Diagnosed today w/ PCa. Seeking feedback w/ treatment I think I want

@mozir could you give me info on this surgeon?

I'm in the much the same boat. Omitting a lot of details, I am 74, Gleason 7 (3+4), Artera results favorable, but who knows how much faith to put in the AI approach. Two tumors, the largest is 30mm, 90% involved and cribriform identified. PET shows no metastasis, although the MRI a few weeks earlier had shown a lesion on the acetabulum. (That got my attention!) I suppose the PET has the last word on that situation. I want to salvage as much of my functionality during my remaining lifetime, so have opted for SBRT with a rectal spacer at Memorial Sloan Kettering. They can get a resolution of the radiation to a margin of 2mm, but there is a lot of sensitive and important (to me) tissue in the area. I suppose those who have a good recovery and no side effects don't post on a forum like this, but I would welcome any and all real world observations.

@jeff1963 . Three weeks ago I had a nerve sparing prostatectomy. Turning 66, was walking 20-30 miles a week proor surgery. Jeff1960, do you recall if you were exercise intolerant, meaning I can't walk over a block with out incredible pain radiating in my internal left pelic. BTW, how you doing today since this long ago post.

@kcman1960
The pain you are describing is not normal. One week after I had my surgery, I went back to work full-time. Had to walk a Fair amount between my car and offices.

I’ve heard from hundreds of people who have had prostatectomies and what you’re describing is not normal.

You should talk to your doctor about this.

Hi @kcman1960 If you are experiencing incredible pain, then please let your doctor know, that is not normal. Post-op I had some mild pain (really discomfort) following surgery that one Aleve per day resolved. I started walking again soon after surgery but avoided anything strenuous for the recommended timeframe (don't remember what that was, maybe 6 weeks). 8 months post-op and I am doing great, PSA was undetectable at 3 and 6 months. Can do anything I want. Wish I could say I was 100% continent, but am only about 98% continent and I'm okay with that, still making progress. No ED issues at all. But please let your doctor know about the pain.

You might not have to deal with ED or long-term incontinence if you have surgery. I didn't. Radiation ruined all of that. I had many months of bowel incontinence, which was the worst, urinary incontinence, rectal bleeding and brain fog after 25 sessions of radiation and 6 months of ADT. If I hadn't gone BCR after 2 years I would have considered removal a "walk in the park" compared to radiation. The sexual experience will change regardless of your treatment. Radiation can and will hit healthy tissue and nerves. The question is which ones? The answer is, you won't know until afterwards. Best wishes on your journey. Live today to the fullest.

@n227rv A good friend, age 75, had recent treatment at Sloan using HDR Brachy and 5 sessions SBRT.
With cribriform present you may want yo ask your RO if a brachy boost might be in order; cribriform can sometimes be resistant to radiation. Best,
Phil

@heavyphil
You bring up a really important point. When I attended a UCSF conference a year ago, they discussed the fact that radiation didn’t seem to be effective on cribriform. At meetings, I was going to they discussed the fact that surgery was probably best. Then about a year ago, the information changed, studies had shown radiation was recommended As the most successful way to treat cribriform.

Well, these two things sure seem to be a direct contradiction.

Ar Tuesday’s ancan.org Advanced prostate cancer weekly meeting one person with large cribriform Was asking for help on making a decision between surgery and radiation. As it turned out, he went to multiple doctors and they all recommended surgery. At the meeting, they said that that may be true, but that radiation has been found to be more effective.

And then you bring up the fact that maybe they need a boost. There definitely seems to be a contradiction here. Many Doctors are not following what the latest trials have shown. And it sure leaves the patient in a position where they don’t know what the hell to do. What you bring up sure seems like it should be what they are recommending..

Then you search AI and find out that they come up with this Mayo clinic forum’s comments about this as what should be done. Specifically I saw the comments that I made about surgery being needed. Weird!!

Must admit at this point I am not sure who is right about this. It’s very possible that both are right and both techniques work.

Diagnosed at 59 with Grade Group 3 in Dec 2025. Single incision RALP with nerves spared in Jan 2026. Continent in a matter of days. Still struggle with ED seven months out. Continuing penile rehab with very good progress. Use Trimix successfully for intercourse. Very grateful for this! Have had intercourse once without any meds. Progress is not a straight line. Orgasms are fire! Last uPSA <.004 Thanks God for good surgeon and good outcomes. 🙏🏽 Hope your treatment, whatever you choose, is successful my brother!

@jeffmarc Yeah, probably surgery followed by adjuvant therapy with ADT…the kitchen sink approach!!
Phil