Looking for best treatment choice.

I completed 44 sessions of proton beam radiation at the University of Washington/SCCA proton beam center in Seattle on July 13th, 2016. The once daily sessions started three weeks after a minor procedure done by a urologist (a bit like a biopsy) to insert 3 gold beads into the prostate. These beads are used during radiation as part of the procedure to ensure that the body is perfectly positioned every time you receive radiation. The proton beam center in Seattle uses a technology called pencil beam radiation which is more precise than conventional proton radiation and allegedly creates fewer side effects. They also make a mold of your lower body which is also used to position you during radiation.

After the beads are inserted and the mold is made, a "physics team" consisting of scientists, computer wizards and radiation oncologists spends 2 weeks preparing your treatment plan. These people, I was told by a highly regarded oncologist at another university center, are key to a successful treatment; and he spoke highly of the team at UW.

The staff at UW were incredible. Each and every one of the doctors, nurses, technicians, administrative staff were kind, compassionate, and outgoing. The appointments ran like clockwork. Every Thursday there was a catered lunch to celebrate patients who were completing treatment. Once a month there was a dinner at a local restaurant that prostate cancer patients and their partners could attend, to socialize with fellow patients.

My daily treatments (weekends are off) took half an hour from the time I arrived, to the time I left. Most of that is spent changing clothes and getting dressed again. The actual amount of time in the treatment room is only about ten minutes, with the radiation being about a minute and a half. The rest of the time in the room is spent getting lined up, having the balloon inserted, and getting the X ray to make sure you are properly aligned. Every three weeks there was a supplementary CAT scan to check alignment. Once per week I had a meeting with the doctor supervising my treatment, mostly to discuss side effects, and whether I needed any medication to alleviate them.

I did have some side effects, which apparently everyone gets to some degree. These can be a burning sensation on urination,which I did not experience; increased frequency and urgency of needing to urinate, especially at night, weakened stream and difficulty initiating. Bowel complications are also a common side effect. All these are supposed to abate over several months after treatment ends. I experienced several of the urinary and bowel effects like minor incontinence, which were not pleasant, but were not painful or severe enough to require intervention like Flomax or Imodium. I can't say the treatments did wonders for my sex life, but that was on the wane anyway. Another side effect from radiation is fatigue, which only effected me on one or two days. Otherwise, I maintained a routine of daily exercise that included aerobic and strength building workouts.

It has been 19 days since treatment ended. I'm almost back to normal on the urinary front; back to normal on the gastrointestinal side; as for the sex life....we'll see. I'm supposed to have my first post treatment PSA test and follow up visit a little over two months from now. If I conform to the norm, I should expect diminishing PSA scores over the next 18 months.

First three month check up after 45 sessions of proton beam shows PSA down to 0.8; hope it keeps going down, although I am told that after radiation it can take a while to settle. Had side effects during treatment, which are slowly getting better. Best thing so far was avoiding surgery. I was able to maintain normal activities during treatment.

Good news at the January 2017 six month mark is PSA is down to 0.36. Doctor says he would like to see it below 0.2. Next test in April 2017.

Bad news is worsening of side effects. Prior to undergoing proton beam several Loma Linda patients I interviewed told me they experienced minimal side effects. Even characterized the treatment as a"radiation vacation".

Not so in my case. Bowel/bladder incontinence and sexual dysfunction appear to be getting worse, not better.

One year since proton beam treatment. 3,6,9,and 12 month PSA readings 0.8,0.36,0.3,0.12 respectively. Side effects seemed to get worse over time. Include bowel leakage and urinary urgency and sexual impairment

At the fifteen month mark post radiation rectal bleeding and bowel incontinence developed. I started seeing a colorectal doctor almost weekly for a series of invasive and unpleasant treatments over the next seven months . The bleeding and incontinence have stopped either as a result of the treatments, which I asked him to stop; or my body repairing itself, or both. I also have some urinary urgency and night time frequency , which I would not consider serious like the bleeding. Sex life impaired. PSA marched steadily downwards every three months so that at the 21 month mark post radiation I'm at 0.09 . Last three tests registered 0.06 followed by 0.12 followed by 0.09. Radiation oncologist says that at the 24 month mark he considers me to be out of the "red zone".

PSA marched steadily down to 0.05 as of a few days ago, now third anniversary of treatment.

Bleeding started at 18 months; visits to specialist over several months for treatment. Largely abated to occasional episodes.

Nighttime sleep interruption to urinate every two to three hours

Four years post proton beam radiation. Bowel bleeding has stopped but the damage to rectum still there.

PSA has been consistently low between 0.12 and 0.04 ng/ml

years since proton beam. no evidence of recurrence.

George's e-mail address is: orbans AT comcast.net (replace "AT" with "@")