SBRT: Every day or every other day; proton or photon
Thanks to everyone for their participation in this forum. Your comments and questions have been enormously helpful to me. I'm considering SBRT and trying to determine the answer to two questions: (1) if you have the choice, should you push to do radiation every other day (or simply not continuous days in a row) just to give your body a rest; and (2) if you have the choice (all things being equal) between SBRT with photon or proton machines, which is better? Thank you for any and all reactions
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Personally for radiation , I would choose low dose and more sessions.
I had IMRT 37 consecutive sessions (Mo - Fr) w/ short term ADT for persistent post-op PSA. All tx at Johns Hopkins.
And would do it again.
My total radiation dose was 66.6 gys; 1.8 gy per treatment session.
You are going to receive a similar total dose of radiation; just in different "strengths".
I didn't notice any benefit from 2 or 3 days w/o tx over weekends.
It is challenging to make decisions; treatment protocols are different with different ROs and are evolving. Proton was " hot" 3 yrs ago. IMRT has been updated. Different ideas on length and quantity of radiation and ADT therapy abound.
I chose a Center of Excellence and because I had confidence in my RO, I accepted his recommendations.
Best wishes.
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3 ReactionsDefinitely a YES on getting the PROSTOX test. My understanding is that there are actually two of them. One for short term SBRT and another for the 20-40 session treatments. I did not do it, had the five proton over two weeks and had what I would say was a lot of urinary discomfort. Mostly over it now 4 months post treatment. But it would have been worthwhile to know how the test scored for me. It may have pushed me into the long format radiation.
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1 ReactionI just finished 5 sessions of SBRT every other day for 10 days (MWFMW) at the Mayo in Rochester and was pleased with the result. I hesitate to try to paraphrase what my doctor told me about shorter timeframes. But it was something to the effect that prostate cancer responds better to higher doses over shorter periods. Perhaps someone can state that better or provide a better explanation.
Regardless though, the message I got from my doctor was that short course and long course radiation are equally effective. It might come down to what you want to do or the time you have. I had to drive an hour for each session so that definitely factored into my decision.
Didn't feel anything during the sessions. Started to get some symptoms the day it ended. A week after, feeling the need to pee more, but that is about it and to be expected and certainly not terrible.
The worse part for me was the anticipation of getting the SpaceOAR gel injected and I dreaded it for weeks. But that turned out to be nothing to worry about, they give you moderate sedation, and you won't remember or feel a thing (other than getting strapped into the stirrups).
I heard that exercising right before radiation makes it more effective as it oxygenates the tumor. I parked far away and ran for 15-20 minutes before each session. But you could also walk briskly or do the steps in the hospital too and probably get the same effect. I also adopted a FODMOP diet about a week before I started sessions. You don't want to be gassy or have things moving around down there. There was no need for pre-session enemas or anything for me.
Good luck.
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2 Reactions@bjroc
I have asked my DR. at Mayo which machine they are going to use on me. They haven't answered my question yet. I'm guessing it w/b the Varian Probeam or the Hitachi.
The biggest question for me is would I want the advantage of the MRIdian with 2mm margins or the Proton CT guided with the stoppage of rays at the prostate target? Mayo doesn't have Mridian I'm told. Studies show markedly better results in complications with bladder, urethra issues with MRIdian.
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2 Reactions@dribbles
If you have a location you can get to that has either proton like Probeam, or alternatively MRidian or MR Linac kind of machines you go to the one convenient to you. I mean I have a 6 hour drive for nearest of either, and will use Airbnb or something when I get set. So for me I am looking at just getting to any of those, we might as well go to the best we can get to reasonably and that may be how we make our choice. But given all the factors if one has both available, you would have to make a choice somehow. Mayo has Hope Lodge, which if I could ever get into Mayo proton I would try and stay there. I hope things are moving forward for you, keep in mind Mayo has all the best staff for calculating doses and all the rest of needed staff to make it the best too, so you are at a great place.
@johnt15 @bjroc
John, looks like I'm on the same track you completed. Do you know which machine they used. Was it a Varian Ethos photon or Hitachi proton . I'm very concerned about margins and not sure if I'm worried a lot about something I shouldn't.
What's the tradeoff for tighter margins of the Ethos vs the "no exit dose" of the higher margin Hitachi Proton? It may be they decide if your prostate is very close to bladder neck and they need the tighter margin of the Ethos.
Was that part of your discussion with your doctor? My Dr at Mayo Rochester doesn't communicate directly with me . The last email was from a nurse practitioner who assured me the Dr will do whatever is best.
My appts. for markers and Space Oar are already made for June and most treatments start within 2 weeks of that.
@dribbles
I completed 5 sessions (WTFMT) with the Ethos machine. My 3 month blood test following the treatment showed undetectable PSA (started w/17 and G4/5 in two lesions). I also was on Orgovyx 1.5 months before the SBRT. My RO had access to an MRI Linac and chose to use the Ethos. I'm now off the Orgovyx and will test again late this summer. With the Ethos, I also had a SpaceOAR and fiducials inserted. That surgery was a breeze with no side effects and the side effects from the SBRT were gone within 2 weeks. By far, the anxiety was worse than the treatments.
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1 Reaction@dribbles
This is where I was in 2023 before I tried Tulsa Pro, nurse practitioner of one of the Mayo Rad Onc docs just kept saying on don't worry every time I asked to schedule me with proton. Then it became clear there were no appointments on their Hitachi Proton system available, but she was going to put me in a cyberknife kind of treatment. It was a big step down I felt, I had specifically seen him to do proton and they were just farming me off to lesser stuff.
I learned you have to look at Mayo a differing way, and it isn't critical of academics or the way medicine is done, Mayo is kind of unique in the world. So first priority are going to be high cash paying overseas fly-ins, from oil rich nations, or elsewhere, they pay super high cash. Second but close to first, are a study they got tons of money to run, and you fit exactly the middle of the study. Not on the edge of a study, you are like made for the study. Mayo gets lots from those grants, but they still bill your insurance, so like double pay for them. After that are basic Americans with BCBS or good Medicare plans, and who don't fit exactly the middle of a study we just need something soon, they don't have to do tons paperwork insurance preferred - but for them is single pay, one insurance payment basically.
It is just a reality. Even though I requested, wanted, really made it clear 100 times in 2023 that I wanted proton, they could not schedule me.
Not long ago they bought the Varian Probeam (very good proton system) since I was there anyway. So maybe it helps, but that priority list I have still may apply. Just be aware.
@dribbles
Sorry, but I don't know the machine they used nor was there any discussion on which machine I wanted. I just chose Short Term SBRT and they took it from there. I do remember them talking about how precise the radiation is. And through the research I've done and videos I've seen, the SpaceOAR virtually eliminates the risk of rectal burns. There are couple great videos on the PCRI website about how radiation has greatly improved over the past several years and the benefits of the SpaceOAR. Check them out.
As for not communicating directly with your doctor, I dealt with the Nurse more as well. But I did schedule a few virtual visits with Dr Brissom to discuss things and ask specific questions that I had prior to my treatment. He was great during those visits. I suspect yours will be as willing to do so as well. The virtual visit was the way to go for by eliminating the need to drive there.
Good Luck!
@bjroc
At last month, Mayo Clinic monthly meeting they had a radiologist who said they had four proton machines now and were adding two more. This was in Rochester, Minnesota.