Treated 2010 · Posted 2010 · Updated 2010 & 2012
"My proton beam experience was more like a vacation in comparison to my other treatment options."
I have experienced three treatment options for prostate cancer starting with a prostatectomy to conventional radiation to proton. My proton beam experience was more like a vacation in comparison to my other treatment options. Also, my health insurance process to approve proton was far more traumatic than my actual proton beam experience, but thanks to the Proton Bob website, I was able to get the insurance coverage I needed proving that proton was far more effective than other treatments.
In 2004 at the age of 44, I was very fortunate that my employer offered free health screenings that included a PSA test. I almost decided not to participate in the health screenings since a year earlier I had a physical with my family Doctor indicating I was pretty healthy. The physical did not include a PSA because of my young age. Something kept gnawing at me to take the health screening and PSA test. The results of that PSA test changed my life. My first PSA came back as a 4.3, so my family Doctor referred me to a local urologist. I was not familiar with a PSA and my education was about to begin. The urologist did my second PSA that came back as a 4.6. We decided on a biopsy.
I kept telling myself that something other than cancer had to cause my higher PSA. How could it be cancer? Not at my young age. No history of prostate cancer in my family. I never took medications or been to a hospital. I had no reason to believe I was at risk for prostate cancer. We had five children with my youngest barely one year old. Well, the urologist called me at work to tell me I had the big "C". I had a Gleason score of 6 (3 + 3). It was devastating news. Two samples from different regions from a total of 12-samples were found to be cancerous. The urologist who performed my biopsy told me that I was a candidate for several treatments, including radiation, seeds and radical prostatectomy. Surgery seemed too invasive and none of the treatments appealed to me or my wife. In doing Web-based research I came across information about an option the urologist didn't mention: robotic laparoscopic prostate surgery. I do not recall coming across proton treatment at that time in late 2004.
The robotic surgery was very new in 2004 and not many hospitals were performing the robotic-assisted surgery at the time. I asked my urologist office for a referral on surgeons performing the robotic surgery prostatectomy and they referred me to the best robotic surgeon in the Cincinnati area - currently (as of July 2010) performing over 700 daVinci robotic surgeries. I was his 15th patient on January 25, 2005 and feel I made the right choice at the time with the research that I obtained. I was fortunate to have an excellent surgeon and my recovery was everything for which I hoped. The things you really get concerned about - like incontinence and impotence never became an issue.
The one issue was the results of my pathology. My prostate had a extraprostatic extension, a positive margin posteriorly (pT3a stage). This means my stage of cancer extends outside the prostate but not to the seminal vesicles. My report states ‘extension beyond the prostatic capsule into the extraprostatic fat." It not the best news you want to hear after going through surgery. So, I was excited that my first PSA test after surgery was less than 0.1 My surgeon said that we need to aggressively stay on top of the PSA tests every 4-months. It's possible my cancer could be in remission. I was fortunate to have undetectable PSA's for nearly four years (less than 0.05) and with very few side effects. Everything seemed normal for four years until my follow up appointment in spring 2009 when I had a PSA rise to 0.06.
My PSA's started to rise and were slow linear increases. September 2009 it was 0.09 and in December it was 0.10. My surgeon told me in September to start thinking about radiation treatment. The big "C" word came up again for the second time. "Salvage" conventional radiation treatment just did not sound right. Side effects from radiation can be moderately severe, especially when combined with a prostatectomy. These include rectal bleeding, incontinence, impotence and fatigue. I took the advice of my surgeon and made an appointment to begin radiation in January. Each visit to get my radiation treatment did not seem right, but what other choices did I really have? In just four treatments, I started to feel some slight burns and was told this was normal. It seemed archaic to me knowing that everything was getting burned inside my body.
The eye opener came when I found out about proton therapy through my dentist. He told me about proton treatment at IUHPTC (Indiana University Health Proton Therapy Center) in Bloomington, Indiana when I met with him for a routine dental check-up on February 8, 2010 during my 8th treatment course of conventional radiation. My Dentist completed proton treatment at IUHPTC successfully for his throat cancer in 2008. He told me about the precision of proton and I called IUHPTC to find out that I did qualify for "salvage" proton treatment. I could combine both my completed conventional radiation and proton for my treatment course. I was so impressed during my first meeting with the doctor at IUHPTC and the benefit outcomes of proton that I immediately quit my conventional radiation at 10-treatments.
Some might feel it was taking a chance to just stop my radiation treatments midstream not knowing if proton would be approved by insurance. No matter the outcome, I knew I was making the right choice. Proton has far fewer side effects than conventional radiation and is deposited on target, while the other forms of radiation are deposited on healthy tissue (three times more than proton). I never wanted all of my body parts radiated. I also have collateral damage from the surgery and was sensitive to the documented cases of secondary cancers with conventional radiation. No documented cases for secondary cancers have been found with proton.
The astounding factor for me with proton is its increased safe dose of radiation. The total dosage Gy (rads) prescribed for me if I completed conventional radiation was only 68 Gy. I could not, nor should receive more than 68 Gy with radiation because of its harmful side effects. A proton only treatment plan for prostate cancer is typically 72 Gy. My salvage treatment plan had a slightly increased dose (20 conventional + 54 proton = 74 Gy) to allow for tumor proliferation that may have occurred in the interval between my conventional and proton treatments. The increased radiation dosage crucial for cancer remission is suppose to be 72 Gy, and only with proton is this possible with minimal side effects.
Proton seemed the natural choice for me so I never thought it would be denied by insurance. A quick decision was important for my treatment plan to work combining my completed 10-treatment of conventional radiation with proton. The wait for a decision became agonizing as weeks passed. Nearly four weeks passed to only find out that my insurance denied proton because it was "not medically necessary". IUHPTC sent in a second request that was denied four days later. Being denied this important life saving treatment almost felt as bad as being told I have the big "C". It was traumatic, but I was determined to win and wrote my own appeal to an independent board of doctors.
I spent a great deal of time researching proton and found the Brotherhood of the Balloon website (www.protonbob.com) extremely beneficial. Thanks to the "Insurance Strategy File" related to the website, I was able to obtain the ammunition to fight the battle. According to the website, most men who fight the insurance battle through the appeal process eventually win. The website also has a member list which I used as a weapon in the battle. I found someone who had the same insurance as me and was reimbursed for proton. I requested that my insurance provide me the same consideration. The insurance company contacted my HR director and asked how I got the name of someone they had previously reimbursed for proton. The HR director said "He just did a lot of research".
My appeal took more than 40-hours to research and write. It is 16-pages with documentation and backup. My appeal outline included the following: 1- Proton for prostate cancer is neither experimental nor investigational, including being approved by Medicare and most insurance; 2- Reliable evidence demonstrates that proton is superior to conventional radiation, especially in my case; and 3 - There is sufficient clinical data comparing proton to conventional radiation.
I waited nearly another week and broke down emotionally when I was told that my appeal was finally approved. The independent panel of doctors who reviewed my appeal were impressed enough to approve 100% of the cost for my proton treatment plan. I teasingly call my appeal paper my $100,000 A+ research paper.
I really want to thank Bob Marckini (Proton Bob) and the volunteer insurance specialist Jeannie Chase who assisted me with the insurance strategy. The administrative staff at IUHPTC was also very helpful.
Proton Experience at IUHPTC
I knew that proton treatment at IUHPTC was right for me. It is located on the beautiful campus of Indiana University where I attended graduate school in 1987. It is only a 2 1/2 hour drive from my home. It was extremely important that I could spend weekends with my wife and five children, ages 6, 9, 11, 15 & 17. I stayed at Jill's House which is a comfortable, affordable home like residence for patients receiving treatment at IUHPTC. My children loved to visit me at Jill's House and felt it was like a vacation. I felt it was my peaceful haven home away from home where I made many new proton friends.
I took 7-weeks of FMLA paid leave from work for my 30 treatments at IUHPTC. The IUHPTC staff, in particular the Radiation Therapists, really made my treatment experience comfortable and at times, even enjoyable. From the very first day when I was so nervous to my last day of treatment, they made me feel at ease in an unfamiliar setting. Their enduring patience, smiles and positive attitudes made my IUHPTC experience a great one I will always remember.
During my treatment course and about two weeks thereafter, I felt irritations and uncomfortable at times but it was nothing in comparison to my surgery or the burns I felt with conventional radiation. I was impressed with all of the IUHPTC medical staff who checked with me on a daily basis and really showed they care. They are wonderful people.
Now, about two months after my last proton treatment I am feeling great. I really don't have any side effects or complaints. This is wonderful considering my additive surgery and radiation treatments. I had my first PSA check today since proton and it was 0.06 - This is the best news I could possibly hear and share with my family. It seems my proton salvage treatment is working.
Thank you, IUHPTC !!!
I have some great news to share. I had my six month check up at IUHPTC on November 28, 2010. The doctor told me that I was on the path to cancer remission. My PSA was less than 0.04. The IUHPTC doctor states "The speed of the PSA decrease indicates that the proton beam is effectively working on the cancer cells." My first PSA three months after proton was 0.06 and then less than 0.04 in November (six months).
My family and I moved from Mason, Ohio to Elk River, Minnesota because of my employment. I was fortunate to find a new position after losing my position in Ohio (I support a family with five children).
Life is going well. I'm staying active with my family, work, and church.
The best news is that I had a follow-up appointment with a new doctor here in Elk River. My PSA as of August 2012 is still undetectable at 0.06. And, my doctor stated that I do not need to see him for one year based on my positive results. However, he reminded me that I am a cancer survivor so I need to be checked once per year. This will be the longest period of time I will not see a doctor (related to my prostate cancer) since my proton treatment was completed in May, 2010.