time to decide and I'm stuck....

Greetings - other gents on this blog may recognize my comments, but I learned after-the-fact that the Gleason score is a very small tip of a much larger iceberg of prostatic pathology that can be going on.
Upon receiving my low-intermediate risk Gleason 3+4 = 7 with just 6-10% of cells being "4", I asked my urologist about "active surveillance" as one of my options, after he said that he was "glad we caught it (the cancer) early." But he quickly said: "you "HAVE" cancer...why would you want to watch and wait with active surveillance for two years...it is only going to get worse (extend out of the prostate, get into your lymph nodes, get into you seminal vesicles, etc.). He simply and firmly said: "I'm taking your prostate...you're having radical prostatectomy surgery." And...
I am VERY glad I did despite all of the still-unresolved, but very much improved post-op annoyances of urinary incontinence (98% recovered) and E.D. (still no erections 6-months post-op, even with 22 mg Cialis). I am "glad" I had the Radical Prostatectomy because my surgical pathology report was far more ominous. My urologist was a bit taken aback by what my Gleason 3+4=7 and only 6-10% of cells being "4's" showed in th pathology report. He said he didn't and wouldn't have expected all of the pathology based on my Gleason Score and cellularity.
I had Extra Prostatic Extension ("EPE") meaning the tumor has broken through/out-of the membranous "capsule" that surrounds the prostate; Surgical Margins meaning he couldn't remove "all" of the cancerous tissue; left seminal vesicle invasion but with no tumor or nodules...just presence of grade "3" cells; and Cribriform glands (your prostate tissue looks like Swiss cheese on the microscope slide in certain areas). All of that put me in the pT3b category, even though the lower intermediate risk Gleason of 3+4=7 could never have suggested all of my pathology (the hidden much bigger part of the underwater "iceberg").
With your PSA of 9.0 (I was a 6.1 ng/ml), and 8 of 10 biopsy cores positive for cancer (I had 9 of 12), it shows that your tumor is pretty extensive. Mine occupied about 31% of my total prostate (1/3 of my prostate was cancerous).
So...my suggestion to you is have the surgery, and pray for a successful procedure that leaves no surgical margins, and that the rest of the pathology will be pretty clean and uneventful. If you can get through it "now" without EPE, surgical margins, or invasion into one or both seminal vesicles (both are removed with your prostate), then you'll be much better off, than if you wait with Active Surveillance, only to see it progress to many bad things. IMHO, I would have the surgery. Either way, if you do have some of the unexpected pathology, at least your prostate, two seminal vesicles, and two vas deferens have all been removed. As my urologist said: "even if you have surgical margins, those cancer cells need blood supply to live and multiple, but the surgery removes the blood supply, so any cancer cells left in you "should" die. But of course, those cells can find their way to your pelvic floor muscles and lymph nodes that have very ample blood supply. So...that is why pT3b people like me have at least a 25% recurrence of our cancers within the first five years. Good luck to you. Keep us posted with your decision and outcomes. This is a good community... everyone cares because we are all in the same boat.

@kujhawk1978 hey Jayhawks fan from a tarheel. Can you elaborate on the treatments that did not work, and the ones that did?? Thanks

@retireditguy
Excellent post on your journey and why you made the decision you did.

@wpg215
You are not alone in your delima of what to do. I did not have surgery just radiation so can't give you my experience with surgery just radiation. I had 30 rounds of proton radiation.

Per my R/Os in giving me their guidance your Gleason Score are on the lower end of what is found. The 3+3=6 is really the lowest a Gleason score will even be given. Your 3+4=7 is what I had. But my PSA was 3.5.

Did your R/Os or urologist mentioned the Decipher test to you? It is a genetic test on the biopsies you have already had. It will give you a genetic risk level of your prostate cancer far more accurate that biopsies Gleason Scores which can be subjective from one pathologist to another (per my Mayo urologist, Mayo R/O, UFHPTI R/O).

It is why I had the Decipher test as recommneded by Mayo R/O. I had the same intermediate risk level you did originally but when I got Decipher back it was low risk and changed my treatment from radiation with hormone to radiation only.

The surgery expereiences will have to come from those who had RP which I did not. But RP is not a simple surgery and with any surgery it is far different that non invasive (surgical) treatments like radiation.

Everyone side affects on radiation will be different. Know that what one will have does not mean you will have. I had minor side affects. I had some minor fatique that went away weeks after treatment. I had increase in urination and urgency all improved over time. My last PSA (2.5 years later) was .12 Mayo Jacksonville lab does not give numbers belwo .1 as their lab considered that non detectable. My original PSA was 3.75.

Know that what you chose should be what you feel is best for you not what was best for someone else. For me the mental health of this was important and why I did even consider watchful waiting. Surgery is surgery and even if had been mentioned to me was not something I would have chose but that is me not a idicator of what you should chose.

Just know big difference in what you are going to experience with laying on a table having radiation done and feeling nothing to going on a table and havine your prostate removed. Let those who have had RP give you their reasons for doing that, their pros and cons, and then compare to those who chose radiation. Again what one will have issues with another will not.
Good luck on your decision.

@ksellers3

Determining if a treatment worked or did not for me is a function of the outcomes I was seeking in choosing a particular treatment.

The two that didn't work:

Surgery. The outcome was to be "cured." I knew the risks, incontinence, erectile dysfunction and the litany of risks associated with surgery. Still, I wanted to be "one and done...!

When the surgeon went over the pathology report with me, he was practically gushing with its "success" based on the pathology report and his observations and surgical notes. Keep in mind, he had done quite a few so had a basis from which to say so. Still. I asked myself, given the Mx, do they really know there's not distant metastases? The MSKCC nomogram said based on my clinical data there was a 30% chance I would experience BCR. 18 months later...failure.

SRT was the 2nd failure. The standard of care at the time was based on the theory that in patients with BCR the PCa cells travelled sequentially, starting with the prostate bed. Ergo, at the first sign of recurrence, not later than PSA of .3, radiate the prostate bed, it was a 2nd chance for the "golden ring, " a cure. Mayo had data that said this was not correct and ongoing clinical trials said in high risk patients the recurrence was already in the lymph nodes and treatment should radiate the prostate bed, WPLN and short term ADT. At my first jab and lab 90 days after SRT my PSA had jumped from .3 to .7, another thirty days it was 1.0, epic failure.

The next two treatments, triplet and doublet therapy o changed my outcome, knowing advanced PCa was not curable, my outcome was 3-5 years of progression free survival. That would enable time off treatment, recovery of T and advances brought about through medical research would provide more imaging and treatment choices.

My break from triplet therapy as I said was almost five years, outcome achieved. We're at 18 months now after doublet therapy so outcome not yet achieved but hey, it's been a good 18 months.

That's why I say when deciding on treatment discuss the outcome you are trying to accomplish with your medical team. As an example, those who wish to avoid ADT, is MDT in play?

Kevin
RCJH!

@kenk1962

This is very good point- I forgot about this factor !
It was the opposite situation for us.
RO told my husband that his lesion is very close to rectal area and that there might be some higher level of toxicity involved with radiation so close to rectum. It was just one more factor that help us decide to go with RP.

@surftohealth88 Makes sense. Looks like you are making a wise decision.

@wpg215, how are you doing? Have you made a decision? What criteria helped you (along with your cancer team) decide what is right for you?