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Recently received prostate cancer diagnosis: need a second opinion.
Prostate Cancer | Last Active: Dec 9, 2024 | Replies (30)Comment receiving replies
@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.
Replies to "@heavyphil The technology for proton radiation is extremely precise and much improvements have been made on..."
Loma Linda Children's Hospital, Loma Linda, California. I had proton radiation at Loma Linda in 2010 which at that time required 2.5 months of morning radiation sessions. Background: Gleason 3+3, PSA: 6.47 with localized slow growth prostate cancer.
I saw children in preparation for radiation therapy with their heads shaved and markings across their skulls. It was difficult to view these really young children in such a condition.
The cost which was covered by TriCare for me was something like $150,000. not including housing, rental car and such.
The point: Cancer has no boundaries, young or old. Loma Linda was one of the first to invest over 200 million in the cyclotron machine, which spun to throw off the protons. All are constructed below ground. The machines used to focus the beams were as big as a Volkswagen bug. Lastly, in preparation for our session, usually 4 to 6 men were waiting..so we spoke somewhat...I would recall that nearly all the men were doctors or in the medical field. I thin at that moment, I validated my decision and my decision only without consultation after discovery to undergo proton radiation therapy. Perhaps the best decision of all time.
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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!