Conflicting options - should I get a third?

My husband was on AS for about 10 years BUT his "surveillance" was flawed and he ended up with 4+3 and cribriform (aggressive) cells in one single core with IDC formation. For that reason he has to have RP and opportunity to have TULSA or focal therapy , or any other less aggressive therapy was missed, not to mention that even RP would have much better results with , lets say 3+4 gleason.

So, PLEASE if you decide to go on AS go to some big center that is specialized in cancer care and do your surveillance there. You might be just 3+3 gleason now but it is a cancer and you will have the best care in a big hospital center where the approach is multidisciplinary and where the best and newest machines are situated.

You should have MRI done yearly ADN transperineal biopsy every 2 years with MRI guided sampling. My husband had MRI every year but only one biopsy and that was a mistake !

You are very early on your journey but don't take 3+3 lightly ! It can turn into aggressive cancer in couple of years. Read as much as possible about PC and be your own advocate - unfortunately that is the only way to get the best possible care and to make an informed decision. We trusted urologist who turned out to be completely incompetent in the area of AS.

Forgot to say - ask for genetic testing of your cells (Decipher or similar). You want to know your risk level at this point.

Wishing you the best of luck and may your 3+3 stay that level forever : ) !

The Decipher on the biopsy is a big deal. I was in AS territory until that came back and it was correct, the pathology of my removed prostate showed more cancer than any test indicated and that I caught it in time before it became far more problematic. As a result I kept my nerve bundles and had zero long term side effects (no ED, no incontinence). Knowledge is power.

Yes, I agree and that is why I mentioned it. BUT, I think it should be done with every consecutive biopsy. After my husband had his first biopsy Decipher was not available at the time but some other test that checked for mutations and "risk" factor (I can not remember the name at the moment) and it showed very low risk, like "30 year low risk" of developing serious cancer. Well , in less than 10 years it became very serious with Decipher score 100 !

Hi Ph,
My husband was similar 64, fit and healthy etc, 3+3 Gleason (slow growing from biopsies) Pirad 5. AS was the recommended option by our health board. He didn’t want to have any type of cancer in his body so opted for the operation to remove it after much research. Fantastic recovery, but post op pathology meant he was upgraded to 4+3 aggressive cribriform which had already spread outside the prostate. (I’ve posted longer stories).
My husband is extremely happy he opted for surgery as he can have treatment now, but would have been beyond that if he’d just had AS, but I understand it’s overkill for many.
Good luck with whatever option you choose as only you can make a decision on which route you want to opt for.

Good luck if I had it to do over I’d opt for surveillance, wish I had done that past year has been mentally and physically exhausting after I chose surgery then they didn’t get it all so Radiation and hormone therapy which you don’t want if possible

So in hindsight, when recommended for treatment and having it, you would have chosen not to do anything but surveillance instead of treatment? I understand the mental and physical anguish, as I experienced those for the year I spent going through all the tests and preparing for treatment and all of that, but had I not done those things then I would be playing Russian roulette with my cancer. Perhaps I am mis-understanding your statement, were you 3 + 3 or very low risk 3 + 4 or something?

3/4 4/3

Thank you, everyone, for your thoughts and well-wishes. I will be getting a third opinion. There are no COEs close enough to make regular trips, but a local med school has a highly rated Prostate Cancer Program with urologists, oncologists, radiologists, etc on the team. They definitely offer Decipher - my current urologist never mentioned it; I learned about it from this group! Depending on how that appointment goes, I may switch providers.

I don’t understand why your urologist was so quick to want to remove the prostate. Removing it has life-long repercussions. Anything you do will have repercussions, so thoughtful research should be in order. If you haven’t had a PSMA Pet scan that is necessary! It tells you if any cancer has metastasized. Without that you can’t make a decision.

I thought you wrote Gleason 6 and later revised it? If 6, I’m with your oncologist who recommends AS. Even one of the commenters said her husband was on AS for 10 years. That’s 10 good years. And according to what I’ve read, his more recent diagnosis is probably an entirely different cancer that developed.