Let me begin by saying that this journey, as well as all of our other bumps in the road, was shared with my wife of now 46 yr. She is my lover, partner, friend and most importantly, at the time of my Pca discovery, she became my secretary. She did the bulk of the interenet research, took notes at all consultations, made the phone calls and appointments, generally kept all the records organized and kept us focused on the job of beating the Pca.
My yearly physical in Febr. 2001 gave me the news that my PSA was a "little" high per my GP - PSA 4.8 and "free" PSA 19%. I was referred to a urologist who felt an area of firmness on the left side, so a biopsy was scheduled. Two of 12 cores showed cancer - both came from the area where the firmness was found. Gleason was 3 + 3 = 6 on each and stage was T2b.
The urologist who was a surgeon gave us all the particulars on his surgery, sent us to a second surgeon for opinion and told us to try to make a decision within 6 mo. We consulted with a radiation oncologist who did both external radiation and/or seeds and had a meeting with a doctor at Loma Linda about proton. We scoured the web for any and all info we could find on all procedures and then made a chart with all the pros and cons of each. We knew that whatever intervention we chose would have an impact on our lives and that once done, we would have to accept and live with the effects.
Our choice was proton radiation - I had been told that my cancer had been caught early, so chances of cure with any modality were very good and at my age (65 yr) I was more interested in quality of life than quantity. My treatment was to begin mid May, but on Easter Sunday I had a heart attack and needed a stent implanted - rehab followed. With my rescheduled date in mid June 2001 and a day after finishing rehab I began treatment at Loma Linda.
You begin with a consultation with your doctor - he does his own DRE, PSA and any other tests he feels are needed. Next you make your bed so to speak, the one you will be lying in for the next 8 weeks - it is called a pod. It begins with something that looks like a large PVC pipe cut in half. They lay thin styrofoam sheet over this, you lie down in it and then they pour a warm liquid underneath the styrofoam - it hardens into a custom-fit body mold. A CAT scan is made while in the pod. The scan determines the exact placement and shape of your prostate. From this a bolus is made out of jewelers wax that will be inserted into the machine and the bolus will allow the machine to shape the proton beam to the exact shape and volume of your prostate.
Treatments are done daily, Mon. thru Fri. with no treatments on weekends. Just before your appointed time you are to drink about 16 oz of water, change into a hospital gown, go to your assigned gantry (these are the rooms where the beam is given), get into your pod, a technician inserts a plastic tube with a small balloon at the end into your rectum and fills it with warm water (this is to move the rectum and bladder away from the prostate), a low energy Xray is done to ensure you are in the proper position, all of your info is inserted into the machine and the treatment is given. The whole procedure takes about 20 minutes and actual beam time is less than a minute. The proton beam travels at 2/3 the speed of light so it is doing minimal damage to tissue along the way (the damaged cells repair in 6 hr) and the bulk of the energy (known as the Bragg Peak) is deposited into the prostate (remember the bolus) and THERE IS NO EXIT beam. Treatments are given horizontally at the hip - right hip one day, then left the next, etc.
All the rest of the day is yours to do as you want - exercise is highly encouraged and they provide access to the first class University recreation center free of charge to prostate patients. You meet with your doctor once a week and sooner if you have any concerns.
Some of the side effects that could arise while going through treatment are: slight sunburn to hip areas where beam enters, allergic reaction to latex of balloons, diarrhea and fatigue. I had none of these during my treatment and heard very little complaint from others about any of them. Sexual activity can be continued during treatment.
My treatments were over mid August 2001. I have had no incontinence. As for ED - I had been having a slight problem off and on with ED for a number of years caused by medications. I have not noticed any change after proton, so I can only assume that proton did not have any effect so far. We were asked to have our PSA checked every 6 months for the first 5 yr and mine has steadily dropped to it's current 0.2.
I want to make two points about the importance of EDUCATION, EDUCATION, EDUCATION!!
Even though Pca is called the "silent" disease, there are "red flags" that appear. I had two of them.
FAMILY HISTORY - both of my brothers had Pca, so I was about 3x as likely to have it.
TRACKING YOUR PSA - No longer can we rely on 4.0 as the magic number. It is important to get a base PSA and then do your own tracking. It was any jump of 0.75 or more between testings, but now the NCCN says any jump of 0.5 needs to be looked at. I have PSA records back several years and in checking found that my cancer probably began in 1999 when I had a jump from 2.3 to 3.4.
I hope the above will be informative to anyone who might be interested in proton and I will try to answer any questions you have.
07-11 10 yr PSA - 0.2 No side effects to date. ED is a problem from time to time, but my age and medications also contribute to this - Viagra works good.
Post Edited (Dutch) : 7/15/2011 8:55:22 PM (GMT-6)