Recently received prostate cancer diagnosis: need a second opinion.

@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!

I am not familiar with salvage radiation and thus need to be careful about my comments about it. I wish I knew more and will reserach it. You asked a couple of questions about proton radiation.

I had to decide on photon or proton after three diffeent medical provider consulations and a lot of reserach. My cancer was at low risk level (Decipher test) and confined to prostate per PSMA and bone scan. I chose proton radiation. It is like a lot of posters emphasize is a decision to make specfically for what is best for you and your decision only.

John Hopkins has a short explanation about proton and photon differences. I went through a really long planning phase to get proton. They have a physic department that sets up the beam trajectory and where it stops. They make a specifially designed bed for you to lie in during a simulation test where the define the mesurements for your treatments. Mine was done with CT and contrast and took a log of time.

Prior to each treatment you lay in your specific bed to put you in the precise location for treatment and for me they did a low dose xray to look at markers put in my prostate to make sure I am positioned in exact position. The gantry goes over you from different directions and they keep doing the low dose xrays to make your prostate is in exact position for treatment. If not they move you and then do another xray.

I have attached below a John Hopkins explanation about how proton radiation works and how they control beam and how it is and why it can be programmed to stop at a precise location. Those mesurement are confirmed by a physic department and then the exact measurements are put into computer. I had pencil beam, 30 rouns, and my entire prostate was treated along with margins outside the prostate. The R/O wanted to treat entire prostate to make sure did not miss any cells during testing and also margins outside the prostate.

There is a lot of information out there about proton versus photon but would take pages to post all. This one below was pretty precise on got to the topic you asked about. I think the information below is very good explanation that proton and photon traditional radiation treatments cause damage to the cancer cells making it impossible for them to repair and keep growing and thus eventually die. But the radiation also damages good cells but unlike prostate (andrio) cancer cells normal cells can repair themselves and grow back healthy ones.

This is the John Hopkins Explanation. It was part of multiple page explanation. This information is also availabe on Mayo, Cleveland Clinic and may other speciality medical providers.
Proton Therapy Versus Photon and Other Radiation Therapies
Unlike traditional photon radiation therapy that uses radiation in the form of X-rays or gamma rays, proton therapy uses proton particle radiation. Both photon and proton radiation damage the tumor’s DNA, but researchers say damage to the tumor cells caused by protons is more direct and harder to repair.

More importantly, protons only travel a certain distance into the body before they stop, and they deliver the highest dose of radiation at the end of their pathway. This burst of energy can appear on a graph as what is called the Bragg peak. Radiation oncologists plan proton therapy treatments so the maximum dose hits the tumor cells. In this way, proton therapy reduces radiation exposure and potential damage to healthy tissue, especially in sensitive areas such as the brain, eyes, spinal cord, heart, reproductive organs, major blood vessels and nerves.

In regular radiation therapy, such as photon therapy or gamma knife treatments, the beam of high-energy gamma rays or X-rays goes into the body, through the tumor and out the other side. Photons release energy along the entire path they travel, which means they radiate healthy tissues beyond the tumor. It is estimated that 30% to 40% of the photon dose passes through the tumor. This “exit dose” of radiation can damage the DNA of healthy cells. Proton therapy generates virtually no exit dose.

While the treatment effects of photon and proton radiation may be similar, the precision of proton therapy often makes it a safer choice with fewer aftereffects for certain types of tumors.

I'm 67 I was on active surveillance with a gleason score 6 for 2 years, after mri and pet scan followed by biopsy of the exact location of the cancer, my new score was 7 4+3 my psa remand the same around 6.2 for the 2 years. Dr told me I was probably a 7 back two years ago. Very important to get mri and pet scan so they can get a accurate gleason score and to determine if cancer has spread. I had proton radiation at Mayo in Rochester Mn, 5 treatments only, 2 weeks. They told me a Dr there has it down to only 5 treatments with great results. I stayed at the HOPE LODGE free which I can't say enough about. My recovery has been great, really no side effects. All systems working !!
Good luck to all.

Cheese head ( Go Pack )

I'm 67 I was on active surveillance with a gleason score 6 for 2 years, after mri and pet scan followed by biopsy of the exact location of the cancer, my new score was 7 4+3 my psa remand the same around 6.2 for the 2 years. Dr told me I was probably a 7 back two years ago. Very important to get mri and pet scan so they can get a accurate gleason score and to determine if cancer has spread. I had proton radiation at Mayo in Rochester Mn, 5 treatments only, 2 weeks. They told me a Dr there has it down to only 5 treatments with great results. I stayed at the HOPE LODGE free which I can't say enough about. My recovery has been great, really no side effects. All systems working !!
Good luck to all.

Cheese head ( Go Pack )