← Return to Gleason 6 Decipher 0.64. Photon, proton, AS, TULSA?

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@robertov

Thanks jc76, I thought only photos were left. I’ll immediately call for a decipher test. The only treatment is that I was put on Orgovyx because I was leaving for a few months, with treatment to follow on my return.
Gleason 7 can be 3+4 or 4+3. The first number says what the predominant cancer cells look like, the 2nd is the 2nd most common. A 3+4 says most cancer cells look like normal prostate cells and is considered “intermediate favorable” (Grade group 2). A 4+3, says the predominant cancer cells are more aggressive and is considered “intermediate unfavorable” (Grade group 3).
Note I’m parroting what I read.

I ruled out surgery (personal decision). My 1st RO said IMRT. He believes he can cure me. On my 2nd opinion I was offered Proton Beam either 5 fractions or 28 fractions. The RO suggested 5 fractions would be fine.

The pros/cons of both is what I am trying to discern. It just seems sensible that protons with a lower energy profile going in and then stopping at the cancer would be a good choice. But how do they know exactly?
It also seems sensible that lower doses should do less damages, although studies say that yes, but you recover quickly from the high doses.
Honestly I’m wavering. The Protons are offered at a CofE 3 hrs away. The IMRT is 5 minutes from my house and claims to have more modern equipment than the CofE.
Have read/seen Canadian and US conferences and studies but am leaning heavily on hearing from others here. Phil has been helpful, Marc and Think-Feynman have really been helpful.
There you have the whole store 🙂

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Replies to "Thanks jc76, I thought only photos were left. I’ll immediately call for a decipher test. The..."

@robertov
With so much information out there and getting different perspectives it can be hard. My first consultation was at Mayo Jacksonville and could only offer photon. My Mayo PCP asked me to consider getting a second opinion at UFHPTI which has been doing proton radiation treatments for almost 20 years.

PCP was at Mayo had been doing a lot of research on prostate treaments so he could be knowledable recommend to his patients. I decided on proton thinking if I could do anything to help lesson the damage to surrounding organs and tissues (proton) I was going to do it. My PCP concurred best decision for me.

There has been a lot of research on photon and proton radiation. UFHPTI was given a 25 milliion dollar federal grant to study this long term. I am part of that research program.

Photon radiation treatmens have been advanced and are excellent. The success rate for both radiation treatments are bascially the same.

My UFHPTI R/O did not like to do the high dose saying his research was showing increased degree of side affects. My Mayo PCP said the same with his research. It make sense since higher dosage more damage but then it gets over quicker and healing process would start sooner.

I got 30 rounds of proton radation that was given to me over a 7 week period. UFHPTI went through a complete upgrade of all there gantries and equipment. It was like going to star wars. I can say they are outstanding professionals, courtesy, and the staff is great.

They offer a great information packet free for asking. It contains tons of research on photon and proton radiation, two books you see mentioned (one is the Walsh Book), and thier complete treatments plans. Absolutely no pressure to come there. They are all State employees and are salaried.

They get so many referrals from other medical facilities (Mayo Jacksonville is one) especially for children when very specific radation area must be treated. One side of the complex is for children only with great rooms for them to play, recover and wait.

Everyone is going to be different in how the respond to radiation. Some will have minor side affects and others will have significant. Pros and cons. It is the long term damage done to other tissues and organs that is the difference between the two. With proton it is not going to continue through body like photon. Some of long term studies will show if there is significant risk of additional cancers and damage from side affects of photon versus proton.

My Mayo R/O, UFHPTI R/O and my Mayo PCP that the success rate of both are the same.

One other point to add in terms of radiation. My salvage protocol traditionally called for 39 IMRT sessions. However, research showed equal results with 25 sessions at higher doses and SE’s equal for both groups after 6 months.
So perhaps a bit more urinary/bowel in the 25 session cohort early on, but then dissipating and being equal to those men in the 39 cohort - who also had symptoms BTW.
My SE’s were minimal - 2 weeks of mild diarrhea and actually, improved urinary function.
So your SE’s from 5 treatments, at higher doses than IMRT - even if it’s proton - are probably going to be greater but it is impossible to know how much greater or if you’ll even have them at all.
Phil