Starting Proton Treatments for Prostate Cancer: Any experiences?

The options for prostate cancer are many. I suppose it may depend on the extent of the growth and other issues.

But, that said, each morning prior to the proton radiation of which there were three or possibly four machine, the waiting room was filled with those awaiting treatment. All with back open smock and nothing else. I would say that during my 2 1/2 month at Loma Linda the morning men I met were at least 50% physicians from all across America, This singular fact validated my decision to select proton radiation therapy. I was in Spain when diagnosis with biopsy, then went to the US Naval Base in Rota, Spain for another one. At that time, the lead urologist from Bethesda was on sight and performed the 2nd biopsy and provided validation of the slow growth cancer with PSA 6.47.

I would strongly suggest if the option to have proton radiation and the process fits the issues, then by all means do so. I know economics plays heavy and hard in many cases, as proton is relatively expensive. I am relatively certain Medicare will pay.

RH/Melbourne Florida. (By the way I grew up in Vero Beach Florida). I live in Ponte Vedra (just south of Jacksonville where Mayo is). I have been a patient of Mayo Clinic as of 2006 before they even had a hospital just a clinic.

Jacksonville Mayo does not have proton radiation only photon. They are building a cancer center that will have proton but is years away. Just wanted to pass that along. Both Rochester and Phoenix have robust proton prostrate cancer program and I learned a lot about proton radiation versus photo from those locations web sites.

All my MRIs, biopsies, initial medical exams and consultations were (exam, ordered tests, did biopsies) by a specific Mayo urologist. But when he referred me to radiology/oncology I found Mayo Jacksonville did not have proton radiation treatments.

After discussing with my primary care doctor I decided to have my radiation treatments at UFPTI (also in Jacksonville). Then I asked to see my Mayo urologist after my treatments were finished for routine follow ups (NOT treatment follow ups that was at UFPTI). I was told because of the volume of patients I could not see Mayo urology because I had my radiation treatment at UFPTI.

I never had a urologist at UFPTI. UFPTI used the medical exam, MRI with probe/contrast, and the biopsies done by my Mayo urologist to design and set up my treatments by their radiology/oncology physic department.

I have never see a urologist at UFPTI. UFPTI uses Shands for any referrals needed and for things like Space/Oar but I never saw or was treated personally by a urologist. When I advised UFPTI of Mayo decision they offered to do a referral to Shands urology if I wanted one.

But I did not as it was a request for routine follow up care with the most experienced person knowledgeable of my urology. At UFPTI I would see a brand new urologist who did not do my medical exam, DRE, MRI, and biopsies using the MRI/Fusion.

I mentioned this as you said you may go to Jacksonville Mayo but you had your radiation treatment somewhere else. I disagreed with Mayo as it was a request for just follow up NOT my on going radiation follow ups. I am still doing radiation therapy follow ups with UFPTI radiology/oncology not urology.

Instead of the Space/Oar did you have to do the balloon each time?

I have heard of problems with Space/Oar but mine work. The only thing is that it is you do feel it. I talked to my Oncologist/Radiologist and said "Yes they are a real pain in the butt." I laughed but the discomfort has gone away as I was advised it would.

Completed proton radiation treatment at Loma Linda Hospital in Loma Linda, California, July 2010. The procedure has changed somewhat from what I understand, but my experience is briefly outlined below.
PSA: 6.46
Gleason: 3 + 3
Diagnosis: Slow growth cancer in one of the prostate lobes.

I have TricCare for life as US military (now retired); I recall the total cost was in excess of $100K; not to include personal accommodation expenses.

2.5 months of morning Proton radiation treatment requiring accommodation and renting a vehicle, so that issue is an economic consideration.

Absolutely, no residual issues...nothing, zero, "nada".

PSA test every year; up and until 2016, PSA Zero; 2017: .1;2018;.4 now PSA as of July 2023 at 3.29
So, 13 years and increased PSA.

There is no way to ascertain if cancer has returned..watchful waiting to measure any future increases. Perhaps later a scan. I have a "family doctor", but I use the VA as primary. I may go up to Mayo in the future if my PSA continues to increase...RH/Melbourne, Florida

My biopsy was via TP procedure. Markers placed but the Space/OAR gel placement failed which delayed my proton treatment. Eventually got my proton treatment without the Space/OAR gel.

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.