Starting Proton Treatments for Prostate Cancer: Any experiences?

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.

Proton Pencil Beam radiation treatment for 3+4 (7) score. Mine was 30 rounds of radiation over 6 weeks. Had Space/Oar done which really helped with treatment time. PET scan negative, and bone scan negative. Side affects were minimal and no treatment was needed.

Have first PSA test after treatment finish (July 5th) on September 22nd. Then first after treatment with radiologist/oncologist on October 4th. There is a lot of good research out there on benefits of proton radiation versus photon.

If you have symptoms or question don't hesitate to asked your radiologist/oncologist. Good luck!

We all love good news in this sea of just not knowing sometimes, hope all keeps going the right direction, thanks revj

I am a 69 years old Black American male. I completed proton beam therapy for prostrate cancer last October with 5 treatments. The whole processes/procedures went very well. Thank God! My follow-up test indicated my PSA dropped from almost 10 to 2.1 something last March. Be encouraged and I pray you will have good and lasting results.

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.

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