Starting Proton Treatments for Prostate Cancer: Any experiences?

My husband will be doing the Proton Beam therapy at Mayo in AZ. He had 3 plus 4 & 4 Plus 3. On 2-29-24, he will have a spacer surgery where they put in gel between the rectumn and the prostate to protect the retumn from the radiation. He will also be getting the Decipher test which will give him an idea of how aggressive the cancer is. They take the sample from his biopsy. This is a DNA type of test. We have 2 sons so we thought it was important. My husband's father and grandfather both died at the age of 56 from heart disease so we wouldn't of known if they would of had Prostate cancer. At this moment, my husband does not want to do the hormone therapy. The Radiologist did recommend 18 months. I'm not sure where this going to go. I do understand that you can drive yourself after each radiation treatment. Good luck on your treatment.

Just started Radium 223 injections

Anyone know the success rate of it stopping bone cancer? What about adding years to survival?

Yes, started with 3 months shot on Jan 24th, just over 3 weeks ago. Only recognized side effects this week. First, low-grade headache. Second, frequent urination, and for the last two days I've had very frequent and severe hot flashes. Enough that I haven't had much sleep. Requested meds for the hot flashes this AM. Good luck!

NO

In 2018/2019 my PSA started climbing to 5.6 ng/ml. Biopsies were taken on two separate occasions showing that indeed prostate cancer was present and advancing. I underwent 45 sessions of Proton Beam Therapy. NO side effects and the outcome was fabulous. My PSA in 2023 was 0.7 ng/ml, well within the normal range. No hormone therapy.

I wrote a couple of days about and had ask my Doctor for help with headache and hot flashes. I had'nt had much sleep for a couple of days because of the hot flashes. He prescribed Venlafaxine, 37.5mg and I took the first one last night before bedtime. I had the best night of sleep in a month. I only got up once during the night for the bathroom, If I had any hot flashes they were so mild as to not wake me and I did have not had a headache all day.
There is hope folks! I'm sure there will be spells when things are not as good but I'll deal with them. Good luck to you all, keep your heads up.

IPSA of 4.6 with Gleason of 7 (3+4 at age 77. 5 proton radiation treatments at Mayo Rochester. No side effects from proton. 1, 2-month Lupron shot with hot flashes. Currently PSA is at 0.1
Had slight difficulty urinating after 4th treatmenty. This was eliminated immediately after taking Flo Max which I weaned myself off after taking 1 month. No other side effects. Feel great.

@desertrat
Similiar Gleason score mine was 3+4=7. My PSA was 3.75 but rising every 3 months. Decipher test showed risk level low, PSMA negative, and bone scan negative. Elected to get 30 rounds of proton pencil beam radiation at UFPTI. Mayo Clinic Jacksonville only has photon.

You are at an oustanding medical facility and you should have no doubt in their expertise and treatment.

I assume you are having radiation only and no hormone. If that is correct you should have minimal side affects. There will always be some minimal damage to tissues and organs around the prostrate from proton radiation but it is minimal versus photon.

There is NO pain or discomfort during treatments. About 3 weeks into treatments I had some minor fatique while walking 3 miles. I could not longer bike because of the Space/Oar but swam and walked. The fatique was noticeable but did not prevent me from exercising or anything else.

What did happen into therapy was increased urination, urge to urinate, some dribbling, and dealing with drinking water prior to treatments and holding it. What I learned to do was urinate when I arrived, drank the water, then urinated after treatment and I was fine driving home the 45 minutes it took.

All these symptoms gradually went away after treatments stoppped and back to biking 25 miles, swiming 1 mile, doing water aerobics and walking. I am 76 but in past done sprint triatholons and will begin again this year with my first one in March. I did not do any in 2023 because was doing treatments and could not bike.

With the proton treatments it provides less damage to tissues and organs. Basically the proton radiation enters body with litte or no radiation, and then stops at prostrate or where your radiologist/oncologist has it set. It does not proceed past prostrate and out through body like photon.

Did you get the Space/Oar. It is put in to reduce damage to rectum from the radiation. It helps move it away from prostrate. I also assume you had markers which help techs set up treatments each time.

I finished treatments in July 2023. At my first follow up 3 month PSA test it dropped to 1.29 from 3.75. Then the second 3 months dropped to .79. I have another test this month. The oncologist/radiologist stated their goal was to have it stay below 1 and only become concerned if starts to rise. But remember if you have a prostrate your PSA can rise and have nothing to do with cancer like bike riding causes irritation and make is rise.

So may feedback to you is the treatments are a piece of cake compared to biopsies, and test done to get patient ready for radiation treatments. I did get the sun burn areas on both side of hips that they told me I would get as this is where proton beam comes in. But went away several months after treatments.

Good luck, you are in good hands!!

I had 45 days of Proton Radiation treatments for Prostate Ca ever in Michigan. I declined to take the hormone therapy shots as recommended. I was still accepted into the program and my PSA is now in the normal range. You are about to partake in perhaps the best form of radiation treatment for your cancer. I had no side effects except for slight fatigue. No damage to my bladder or my colon. No effects from low testosterone due to those recommended hormone shots. However it is routine to reduce our levels of testosterone to 0 along with prescribed radiation treatments. It insures the cancer has less of a chance to return.
Jack
East Lansing, MI

Thank you. Jim had a zoom session with the doctor that is going to do his surgery on 2-29-24. He said that they can't do the spaceor gel surgery on Jim because his cancer is a little on the outside of the prostate. They are going to use the boragel instead of the spaceor gel because if he has any problems with the rectumn wall, they can deactivate the boragel. Has anyone used the boragel and what were the outcomes and side effects if any? Also, did any of you have blood in the urine after this procedure?