Friend Needs Help: I have a friend that... - Advanced Prostate...

Advanced Prostate Cancer

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Friend Needs Help

WayneSC
WayneSC

I have a friend that had a RP two years ago with a Gleason 6. His situation now is (quoting his text) “I went a year and a half after my 39 radiation treatments with undetectable...then last year it was right at .10...then six months later .40 and now six months later its .70. We are going to do nothing unless and/or until it hit 2.0....then we will revisit options. I am so tired of the drama I really just forget about it until next blood test. My main doc figures I may have another 20 years and will die of something other than prostate cancer.” He has not had ADT and I am really concerned for him.

What are the facts about his situation that he needs to hear. This man has plenty to live for. Thank you for your input.

18 Replies
oldestnewest

Send him this article:

pcnrv.blogspot.com/2016/09/...

I recommend he talk to a radiation oncologist.

WayneSC
WayneSC in reply to Tall_Allen

Are you saying having salvage radiation again is possible? His prior radiation was in the surgical site. I’m not sure whether he is an obstinate patient or has low quality medical care. He can afford anything he wants.

I sent him the link you furnished and a wake up call of a text message.

Tall_Allen
Tall_Allen in reply to WayneSC

Sorry. That was the wrong link. Maybe. It depends on whether the recurrence is in his pelvic lymph nodes or not. He should get an Axumin PET scan to find out.

Since he already had radiation treatment and his PSA is increasing, it could be indicated to obtain a PSMA PET/CT to determine if there are metastases. There are clinical trials for these studies.

clinicaltrials.gov/ct2/resu...

If he should decide to look into the Axumin PET scan that was mentioned, this link might help in "shopping around".

axumin.com/imaging-center-l...

Charles

WayneSC
WayneSC in reply to ctarleton

Many thanks my friend

My dad had a very slow rise in PSA for 9 years after his radical prostatectomy. After each blood test his urologist would send him a letter basically saying that everyone was fine and retest in 6 months. Wrong. Even though his psa was 0.9, he had had a biochemical recurrence. We did get him to an oncologist this year and he had a PSMA pet scan which showed a met on his spine. Cue stage 4 pca. Moral of the story is, he needs to see an onc and radiation specialist now. He needs all the tests.

WayneSC
WayneSC in reply to Mish80

Good luck with your dad. Not sure if it’s common but my Urologist dismissed my need for a MO also and fortunately I proceeded with my gut feel. I still see him every 4 months but let my MO direct my treatment.

Relax. My post rrp was 15.2. I am now 19 years out from my RRP had radiation 18 years ago. Now on Zytiga.

WayneSC
WayneSC in reply to rrs18

Congratulations on your successful treatment. The concern I have for my friend is the rate of doubling on his PSA.

My psa is now tripling every month.

WayneSC
WayneSC in reply to rrs18

Is your doctor concerned?

PCa in the pelvic lymph nodes is a common area for recurrence beyond the prostate bed but with Gleason 6 it’s a bit unlucky. Psa of 2.0 is around the optimal point for a ct pet scan to locate the mets. Back in 15 I found my lymph node mets with mri with contrast. It’s important to radiate all pelvic lymph nodes even if just a few are involved.

Denial is for fools. Get aggressive while the body is strong and the tumor burden minimal. See a medical oncologist that specializes in advanced prostate cancer, a real genitourlogical pro. Heed his advice. Don’t know about who his “main doc” is, however, well....... well in 2003, I quit going to my Urologist and hired two Radiation Oncologists for primary treatment. In eleven months, both said that I could find anyone to give me Lupron, but they would go a medical oncologist route if they were in my shoes. Steered me to a research academia guy for a trial of chemotherapy and ADT. The rest is history and I enjoy undetectables today.

Gourd Dancer

Congratulations on a well executed plan

Unless my memory fails me RT failure ( at least in the past) was not considered biochemical failure until 2 ng/ml above the lowest point post Tx ( Nadir) Recall reading recently that 1.2 ng/ml? is considered failure in other quarters... Doubling time is not great admittedly... other question.... to others.... is psa even high enough to be discerned by PET/CT

WayneSC
WayneSC in reply to Tommyj2

Is ADT therapy practical at this point?

Tommyj2
Tommyj2 in reply to WayneSC

I can only day that if _ I _ were the one with these numbers ( and I was) I would not be looking to jump on the ADT bandwagon just yet. BUT... I have been finding out ( too many times) from being on this group that many of my preconceptions are in doubt.... so I'd put it out there for the group as well.

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