Starting Proton Treatments for Prostate Cancer: Any experiences?

I had similar experience during Proton Beam treatment. It was a strange "pain" or discomfort and then slow urination. Spoke with oncologist and well as urologist and it was suggested that inflammation of the prostate can cause these symptoms. It can also be impacted by the SpaceOAR hydrogel which was injected to reduce potential damage to rectum. Symptoms started to recede after 3 1/2 months and are now largely gone. It was recommended that I take ibuprofen to reduce inflammation. This seemed to help. These symptoms are uncommon but I have heard of many experiencing them.

I had same issue but occurred later in process. Radiologist said it’s from inflammation of the tissue caused from radiation. Take advil or another NSAID like Advil. It helped me quite a bit but didn’t totally solve the issue. I would take 1 every 4 hours during the day. ( You have to take a lot over a long period of time to damage kidneys so I didn’t worry about taking it for 2 months or so) Problem went away about 3 weeks after treatment completion)

Would also take 1 during the night for a total of 6 each day. Ron

You say you got 5 proton treatments. Were they SBRT treatments using high dose radiation (hyperfractionated) ? Was the machine a ViewRay MRIdian MRI guided one? Or, was it a CT guided one? I am trying to connect with those who have experienced 5 treatments using the ViewRay MRIdian MRI guided proton beam machine. What are your thoughts?

I recently had my consultation and was told that protons are not delivered using the Mridian ViewRay, only photons. Has something to do with the magnets in the MRI and protons.

I did the 5 proton treatments at Mayo Phoenix. It was CT guided as they inset a saline filled balloon with 100 ml to immobilize the prostate even though I had the SpaceOar Gel inserted. They then do an Xray and CT scan to ensure that the prostate is where it belongs compared to the planning visit before sending the pencil proton beam into you. You get 725 cGY for a total of 3625 cGY of radiation. If it wasn't for my tan circle on each hip I would have never known anything was done to me.

From what I understand 5 Proton treatments is quite common right now as of 2023. However your oncologist (RO) may have valid reasons for giving you more than 5. My first RO wanted to give me 5 Proton SBRT treatments. A second RO who does CyberKnife said it was common for Proton machines to breakdown. In addition, articles state that one can receive some bad burns on their skin (think sunburn) where the beam enters the body. Note: both ROs are on the East coast. My biopsy indicated 3 lesions, 2 are GL6 and one is 3+4=GL7. Just because only 3 were found does not mean that others are not lurking in the background since most biopsies are "blind" ones. I only learned recently that radiation is aimed at the entire prostate and does not target only the lesions. Most treatments are described as "targeting the tumor". This article states that radiating the whole prostate is what is "typically done". Go to https://www.inspire.com/groups/zero-prostate-cancer/discussion/meridian-view-ray-versus-cyberknife/ Then scroll down to the comment by Mark Scholz, MD Jan 7, 2021. Be sure to read it since it also clearly defines the 2 types of erectile dysfunction (ED). Finally, read the recent results of this large long term study regarding AS and discuss it with your RO. https://www.nbcnews.com/news/us-news/study-finds-prostate-cancer-treatment-can-wait-men-rcna74512

I had 30 rounds of proton pencil beam radiation. I think the extended ones have less radiation power used than the shorter term treatments. I was told I was given pencil beam as I have a AICD/Pacemaker and wanted to do a much as possible to stay away from the device. They mentioned would have had proton scatter beam if not had device.

I was told about the sun burn on side of body (both sides) where beam comes in. It started about 3 weeks in. It was not painful but could see it. It is still there but fading (been a month since my last treatment). I was assured it would fade and go away by oncologist. My Mayo demeratologist confirmed this when doing a recurring body skin exam recently. And confirmed was a common side affect.

I like you inquired about radiation on biopsie identified areas. I was told that entire prostrate is treated as well as margins. This was to ensure getting all areas treated so not to miss a section not identified in the biopsies. I had 20 done using MRI/Fusion method.

I had discomfort from the Space/Oar. But totally accepted it to keep rectum away from radiation. I did experience less velocity and force on urine flow. I also had increased dribbling. The biggest issue with Space/Oar is I was not allowed to ride bike. The discomfort from Space/Oar is now gone (1 month after treatments). I was told initially is about 3 months discomfort would diminish and gel would be absorb by body. That was right on.

I had 30 rounds of proton radiation (pencil beam). About 3 weeks after last treatment I noticed less going to bathroom, and increased velocity of urine. This was something my radiologist/oncologist was constantly asking about to ensure I was emptying my bladder.

So I guess I am one of the lucky ones to get relief quicker than expected. I really don't notice now much different than before treatment to now. I was told during initial exam (DME) that my prostrate was small and not enlarged. I think that help keep my symptoms lessor and improved faster.

If you have a biopsy, go under anesthesia at a hospital. I tried having a biopsy with a local, and I passed out when the needle hit a nerve. They Had to repeat the biopsy. They have to get a predetermined number if core samples 15-20 or it won’t be paid for by Medicare or maybe your insurance. My biopsy costs were $18,000