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

Since you are a bike rider, this seat is supposed to help for people that have had issues with prostate cancer.

Bicycle seat that works well with AUS and prostate cancer patients
https://www.hugeoaks.com/products/hugeoaks-width-continuously-adjustable-bike-seat-comfortable-prostate-friendly-bicycle-saddle-for-mountain-bikes-road-bikes-city-bikes-exercise-bikes

@jeffmarc I just stepped through it again, and was rejected again. I assume it's already closed, because my answers clearly confirmed I have prostate cancer. I'll work with my Dr, and thank you for the bike seat recommendation.

@cxracer

It may be closed. I’m surprised they haven’t closed it down so people can’t try to sign up..

You apparently live in the USA so that shouldn’t be a factor.

I’ve contacted Them and will let you know what’s up.

@cxracer It looks like your cancer is low grade but high volume, affecting almost your entire prostate. Focal therapy might not be an option, but you could ask about TULSA for the whole gland. I was told when inquiring about that option that, like radiation, it makes surgery at a later date, if necessary, very complicated. So, there is a risk.

If your decision comes down to radiation vs. surgery, make sure to ask your prospective surgeon if he believes that nerve sparing will be possible. If not, your decision will probably tilt towards radiation.

I was diagnosed one year ago at age 51, my partner is 35. I also tried to avoid ED any possible way but opted for surgery in the end because TULSA or Brachy monotherapy seemed not to provide sufficient cancer control. My biopsy was 4+4 but I was downgraded to 3+4 in my pathology, with 10-20% total cancer volume and 20-30% pattern 4. Decipher 0.2. Biopsies can be very unreliable, which in your case may mean that, given the high overall volume, there may be more pattern 4 than what your biopsy revealed. I would also discuss that with your care team.

I had surgery last June. Incontinence resolved quickly, though more urgency is likely permanent. I still have complete ED and will start injections soon. I took me some time to accept these risk before deciding on treatment but once I got there I felt good about my choice. Worst case scenario is a penile implant.

@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.

This is NOT medical advice (because I'm not a doctor), but sometimes old-fashioned, imprecise approaches like photon-beam EBRT can be an advantage. Because the radiation spreads a bit beyond the prostate, it might also kill any isolated cancer cells that have escaped the prostate to (e.g.) the prostate bed or bladder neck, but haven't formed metastases big enough to show up in any imaging.

The downside is that in a small minority of cases, you can end up with permanent mild bladder and/or rectal irritation, like I did. But if I did have some undetected prostate cancer cells ready to start homesteading in one of those places, I don't any more.

When people have their prostates surgically removed and that cancer "recurs", it's because some undetected cancer had already escaped. There's a tendency these days to do salvage radiation after a prostatectomy, but sometimes that doesn't happen until your PSA starts to rise again, at which point the cancer has been multiplying quite a bit.

All of this is just to say that there's no single best solution that the OP's doctors aren't telling him about. Every approach has trade-offs. The important thing is to get to a major cancer research centre, have serious discussions with your oncology team, and understand what those trade-offs are.

@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
You could not be going to a better place for consultation than Mayo Rochester. I would asked the urologist, R/Os, oncologist you see there your questions and really express your concerns. They are the medical experts and have treated thousands of PC patients.

Being so young is much different than most of us and our age we started this journey. So your concerns are much more important to you at that age. Make those concerns known to your specialist you are meeting with. If still not sure then get second and third opinion.

Good luck. The 3+4=7 was my Gleason score also. I had 30 rounds of proton radiation but no hormone. Why? I had the Decipher test which came back low risk, and a PSMA which was negative. Did I do the right thing. I think so but I did do two consultation with two experienced institutions (Mayo Jacksonville and UFHPTI) and then discussed this all with my PCP to see what was best for me, my age, my concerns, what most important to me to make final decision.

Consult with Mayo is a great start. I did Tulsa at Mayo for my 4+3 in July of 2024. I was 65 at the time and only needed 30% of my prostate ablated. No evidence of disease at this point. As you will learn, none of our cancers are the same and we all have different perspectives/reasons for what options make sense for us. I was ok trying something new that offered me very little chance of side effects even if it does not have a long term track record. The early data looks good and I am happy with my decision. You can click on my profile if you want more info on my journey. If Tulsa is offered as an option to you and you want more info, don’t hesitate to reach out to me directly.