← Return to 50 and Full of Life. Need advice. TULSA or HIFU or what?

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Profile picture for cxracer @cxracer

@topf My local urologist stated "nerve sparing is possible ...", and that is NOT comforting to me in the slightest. Not probable or highly likely. Possible. I've talked to enough men, including my father, to know urologists don't care if they do or don't spare your nerve bundles. Eradicating the cancer by removing the prostate is their only priority. And I get it, to a point. We need to be our own best advocates, like always. I will say though, prior setting up my consult with Mayo, I had flip flopped from choosing EBRT radiation and hormone therapy to surgery, based on the likelihood I will develop additional cancer in my pelvic region within my lifetime, and I still may opt for surgery in the end.

Thank you for sharing. I'll cross the ED bridge if / when I come to it, but dang I sure do want to avoid it at all costs, if I have other options available, without taking future options off the table.

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Replies to "@topf My local urologist stated "nerve sparing is possible ...", and that is NOT comforting to..."

@cxracer Get a second opinion at Mayo with both, a urologist and a radiologist. The high volume of your cancer may mean that has a high likelihood of EPE. I believe that Gleason 6 cancer can grow locally outside the prostate even if it does not metastasize. These are two different things. If you end up with positive margins after surgery, you may soon need additional radiation. All these are things to bring up with your team.

@cxracer One very good sign is your low Decipher score of 0.11 as that indicates a less aggressive cancer. Opposing that is your young age which gives more time for cancer to come back even if it is not the most aggressive kind. As you have witnessed, an RP is going to have big sexual side effects and likely some incontinence issues as well.

If you go the radiation route to get spared of the RP side effects, but still want low odds of recurrence you will need to go very aggressive for the most comprehensive initial kill possible. This would be something like 26 IMRT sessions to the greater pelvic region and either an SBRT or HDR brachytherapy boost to the prostate. Going all in on radiation early though leaves you only with SBRT spot radiation and/or a salvage RP later if there is a recurrence. Of course, there are also newer ARPI drugs that could be used as well.

I was a 3+4 like you at age 67 but with a 0.81 Decipher score and I chose the aggressive radiation route and have never missed a beat in my athletics or sexual life yet. See my bio for more details.

@cxracer

I think that your surgeon is just honest and it is commendable.

My husband had RP and his surgeon also told him that until he opens him and looks through glasses (that are actually like a microscope), he can only say things that are probable but that in some cases surgeon discovers situation that is worse than scans indicate.

It is misconception that MRI and PSMA tell all. Also, biopsy is about half time correct. The other 50% is either upgraded or downgraded. Only when gland is out and examined in detail the true situation is revealed.

So, your surgeon can not say with 100% certainty that he will not discover some cancer effecting nerves and finding it necessary to remove part of them. Advanced imaging in robotic approaches (such as the Da Vinci system) allows surgeons to identify subtle visual cues like tissue color changes and vascular patterns that indicate if cancer has spread outside the prostate capsule.

All that said - my husband choose RP since both his surgeon and his RO advised him to do so. He recovered his full continence 4 mos post op and ED is recovering also and we did not even try Viagra (he is on Cialis for recovery purposes) .

Also, there is a set of patients that has urinary retention problems, scaring and even incontinence after RT. RT can cause fecal incontinence, proctitis etc. There is just no perfect treatment with no possible side effects now or later , unfortunately.

Yes, go for a second opinion or even third until you are sure of what you wish to do and than don't look back since the most important thing is - to DO something.

Wishing you the best of luck with whatever treatment you choose.

PS: If you decide to choose RP, do it in a Center of Excellence with the best possible surgeon you can find- one that performed thousands of those surgeries and ask him about his record - how many of HIS patients had ED and permanent incontinence after surgery. Also don't forget that recovery also depends of a patient ! Age, status of ED and continence before surgery, physical fitness, obesity, comorbidities, and willingness of a patient to do pelvic floor exercises and penile rehabilitation protocols.