Proton therapy update

junbug,
I used Aleve and it was sufficient for burning sensation while urinating. AZO was also recommended as an alternative for the burning. Either would probably be fine. Your urethra gets irritated during treatment and this is usually the cause. Post treatment, I found I was more likely to have a burning sensation if I drank too much caffeine, so if you are coffee drinker, you might ease up. All these symptoms cleared up on their own relatively quickly. Good luck.
Regards,
Kris

I also went through Proton Therapy for my prostate cancer six months ago. I have not seen many posts with information on the choice of Protons so I will add my own information for others. 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 and it should have been between 2-4. She then said 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). A week later I called the doctor’s office to get my results. I got more than I ever expected, over the phone 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 the 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. I wanted to get consultations on all my options available to me.

Later that same day we went to a “privately owned” Proton center about 5 minutes from my home in Jacksonville. My family meet with the technicians, social workers, nurses and Oncologist. It was a beautiful facility which has been 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 spoke with a business acquaintance who a few years ago had gone through treatments at UF Health for prostate cancer, he was very pleased with his treatments and the results. I called UF Health Proton Institute for information and two days later I had an overnight package at my door with two books and lots over very informative information from UF Health PI. My eye doctor had a patient who had prostate cancer a few years earlier and offered to give him my phone number. That person did call me and informed me that he had prostate cancer and was treated at UF Health PI. He said that his treatment at this facility was outstanding. I made consultative appointment for 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, 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.

Just want to add, check with your health care provider!
I have BC/BS Fed and they have finally after many appeals found my claim for Proton Therapy to be not medically necessary or appropriate for me. It was noted that the standard treatment options in this clinical setting include Observation, External Beam Radiation Therapy with Photons, Cryotherapy, Brachytherapy or Radical Prostatectomy. My treatment has been deemed not medically necessary

Baddabing,

I too had BC/BS fed & they paid for my treatment, I paid $35 per treatment co-pay. Very surprised that they have refused to pay. Have you exhausted all your appeals? If you need to talk, PM me. Maybe you can use my treatment as ammunition for your appeal.

Regards,
Kris

I too have BC/BS, Anthem of St Louis. The Scottsdale Mayo tried to get them to authorize Proton Beam, repeatedly. They even refused Mayo's offer to charge the same as IMRT, which I ended up going with. I would think that they never should have treated you without prior authorization. Not everyone has 150k-200k lying around.

Basically it has been proven that Proton is no better than the other conventional treatments and thus insurance companies are more often denying it. They do not have to pay for treatment that is more expensive than other widely available treatment methods with similar effectiveness.

With all medical procedures (other than emergency) it is necessary that the patient confirm that the provider has pre-approved the procedure and is given that proof and an estimate of the out of pocket charges. As patients, we can not get any treatment until we have signed a treatment authorization that includes accepting the risks and consequences of the treatment, and a form accepting full financial responsibility in the event the third party payors do not pay for the treatment.

Back in December of 2015 BC/BS DID give my wife the OK to go ahead with UF Health Proton Therapy. The hospital had also been given the OK for me to have proton therapy at that time. On Feb. 17th I received a voice mail from a finance employee saying I was approved and will start my 3 day work up and to bring in on Monday Feb, 22nd my out of pocket deductible of $5,000. So I did as she asked and started my work-up. Throughout my 39 treatments I continually asked this finance person about my claim. She kept responding not to worry this is normal up until my last two weeks of treatment. Well I did worry and spoke with the Director of the Hospital who put his director of finance manager on this. This women was excellent. She told me and put in writing that if my BC/BS appeals were denied the hospital would NOT expect me to pay out of pocket since their finance person gave me the OK to start. So that made me feel better but I still as my post shows kept fighting. I am BC/BS Federal of Florida and I went in person to my local BC/BS Fed reps. They were very helpful also. They instructed me that BC/BS Federal allows me to after an appeal denial to send them a LETTER OF RECONSIDERATION. If that fails I have one more appeal to the Office of Personnel Management.
As I stated a few posts back BC/BS Federal has denied my letter of reconsideration on the grounds they feel it did not meet their requirement of being "medically necessary". BUT because back in December they gave my wife the WRONG information, on a one time basis they will pay the hospital all the charges but the are officially denying my claim. My wife and I fought and won this hard battle for coverage and to choose proton therapy.

It's just a shame that Health Care providers are trying to not allow us to chose the treatment we want to treat prostate cancer because of costs.