Concerned procrastinating will affect future prognosis

Posted by rad62 @rad62, Jun 16, 2023

After RP April 2019 Gleason 9 negative margins pt3a lymph nodes clear, BCR aug 2022 confirmed pet positive lymph node (SUV 1.9) PSA 0.22 was advised to wait and repeat pet/PSMA when PSA reached 0.4 to confirm and then treat with radiotherapy and 6 months
Repeated pet/psma April 2023 slight increase in postive Lymph node (suv2.4) no other changes, then offered posibility of a clinical trial or surgery. All doctors saying don't stress you have time to make a decision it's still in early stages. Now mid June PSA 0.31 ,I'm very concerned all this delaying is going to affect my future prognosis, as per the research the lower the PSA when starting salvage treatment the better.

Thoughts fellow travellers.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I am Gleason 9 had 13 months if ADT and Erleada and RP. The surgery and ADT sounded much worse than it actually was for me. Had no meaningful problems but sex life is not desired and is history for me. I think that I made the right decision. A gleason 9 aggressive treatment should not be delayed or taken lightly and I think aggressive treatment should be done, providing other serious health issues could effect the decision. I am in favor of being with my family and friends as long as possible. We need each other. Good luck with whatever you do

REPLY

Is the surgery being suggested by the health team to remove the lymph node? Have you researched and talked with your health team about ADT? Your screening is very robust with multiple PSMAPET in a short period of time. What clinical trial are they suggesting?

REPLY

I treated my G 9.
My research indicated that the "sweet spot" for salvage radiation and ADT was PSA between .2 - .4/.5.
Just completed IMRT radiation and 4 mos ADT tx.
I failed 1st 90 day postop PSA (.19) after RP and also PT3a, clean margins, seminal vesicules and lymph nodes. However evidence of EPE.
Best wishes with your choice and for good health.

REPLY

Man, the Gleason 8 or higher is aggressive. What were the two numbers? I would get someone else involved or have your doc confirm what his/her confidence stems from.

Get this book and it may help you ask the right questions.

Praying for your peace and a confident decision.

REPLY

Rad62: Did you get an opinion outside the group of doctors you were using?

REPLY
@edmond1971

Is the surgery being suggested by the health team to remove the lymph node? Have you researched and talked with your health team about ADT? Your screening is very robust with multiple PSMAPET in a short period of time. What clinical trial are they suggesting?

Jump to this post

I've received a few different opinions, surgery can only maybe delay adt and radiotherapy by a couple of years but I would have to pay €25000 as it's a private hospital, the trial is RT, ADT 6 months and with the posibility of apalutamide 6 months if selected.
I have decided just to go with my social welfare hospital and receive standard of care treatment, 6 months eligard with RT to prostate bed and pelvis with 45gy-62.5gy
in 25 sessions with sib boost and sequentially SBRT 33gy in 11gy x3 to the pet positive lymphnode.

REPLY

Gleason 9 RP, post
8week PSA < 0.1
90 day PSA O.2
PET PSMA clean
Per both Urologist/Radiology Oncologist start treatment 0.331
Started Eligard 2-3 year
2 months post ADT start
39 radiation treatments

Eligard side effects fatigue issues
Hot flashes
daily struggle

REPLY

Wow, I had to look up some of the abbreviations to figure out what everyone was talking about. Now I know so I can tell my story. I had high Gleason scores, two eights, read the book, second opinion from Dr Walsh, RP at Hopkins, clean margins, I was a happy camper for five years. Then my PSA went from less than .02 (undetectable) to .1. I called the doctor that had performed my surgery and he said that without a prostate you cannot have PSA and recommended I do PSA's for three months and if it increased, see a Radiation Oncologist. I did and subsequent PET scan indicated a small spot cancer spot where the prostate had attached itself. 39 radiation treatments and for the past five years, my PSA has remained undetectable. Oh yes, Dr Walsh didn't do my surgery his protege did and their look at my slides said my eights were actually nines and there was a discrepancy in the DRT'S that were done. that's why he wanted my surgery done there. Whatever happened to the digital rectal exam?

REPLY

Thanks for posting,as @vjlvpjalways posted similar RT treatment of 39 sessions ,I am wondering why here in Spain they are just advocating giving me 25 sessions total 62.5 Gy and 3 additional SBRT 33Gy in 3 sessions .
Seems in USA they support higher dosage and more sessions than that of Europe.

REPLY

Dosage adjusted to site targets mapped, dosage adjusted as per plan.

REPLY
Please sign in or register to post a reply.