Considering Tulsa Pro or Proton radiation (full gland)

Here is the National Comprehensive Cancer Network's recommendation for Grade Group 4 Prostate Cancer.
Also attached the NCCN's RT recommendations for all Grade Groups.

@clevelandguy Proton rad can definitely hit the bladder. I know because it hit my bladder. 5 proton sbrt. It can be minimized, but not totally eliminated. The gel rectal spacer helped me avoid any bowel issues, so far. Radiation side effects have a way of sometimes happening months or even years after treatment. I am nearing 5 months post treatment and still have urinary impacts. Hoping they go away.

To the OP, I would skip the TULSA and go for the radiation now. The recurrence rates for the TULSA are just too high, especially as it appears in your case.

@oldgreenpaint
Thanks for that. I was not aware you could get five treatments of proton radiation. I thought the SPRT for proton was experimental?

I was considering the 28 sessions with a spacer gel in the hopes that getting 1/6 of the radiation each time might lessen the effects on my rectum or bladder?

I am worried that the radiation of sex will show up that year 3+. And ED or incontinence issues will start negating the advantages of radiation versus surgery?

Incontinence is very rarely a problem with RT.

(I had proton radiation at UC 5 years ago.)

There’s no way to know why your 3+4 became a 3+5.
> it may have been due to better sampling of the MRI guided biopsy.
> the “5” may have been there initially, just too microscopic to see.
> they may have simply missed it (given that Gleason scores are educated opinions).

As for pre-existing bowel issues, Dr. Rossi has information about this (& proton) in his portion of this 2023 Mid-Year PCRI presentation: https://www.youtube.com/live/WTqPnSRYtW4
—> Starting at about 4:48:15:

As for the “downside of radiation seems to be in 2 to 3 years some of the same side effects start to appear as surgery” depends on how much radiation overshoot there is that hits otherwise healthy nearby tissues and organs. Taking precautions in advance and during treatments is absolutely necessary.

(Diagnosed with prostate cancer in April 2012, I was on active surveillance for 9 years, I had proton radiation at UC five years ago (April-May 2021): 28 sessions (@ 2.5 grays per session) + 6 months (two 3-month injections) of Eligard. I also used SpaceOAR Vue. I also was not a candidate for focal therapy, having lesions on both sides of my prostate.)

For me - after years of research - proton beam was the right choice.

Best wishes on your decision.

@oldgreenpaint
Proton radiation has a fixed length beam, sounds like something went wrong with your procedure. The beam length was not set up properly? The gel should have protected your bladder?

@brianjarvis

Lots of truth in your post. The fusion guided biopsies are so good at hitting dead center of “target” that I believe the core samples describe disease state much better than the ultrasound only guided biopsies. Literally shooting in the dark many times. The present treatment protocols are based on historically old data, relatively speaking. So an old school biopsy may have discovered G3+4 and a treatment plan devised, while in reality the old school biopsy may have totally missed some G4+4 or higher that would move someone into another treatment protocol.

I perhaps make my present condition sound worse than it is. I am on no pain control or Flowmax. Just one 25mg Viagra as a penile protector while the rest of the Firmagon wears away. (55 day half life so it will be a while). Many mentions of incontinence here. I’ve never had that problem. Zero bowel issues.

@clevelandguy I was treated at a Center of Excellence that told me up front that the risk of bowel issues was less than 2% and the risk of urinary issues was 10-20%. When I experienced my urinary discomfort I asked the radiation oncology nurse who was helping me if I was the Outlier. She said almost everyone will have some level of urinary issues. I asked if it was my prostate or bladder that was screaming at me and she said both. The med center was well schooled on how to control pain and mitigate discomfort.

I was VERY CAREFUL to eat, drink, defecate, and urinate the same way before for my Simulation and Treatment sessions. Did not move at all while on the radiation table. I think I did everything right, and so did the med center. Med center explained the theory of enmity rectum and full bladder was to protect SOME of the bladder, but not all of it. There is a reason that Prostox was invented. I am perhaps that reason.

My brother is in the mill now, and he is looking at 5 session photon sbrt spread over 5 weeks. I think that would be better than the five every other day that I did.

@clevelandguy
I have heard of multiple different issues after proton radiation. It appears no type of radiation is really Side effect proof.

@jeffmarc
Side effects from various forms can happen, but Proton by design should have a lot less because the beam does not go on to hit your bladder and rectum as X-ray type radiation does. Results can differ based on the experience of the radiology team using it. Always better to get a hospital network with excellent credentials.