Starting Proton Treatments for Prostate Cancer: Any experiences?

Hello!
Is there any support groups where we can have a call with patient who has undergone proton therapy? Struggling to discus this with someone who has this experience, for my relative. Or maybe someone here can do that?
Thanks in advance

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Interesting how you can separate the Proton treatment side effects from the Lupron side effects, especially the fatigue.

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Thanks - great information you shared. I have had 2 PSMA pet scan at the University of Seattle and so far the cancer is still in my prostrate. Your last paragraph is where I am at - deciding where to get PC treatment (Seattle- proton Or Kalispell, Montana photon) many variables- but have to decide this week- thanks again
Don P

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dmp65, Your PSA is very high. Mayo Jacksonville did not offer proton radiation because they don't have it for my prostrate cancer. They have photon only which is the radiation therapy you refer to. Both are radiation treatments.

Major difference is that proton does NOT pass through body like photon does. It also can be targeted more precisely and releases it's radiation at the targeted area. The research and feedback (5 year studies) was that it would have less damage to surrounding organs and tissues.

But research (5 year studies) is showing both will have similar side affects. They are doing long range studies now that will give long range statistics that are not available now. The short range studies all sort of show you will have side affects with both. However the long range studies are not in yet thus the secondary cancers that radiation can cause are not available yet. UFPTI got a 25 million federal grant to study the long range side affects of proton radiation to photon.

What I chose was proton to take advantage if there was a chance of less damage to organs and tissues. Thus I did not have Mayo Jacksonville photon radiation but went to UFPTI and had proton.

Most patients will have side affects from both types. However we are all different and what one person will have another will not. I had reduced urine velocity and amount about 3 weeks in. But after treatments were over it slowly returned to normal. I had some dribbling and increased inability to hold urine when I really need to go. But this too has been improving (I finished treatments July 5th).

Where do you live? If you can go to Mayo Rochester or Phoenix Mayo they have robust and varied proton treatment plans. If you live in Florida there are several proton centers like the one I went to in Jacksonville UFPTI. It stands for University of Florida Proton Therapy Institute. They have been doing proton treatments since 2006 and have 5 gantries and treatment rooms. Really an outstanding facility. I have heard same goes for Mayo Phoenix and Mayo Rochester. Just wished Mayo Jacksonville had proton but they do not.

I am not sure who said proton was better than photon both have the same curative success rates. The better is probably the fact that proton will not go in and through body like photon does. Proton releases it's radiation as specific target area and will not pass through body. But both will have side affects. I think what I hear from MCC here is the major side affects are not from radiation but the hormone treatments. I did not have to have hormone treatments as my Decipher test showed low risk even though originally wanted to do it.

Regardless of where you go and what type I would suggest, bone scan, PSMA, and Decipher. I assume you have already had your biopsies. The tests I mentioned area going to give you a much broader picture of your cancer and if confined to prostrate or has spread. All those factors will affect the type treatment you have.

I will say like I have always said here we are NOT doctors, radiologist, oncologist, urologist. Thus medical advise should come from those that are. Also know we are all different and what is best for one is not best for you. Also mentally physically we are all different and what we can tolerate both physically and mentally.

Do some research from major providers like Mayo, Cleveland Clinic, John Hopkins, Prostrate Cancer Center, American Cancer Society, etc. There are also many other sources others can provide you with. Then get several at least two consultations and opinions. Then you enter your treatment an informed patient.

Good Luck!. I think I posted months ago that the highest stress level in your prostrate cancer journey is deciding on what treatment to have knowing you have active cancer in your body.

Good luck!!!!

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Treatments at Mayo Phoenix are Monday, Wednesday, Friday, Monday, and Wednesday. My oncologist wanted 28 treatments till I said I had checked out the 5 treatment Cyberknife radiation and all of a sudden, he could do the 5-proton treatment protocol at Mayo that Rochester has been doing for a while. A study in England that was on BBC news also stated that the 5 treatments are better than 20 or more. PC is slow growing and can't repair itself if hit with high doses of radiation in a short period of time. After I got to see the bills to Medicare, I can see why he wanted to do 28 treatments rather than five $$$$$$$$$$$

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Treatments at Mayo Phoenix are Monday, Wednesday, Friday, Monday, and Wednesday. My oncologist wanted 28 treatments till I said I had checked out the 5 treatment Cyberknife radiation and all of a sudden, he could do the 5-proton treatment protocol at Mayo that Rochester has been doing for a while. A study in England that was on BBC news also stated that the 5 treatments are better than 20 or more. PC is slow growing and can't repair itself if hit with high doses of radiation in a short period of time. After I got to see the bills to Medicare, I can see why he wanted to do 28 treatments rather than five $$$$$$$$$$$

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Interesting! How many days apart were the 5 treatments ? One treatment 5 consecutive days? Or 1 treatment a week for 5 weeks? Or?
I am working with Fred Hutchinson cancer center in Seattle- I will ask my Doctor if they do the 5 treatment therapy. That could be helpful for me because I live in Montana & will be traveling to Seattle for treatment. Thanks for the feedback & hope your PSA stays down.

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I am 74 and finished my 5 proton treatments at Mayo Phoenix in April. PSA 2.9 two cores of 4-3 and two of 3-out of 30 cores taken. The positive cores were all from the area of the 7 mm lesion that the MRI showed a Priads 4. The 30 cores were because of my 120-gram prostate. I have had no side effects and even messaged my radiation oncologist to ask if he was sure they gave me the right dose of radiation. The only way I could tell anything was done was two tan circles on each hip where the radiation entered. My three month follow up PSA was less than .1 which they said was undetectable. Needless to say, I am thrilled with the results. I just saw an article on the BBC app yesterday that said that a new study just released proved that the 5 radiation treatment is better than 20 or more of a lower dose.

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