Recently received prostate cancer diagnosis: need a second opinion.

I've seen the same studies suggesting that proton vs photon radiation makes no difference in overall survival. Sometimes you want the radiation to spread a bit (photon) to catch any undetected cancer nearby, and sometimes you want the radiation to be very precise (proton) to avoid damaging healthy organs.

Strong candidates for proton radiation are children with brain tumours, because you don't want to damage the healthy parts of their brains, and they may have to live with the side-effects for 80+ years. But many other patients get it as well, including some with prostate cancer.

Disclaimer: I'm not a researcher or medical professional, etc. etc., and you don't even know my real name, so take what I write with a big grain of salt.

You have hit on some important differences. This 2023 study confirms what you are saying but also mentions that there is no difference in clinical outcomes for prostate cancer patients, but, they do say that more studies need to be done. See below

This review has presented currently available comparative clinical outcomes between proton and photon therapies for several cancer types. Overall, passive scattering proton therapy shows similar clinical outcomes to intensity modulated photon therapy for prostate, lung and esophageal cancers, while active scanning proton therapy appears to result in a decrease in certain radiation-induced side effects as compared to intensity modulated photon therapy for head and neck, thoracic, craniospinal, and pediatric CNS cancers. However, the evidence is not definitive and further demonstration of the clinical benefit of proton radiation therapy will depend on the findings of ongoing and future comparative randomized clinical trials. In the meantime, further development of beam delivery and imaging techniques is necessary to fully take advantage of the dose shaping capabilities of proton radiation therapy and achieve its full clinical potential.

@jeffmarc
We have to be careful what we post.
I did not post that there was a difference in treatment succes of proton and photon radiation. The actual studies done on proton and photon radiation showed that the success rates for treating the cancer were identical. This was echoed by my PCP, and R/O at Mayo and R/O at UFHPTI.

What I posted were the possible side afffects difference between photon and proton radiation. This is not my opinion but information provided to me by Mayo, UFHPTI and other sites researching side affects of proton and photon radiation. Both will have secondary radiation damage the differennce is possible degree and if significant. My PCP states leaps and bounds have been made to improve photon radiation treatments to reduce the damage to surrounding organs and tissues.

Photon radiation passes completely throught body proton radiation does not. It stops as a predetermined spot and does not proceed out the body like photon radiation. Having radiation proceed past your prostate can possibly add to radiation damage to the tissues and organs beyond your prostrate. This is the differences in the two types of radiation not their succes rate.

My PCP at Mayo Clinic echoed this information when he was going over my options for treatments and giving me the pros and cons of each. He is doing a lot of research on protate cancer treatments as he says he is dedicated to be better source of information for his patients. The same information on photon and proton radiations was briefed to me by R/O Mayo, and R/O UFHPTI.

UFHPTI, Mayo Clinic, Cleveland Clinc, etc., now provide proton radiation treatments. Until recenlty proton was not widely available. Mayo Jacksonville does not offer proton radiation treatments only photon. They do refer patients to UFHPTI that need a more controlled radiation treatments like eye cancer, brain cancer, etc. Mayo Jacksonville is building a new cancer center that will have proton radiation treatments.

I was briefed at Mayo Jacksonville by my R/O and my R/O at UFHPTI that radiation damage to colon is a common side affect that can and does lead to some rectal bleeding. Radiation damages the blood vessels of colon and when new ones are formed they are very suceptible to bleeding but eventually become stronger.

Well, its 6 of one, half dozen of another. True, the protons may ‘stop’ at a predetermined location, but is the technology really there yet to know where that is?
CAT/MRI are pretty precise, but what if that half millimeter or so (forget even the microscopic level!) past the stopping point has cancer cells??
Yes, the photons ‘may’ cause more damage but NO treatment comes without risks; and if those risks don’t outweigh the risk of not killing ALL the cancer, I would go with that one.
Just MY opinion and what works for ME.

IMPORTANT : Did you get a 2nd or 3rd Opinion of your biopsy ( pathology ) Gleason score . ?
I did -- and they changed . It's critical to establish your true Gleason Score - It defines your treatment options more precisely. A 2nd or 3rd opinion is common and recommended by the worlds top Urologists . Also recommended in Dr. Patrict Walsh's book " Guide to Surviving Prostate Cancer " - This book is a must read and money well spent .
DO NOT RUSH INTO A TREATMENT YOU WILL REGRET LATER -- EDUCATE YOURSELF ON ALL YOUR OPTIONS . A Radiation Oncologist will want to Radiate - A Urologist will want to perform surgery etc . A surgeon never recomment treatment - They want to cut it out - It's their profession .

A followup to my post re : a 2nd and 3rd opinion of your Gleason score results .
At your age , same as mine . Research your Focal Therapy options before considering Radiation -- These are less invasive , offer a same day treatment and quicker rocovery with typically less side efffects .
HIFU , NanoKnife, TULSA PRO , Cryosurgery ( freezing the cancer leison ) . There are others e.g. Immunootherapy .
I have mmany friends and associates 70 years plus who electted to have Focal Therapy -- All are delighted with the results .

I also wanted to state get a second opinion on the biopsy. They told me I was 4+3 Gleason 7 after the biopsy but we sent it out and it came back 4+5 Gleason 9. That was a big difference.

@heavyphil
The technology for proton radiation is extremely precise and much improvements have been made on initial gantries and treatments. UFHPTI just upgraded all the radiation gantries and treatment room to the latest technology. When you go there the control room and gantry treatment rooms are something out of star wars.

Mayo Jacksonville, because it does not have proton radiation just photon radiation treatments, refers many cancer patient in need of precise radiation treatments to UFHPTI or arranges to go to Rochester or Phoenix for proton.

When I was going to UFHPTI I was really depressed seeing so many children. Patients come there from all over the world and every state in the USA. UFHPTI has been doing proton radiation treatments since 2006.

The two books every one mentions on MCC (Walsh is one and another I think is surving prosate cancer) are given free to patients seeking UFHPTI information. They send out a huge packet with those books and tons of information on their treatments and researh. UFHPTI received a 25 million dollar grant from U.S. Government to do long term study on proton and photon radiation treatments. I am part of that study group.

UFHPTI has a physics department for radiation. When you talk about radiation there is always increased chances of secondary cancers due to radiation. R/Os use what they call margins. It is the programming of the radiation beam to go beyond the prostrate and to sides to pre-defined areas to ensure areas just outside prostrate are treated in case something was missed or to provide an error margin.

This is not my opinion nor something I read. It is the R/O explaining to me how proton radiation works and how they program it and why they still do margins.

The standard photon and proton radiation treatments do not kill the prostate cancer. They damage the cells. The prostate cancer cells cannot repair themselves and will eventually die. Normal prostate cells when damaged by radiation can repair themselves. This information comes from both my R/O at UFHPTI and Mayo R/O explaining how the radiation treatment works. There are some treatments that I have read that are actually desgined to kill the area being radiated.

My R/O briefed me that they treat the entire prostate and margins. Why? Because there is a chance that a cancer cell is missed if only treat areas shown on MRI or found during a biopsy. We are talking about cancer at celluar level with prostate not just tumors or lesions found on a MRI or biopsy.

Mayo was completely honest about photon radiation proceeding past prostate possibly causing secondary cancers. I was told that would not have to be dealt with for about 10 years.

Proton radiation is very precise and can be directed and controlled. For me the increased risk and damage to other organs and tissues from photon and I chose proton. I discussed this with my Mayo PCP. It is he who brought up the choice of doing photon (Mayo Jacksonville) or proton at UFHPTI.

My Mayo PCP discussed the pros and cons of each and I decided on proton. My PCP said to me, "For you I concurr with your decision and would be best for you." That is the bottom line do what is best for you.

What is importat to me is to make sure when I post I do not imply I am an expert on any subject on MCC. And that what I post is not an opinion but what was directly stated to me by medical professionals who have been doing both proton and photon radiation treatments for many decades.

Very nicely explained, jc….so it is just as precise as MRI guided (ViewRay) radiation in that it does include margins. But ViewRay still uses photons, not protons.
I can see the protonic aspect being a great leap forward as a primary treatment for PCa, but still baffled as to how it has application in ‘standard’ salvage radiation where no metastases are observed.
Hopkins states that it CAN be used for salvage radiation ( which I was referring to in my original post but did not make clear - sorry), but how? Where do you stop the beam? What is the target? In fact, my RO kind of skoffed when I naively mentioned a gel spacer for my salvage treatment. NO, he said, you might have cells lurking in front of the rectum….
As I have stated in other posts, salvage radiation - either with or absent focal metastases - is shooting blind. Yes, they do a simulation to be able to ‘shape’ the beam around the bladder and rectum, but they are nonetheless carpet bombing you from your navel to your pelvic nodes. I mean, I get it, they don’t have a choice.
It’s eerie when you are on the table and the cone circles around, goes under the carbon fiber table and shoots you from behind!
So again, I’m not seeing the advantage in proton radiation - or even why you would use it - in a salvage setting. NOT questioning YOU, rather the Hopkins claim that it can be used in my ( and others) situation. Thanks!

The best thing you can do for yourself and your treatment is seek as many opinions as you can possibly get. For me, I am moving forward with RARP after talking to three urologists, three medical oncologist and three radiation oncologists (all from different hospitals, 2/3 from center of excellence hospitals) as well as reading numerous scientific studies (use scholar.google.com instead of normal search engines, you get scientific results), reading here and other places online. They all said the same thing, for my 3+4 (slightly better than your 4+3) and my age (54) that RARP was the best path.

I'm not saying RARP, or frankly any procedure, is better than another for anyone or for you - but after that many opinions about RARP for my situation, I felt comfortable I was making the right decision.