3 month follow up

Had an MRI before surgery then 20 snips up my butt , Gleason was 7 average mostly 3+4 and 4+3 so was told that’s intermediate as far as aggressive. My Dr is well known but yes his age is probably why he’s not a Robotic guy , he got an award as one of the top surgeons . I guess just bad luck they didn’t get it all

I just had prostate surgery on November 13, 2024, and they removed the whole prostate. Just want to talk to other people who been through this.

I'm 71 and had NS RARP in late June 2024 at Mayo Phoenix. At this point I'm continent and pretty much back to normal except for ED. I do have enough firmness for intercourse (but just barely) and I'm hopeful it'll continue to improve, but time will tell. How are you doing?

Why don’t you start a new set of messages? Include the information about your cancer like your Gleason score and any other information. Many of us have been through this, including me. The results are so wide ranging that One person’s experience really may not tell you anything about yours.

@retireditguy
Hay not a problem. As I mentioned the numbers get confusing and seems different labs have and give different numbers. I do not have expereince with labs that give numbers below the .1
I am not sure why some do and some don't. Guess it depends on the type machines and labs used.

What I read and understand that what a urologist and R/O are saying are goal numbers are very different for a person who had RP and a person who still has a prostate. Those numbers will be drastically different goals. With a person wiht a prostate getting a PSA level and a person with RP getting an undetectable level. Again I have no experience with RP, hormone treatments, side affects, PSA numbers, etc.

My R/O a UFHPTI set my goal at below one (1.0). Some get confused but I have a prostate so a number below one is my goal. I and others with a prostate are probably not going to get a non dectable PSA ever.

Those who have had their prosates removed have a totall different goal number than those with a prostate. And from reading post here that number to say is non detectable is not something I can say I know to comment on.

Then we get labs with abilities to give lower numbers or that is their program. Mine at Mayo Jacksonville PCP stated their lab does not list numbers below .1 I am not going to a period and the end of that sentence as can confuse readers of the number being given is .1 not something with a period at other end.

I see other labs give numbers below that .1 and I think that is very good information. But a undectable number (however a lab denotes that) would be goal for those with RP. A number like I was given which was below 1.0 Again watching perios is a good goal I am told for a person with still having thier prostate.

Before I had any problems with prostate (incresed urnination, etc.) my PSA was .75 Again watching period. PSA below 4.0 are considered normal but does not mean you don't have cancer. My PSA rose year after year since 2017 rising from the .75 to 3.75 over a 6 year period.

My PCP was and is a person who researches prostate cancer, treatments, and diagnosis and did not like the rising numbers and thus referral to urologists.

I do mot think you made the wrong decision….there isn’t one! If you went the other route you might have had some other issue which would have you questioning THAT decision.
IMO, you probably should have had PSMA before your surgery, whether it’s standard protocol or not. Six yrs ago I insisted - and paid privately- for an Auxumin PET, which was the best back then. Nothing showed outside the gland so I opted for surgery.
If something was outside, it would have been ADT and radiation all the way. YOU did not screw up, but I think someone else may have been remiss in your diagnostic workup - especially given your age.
As I said in another post, there are still many “good” oncologists out there practicing like it was 1980 - not 2025.

Afraid you’re right

@heavyphil @graybeard46

Great comments and helpful information heavyphil

My Insurance company (BC/BS) would only pay for a PET scan after primary treatment - not before. I argued that the scan was paramount in my decision to either do surgery or radiation. They could care less!
Not sure these days if the PSMA is approved only after primary treatment, but either way, I think patients should be made aware of its diagnostic value and then they can decide if they want to pay for it or not.

@heavyphil
My R/O after I got ordered Decipher and bone scan saying Medicare pays for them. My secondary insurance covered the co-pays of Medicare.

My second R/O consultation wanted a PET Scan done also. Again Medicare paid and my secondare insurance covered co-pays.

I agree with you the test you mentioned and I mentioned above should be done BEFORE and treatment plans are developed. How the heck can you know what to treat and how if you don't have these type test done prior to any treatment plan being decided