Starting Proton Treatments for Prostate Cancer: Any experiences?

jacksaunders, completely agree with your advise to billmoskowits. My urologist wanted to do biopsies via rectal as I have heart failure and was concerned about my heart. I think it is just easier as is done in office versus hospital. I disagreed with doing that way telling him have had multiple surgeries since heart failure and my cariologist has no problem with me having general anesthesia. I asked him to check with my cardiologist as I did not want to have rectal only if absoluelty needed.

I was also told there was 2% chance of serious infection if done rectally and virtually none if tranperinial. I did not like the comment to me: "oh even if you get the infection you would only have to stay 2 days in hospital." My cardiologist confirmed to uroliogist general anesthisia okay and I had it done that way.

I say all this as each of us needs to be proactive and speak up. If you question something question it. Seek second opinions, seek more advice. As you can see the easy way for your urologist was not good for you. So your advise of having it done transpeinal and under general anesthesia is what I would have said too.

The anethesist I had was same one I had for a recent colonoscopy and knew me. He said you won't have a problem but I will be monitoring you.

For the Space/Oar and markers I had it done transperinial at UFPTI. It was done with lanicane and laughing gas. Was more of just uncomfortable than painful. They have your legs wide apart and up.

I would like to know from others how they got their Space/Oar and markers done.

21 sessions at a Japanese facility a month ago. After about session 7 I had quite a bit of pain on urination. Flomax helped but didn’t totally eliminate the problem. Constipation was an issue I wasn’t expecting. Caused me the most grief. Never had it before.

As soon as treatment finished however, all problems resolved themselves in a matter of about a week. Don’t know knew psa score but very happy with the limited disruption to daily life and the fact that the wood is still good is a bonus.

I had a 30 core transperineally MRI fusion guided biopsy of my 120-gram prostate with a local with no problems at all at Mayo Phoenix and if I ever need another I would do it all over again. I guess it is whoever you doctor is that is doing it as to their skill level and your pain tolerance. I also do my colonoscopy without any anesthesia while I am wide awake because I want to see what the doctor sees. The only discomfort at all was when he turned the scope around to come back out and I have had farts that hurt worse.

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

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.

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.

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 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.

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.

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?