Starting Proton Treatments for Prostate Cancer: Any experiences?

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.

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.

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.

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.

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

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.

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.

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.

When we finally got to my treatment the Proton radiation was done with no Space/OAR gel.

I had my proton radiation done at UFPTI in Jacksonville Fl. It was a outstanding facility. They had 5 treatment rooms with gantries. You stay in a very large waiting lobby that had tea, coffee, water, area. There was as special enclosed room with toys and play areas for children. Has a spiral stair case, large tinted windows, a piano and area for musicians to play music. I would guess the waiting area was about 2,000 sq. ft.

The rest of waiting room has many different type chairs and areas. It was huge. When you come in you have a special I.D. that you place under a reader that signs you in and lets your care team know you are there. When your reservation time comes one of your care team comes out and escorts you back to the treatment rooms. Have the same treatment room and same team each time. Several checks to make sure you are the patient including you verifying your picture and your name on a special bed you lay on. The treatment last about 10 minutes and that includes low dose xray of you markers and any adjustment to the table you are on to line up beams.

You do not go back for treatment until your time. Then you go to dressing room (alone) and immediately when you change clothes you are brought back to gantry for treatment. You are assigned a team and you see them each and every time you come. Your time is given to you the day of treatment for next treatment time. You can request a treatment time and they do everything they can to give that time to you each time. I requested a 12:30 time and I was always given that time within 30 minutes for all 30 treatments. No one every sees you with your rope on other than radiation team techs.

Had changing room with lockers and a bathroom right across from them. Each gantry (5) was probably 30-40 feet from each other along a long hallway. Each gantry treatment area has it's own bathroom and changing room with lockable lockers.

At my initial consultation with a provider who only had photon radiation I got the too expensive and no additional benefits from one provider but my research showed that there are several additional benefits for proton versus photon radiation. And Medicare paid for the proton radiation treatments with no issues or problems. It is expensive but Medicare does pay for it.

I also did a lot of research. UFPTI provided tons of research information, books, etc. Some of their information showed that almost every state had patients coming to them and 33 different countries.