Starting Proton Treatments for Prostate Cancer: Any experiences?

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.

Thanks for sharing your story- question- you had 21 sessions but you recommended 5 sessions. When you say 21 sessions- that would be 21 days and you would recommend 5 days or 5 sessions? Just want to clarify that. It would be better to have only 5 days of treatment. Thanks

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!!!!

@ftd3: I did my mridian treatment at the Orlando Health Cancer center with Dr. Christopherson. She got her training at MD Andersen. I have had 3 psa tests since my treatment. Each was down. Went from 10.2 to 1.4. Very happy with my choice. No negative changes to urination. Ejaculation has changed but not a real issue. No pain. Normal activities for me.

Thank you for your comments. Curious how you are doing after your MRIdian procedure and where did you go it? Still happy with it?
Thanks.

I had 21 sessions earlier this year. During treatment I had quite intense pain when urinating but flomax alleviated that. Because there was pain, I didn’t drink enough water and as a result got constipated. Never been constipated before. Quite unpleasant.

If you can get in for the five session protocol , I strongly recommend.

Everyone is different but in my case once treatment was finished all side effects were gone in week. Urine flow now much, much stronger than before and was not expecting that. Erections still happening but if I had to judge, keeping them is probably not quite as good as before.

Appreciate each of you sharing your experiences with Proton treatment for prostrate cancer. I am 76 years young & have been active monitoring my prostrate cancer since 2018. My PSA has slowly been increasing from 4 to 7, to 11, etc and now is 23.2. Also have one Gleason score of 4 + 4 = 8. I have the option of proton therapy or radiation therapy. From what I’ve read the proton therapy is better with less side effects. Would appreciate hearing from those that have been treated with proton beam therapy & those who have been treated with radiation- thanks

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

Completed Proton treatment end of May and also had one Lupron injection
I'm 76 and fit for my age.
Symptoms after treatment.
Bowel distress - frequent urges and discomfort lasted about 3 months.
Fatigue particularly around month 2 and 3.
Lupron side effects.
Suppressed libido
Some loss of muscle mass
Hot flashes. These were daily and not very distressing.
Mo mood issues however I did start a low dose of Lexapro.
I feel pretty good now, Libido returning, bowel issues ending.
Never had issues with urination.
Overall pleased with the course of treatment.
Will have PSA and follow up in November.
Good luck. If you have any post treatment concerns follow up with your treatment team right away. Also, Prostate Cancer Research Institute has lots of good videos on YouTube.
Great resource
Good luck

You are welcome! Any time.