. I’m thinking about doing the HT but not sure.

Tall Allen suggested I ask my surgeon to find out what % of my (3+4) was grade 4 cells. I’ve been trying but having a hard time, the follow up on the part if the surgeons NP’s is terrible.
I asked Zelefsky how much importance there might be in that data if I got it. He said that it’s probably not so important as to the question of whether to proceed with SRT, BUT, it might help inform how helpful ADT would be.

So my plan is to retest end July early August, see RO again, and in the meantime tomorrow I’m going to put a full court press on Surgeons office to get me that data. If I hve to I’ll email the pathogist directly, I have his email from an email he sent that was forwarded to me a month ago.

After that, I’m going to forget about this fir the next 8 weeks.

Actually I think he can garyi...unless he is reminded threadly of his lack...Prato is getting bored with the whole process...really just wants things to be the same as things were before... so he can get on with his life of course...this is my hope for him and I believe he will succeed...rip the band aid off Prato...your approach to things is great for a showman...are you a showman...it is entertaining...Im a showman....without a proper portfolio...the last thoughts are after thought as I reread one of the later posts of which you deftly give all to everyone and yet the gift is never really ever opened...is it?: What is Prato going to do next...??? Hey like I said...Im a showman too...