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I went through Proton Therapy for my prostate cancer one year ago. It started for me November 2015, I just turned 60. I went to see a Urologist for the first time. He told me I had a slightly enlarged prostate and then drew some blood. A week later my landline and cell phone were ringing. It was the nurse from the Urologist. She informed me that my PSA was 5.28. They would like me to come into the office for a prostate biopsy.
A couple of weeks later I had the pleasure of getting this biopsy (13 pops). The nurse told me that 4 of the biopsies came back positive with cancer and the doctor would like to see me and my family in two days to discuss these results. We saw the Urologist and he said I have microscopic cancer T2. My PSA was 5.28 and out of 13 biopsies 4 cores came back with a Gleason score of 3+3=6 on the left side. His recommendation was for robotic surgery to remove the prostate.
Later that same day we went to a “privately owned” Proton center about 5 minutes from my home in Jacksonville. It was a beautiful facility which was using the Proton beam radiation for approximately 6 months. We were very impressed with the doctor and his staff.
Two days later we went to another Oncologist in Jacksonville. He specialized in external radiation beam and Brachytherapy (seeds). This doctor informed us that he was one of the top doctors in the nation treating prostate cancer. He said that because of my enlarged prostate, he would not do Brachytherapy without first putting me on hormone therapy to reduce my enlarged prostate. He then recommended Photon radiation (VMAT Treatment). His VMAT was the latest state of the art with precise imaging tools attached to the gantry to help be extremely precise this the photon beam. Once again we were very impressed with the doctor and his staff.
I made consultative appointment at UF Health PI for 12/31/15. I hate to repeat myself but this facility also impressed us.
Now it is to my advantage to be living in Jacksonville Florida. I have more choices than most for treatment of my prostate cancer. I have locally Baptist MD Anderson Cancer Center, The Mayo Clinic Florida, T*** Oncology for Prostate Cancer, A***** Proton Center and UF Health Proton Institute. They are all excellent looking facilities with great reputations. It felt almost as though I was going to new car dealerships. I sent a lot of info to my sons, my sister and my wife (who is an RN). While my wife and I were eating out with another couple the subject of prostate cancer came up and to my surprise he had prostate cancer and had gone through surgery. When I asked his opinion, he informed me if he had been eligible to go through proton therapy that’s what he would have chosen. However do to some metal replacement parts in his hip and knee he was not a candidate for the Proton radiation. The choice was not an easy one for me. Watchful waiting was not an option that my family wanted me to consider. I decided to not wait while I still have choices in treating the cancer. Next is either surgery, external or proton radiation. All have the same prostate cancer cure rate of 98%. My wife was NOT in favor of me going through the surgery. It is the lowest cost and the quickest of the options. I was not happy with having to use a catheter for a few weeks. I looked at all the possible side effects and I chose to go with the Proton therapy. Of my two choices in Jacksonville for proton, I chose to go with UF Health Proton Institute because they have a longer track record of 10 years and I actually know 2 people that went to UFHPI.
Once I decided on UFHPI, I called and made an appointment to meet and agree on my doctor. Friday Jan. 22nd patient staging lead called to set up 3-day work up. Should begin Mon. 2/1 thru Wed. 2/3. Once this is done my Proton Therapy should begin on Feb. 29th and end April 22nd (39 days, 8 weeks). She also said I should have a colonoscopy prior. On Jan. 27th I was offered a new way to space the rectum from the prostate instead of the "balloon method". It is a gel, placed between the prostate and rectum. It's called SpaceOAR hydrogel and it is supposed to push the rectum out of the high dose radiation region. It's new in the US and had just been given the FDA approval. I agreed to be one of the first (a guinea pig) for the SpaceOAR gel. The Colonoscopy was delayed until Friday Feb. 12th.
On Feb. 18th I got the notice of my upcoming 3 day workup by FedEx. Monday I was scheduled to have a chest x-ray and an MRI of the pelvic area. Tuesday, I was scheduled to have my 4 gold markers inserted into the prostate along with the new SpaceOAR Gel being inserted. On Monday Feb. 23rd I had my 1st day workup, which was an orientation of the UF Health Proton facility, we then met with a financial counselor who took $$$$ which was my catastrophic out of pocket max. I had a chest X-Ray met with my nurse and went over the insertion of SpaceOAR Gel and then had a pelvic MRI with contrast performed. I had the SpaceOAR gel inserted and have never had any side effects from this procedure. For more info on this procedure, search for SpaceOAR on the cancer forums.
I started my Proton treatments on Thursday 3/10 at UF Health PI. My only complication was that I had a problem with slow urination. I learned that this was because of my enlarged prostate. It was getting irritated by the radiation and was inflamed. This caused the flow to get real slow. I was told by my Dr. to take 2 cranberry pills and an Alieve each day. On Monday 3/21 which was my 8th treatment, they put me on flowmax. It worked immediately. On April 21st I began to get freckles (slight sunburn) the size of a softball on both hips.
On May 3rd 2016, I completed my 39th treatment with the proton therapy. I was one of the first patients here in NE Florida to have this new SpaceOAR gel. Except for the day of insertion which IMO was painful, there have been absolutely NO side effects and it made each treatment a piece of cake not needing the balloon! I recommend a higher dose of pain killers before the initial insertion but that was just me. The two gentleman that had it done before me felt no pain at all. I weened myself off of the Flowmax and was no longer using it 6 weeks after my last treatment.
Important things to know about this facility:
1. Every second and fourth Wednesday at 10:15 AM there is a Men’s prostate support group and a separate companion’s support group that leads into the Wednesday FREE catered lunch.
2. Every Wednesday at noon there is a FREE lunch.
3. If you stay at the 3rd and Main housing there are usually plenty of things to do. I was told by some of the prostate patients that they felt like they were on a radiation vacation.
The two most important issues were that within 3 days after my final proton treatment my PSA was at 1.9 and my 6 month follow up PSA level is currently 0.6.
My new 1 year PSA is now down to 0.4 and so far no side effects at all!!