Just joined, biopsy shows 4+4 (Group 4)

You have many options depending on the nature of the recurrence: focal therapy (e.g., cryo), brachytherapy, SBRT, and yes even re-radiation in some cases. More than likely ADT will be included. (Did you use a rectal spacer with your initial radiation treatments?) Prostatectomy would be your last consideration (just as it probably was with your initial treatment.)

It will be difficult to find a surgeon that could do a prostatectomy after having proton or photon radiation. There’s not much left of the prostate, Very few surgeons will do it.

If your PSA is rising, you do need treatment. Unfortunately, you did not say what it has risen to, and that could be very important. The pet scan did not find anything anywhere but in the prostate tissue? What was your original Gleason score? I would not doubt the Gleason found at John Hopkins. You could have it reviewed again by Dr. Jonathan Epstein at https://advanceduropathology.com/. He is a world renown expert at second opinions. He just gave a talk about them. You could review it here.
https://ancan.org/webinar-interpreting-prostate-needle-biopsies-in-todays-world-recording/
A Gleason eight should be on ADT for 18 months, But that’s not after a reoccurrence, that could change the guideline. You need to speak to a doctor about how you would manage your rising PSA. The usual thing to do is put somebody on ADT and an ARSI. That will stop the cancer from growing, probably shrink it, and stop it from spreading. Of course, if it’s only in the prostate tissue, the right surgeon might be able to eliminate it.

We obviously can't give you detailed information -- that comes from discussions with your healthcare team -- but you already know that Gleason 8 is high risk. While, obviously, that's not nice to hear, a different way to look at it is that you're very lucky to have found this risky cancer before it spread, and that getting treatment now (surgery, radiation, or otherwise) gives you an extremely good chance of long-term remission: that's effectively a cure, since the remission can last for the rest of your natural life.

I hope your treatment goes well, and that you feel well supported through this.

Best of luck!

Dr. Rossi has a lot of information about proton radiation in his portion of this 2023 Mid-Year PCRI presentation: https://www.youtube.com/live/WTqPnSRYtW4?feature=share
—> Starting at 3:38:45

(At about 4:53:00, he discusses options that might answer your questions.)

There’s a Proton Q&A session at the end of his presentation with these topics:
—> 4:25:00: Proton & Insurance
—> 4:30:45: Proton SBRT
—> 4:34:30: Proton & ADT
—> 4:36:55: Proton & Supplements
—> 4:39:00: Proton & Diet
—> 4:40:00: Proton & Repurposed Drugs (Statins; Metformin)
—> 4:42:00: Proton & Post-Treatment Side-Effects Urinary
—> 4:46:00: Proton & Hyperbaric Therapy
—> 4:48:15: Proton & Pre-Existing Bowel Issues
—> 4:49:40: Proton & Hydrogel
—> 4:53:00: Proton & Re-radiation

Hope that helps.

When I asked my MD Andersen trained RO the same question about a biological re-occurrence she pointed out what @jeffmarc said in terms of radiation and also that one of the focal treatments would be used, heat or cold.

@jeffmarc
First, thankyou for your kind response, Jeff.
To fill in a bit: Initial Proton treatment in 2020. My Gleason score at treatment was 3 +3. Nadir PSA was 0.54, but gradually rose. Last year, my first biopsy revealed only 5% adenocarcinoma in 1 core. I was told that because of radiation effect it could not be Gleason scored. I was then on active surveilance until my PSA rose to further to 2.5, which met the Phoenix standard of biorecurrence. Next was a PSMA/PET scan, which indicated lesion in right anterior midgland (NOT where 2020 lesion was) with no spread outside of prostate. Then the second biopsy recently, and suddenly I find myself in high-risk Group 4! I will try to get the second opinion from Dr. Epstein, thank you again!

Thanks so much to all who replied to my question, I am most impressed by this group!
I tried to provide more history in my reply to Jeff and right now am going through other reponses.
It helps to get as much information as possible, and to know that I am not alone in this.

@bens1
I am holding out hope that focal treatment will be possible for me, but have also read that ADT is likely, which I hoped to avoid. But hey, survival comes first.

@jeffmarc
Not news, but news to me, I just found out Dr. Epstein is no longer at Johns Hopkins, having been put on administrative leave amid misconduct allegations.
(Feb. 2024)

@billnumber6
There is a lot of controversy over why he left, and whether what they said is true. Supposedly, he preferred the advice of one doctor over another.

He did start his own business and that is where you get your second opinion from now.