Treated 2010 · Posted 2016
"It has been more than five years since my proton treatment and I feel great. My PSA has leveled off at about 0.3 and the good part is -- no more DRE’s. My wife and I have both retired. We spend most of our time doing the things we want to do. We work on staying healthy so we can stay active for as long as possible."
My First Introduction to Proton Therapy
My journey to Loma Linda started in 1983 when I met my wife. We were both working at a medical device company, but my connection to proton beam therapy (PBT) had nothing to do with where I worked. It just so happened that my wife’s cousin worked at the Jet Propulsion Laboratory in California studying the effect of radiation on astronauts in space. This was also not a direct connection to PBT, but over the years when we came to California to enjoy the beautiful weather we would visit him and his family during our trips out west. We were living in Minnesota at the time and that was always a nice place to visit in the winter.
During one of our visits in 1994 her cousin told us he had a new job and wanted to know if we would like a tour of where he was working. We said “sure” that would be interesting and met him at his new place of employment in Loma Linda, California in the medical research building. He was working with the proton accelerator to study the effect on radiation on the cells of small worms exposed to radiation. We toured the lab and then he took us over to the medical center and showed us a new treatment they were using for cancer, proton beam therapy. We saw the synchrotron and went into something called a "gantry" where the protons were delivered to treat patients. He also showed us how they treated prostate cancer. We saw the masks that were used and they would stop the beam right where the tumor was to avoid radiation damage to the surrounding tissue. It was fascinating.
A Little Family History
My father was diagnosed in the mid-80's with prostate cancer and died at the end of 1997 at the age of 74. He followed the usual course of treatment at the time; surgery, radiation, hormones ... and he eventually died of bone cancer.
Fast forward to 2010, I was in Hawaii on vacation and had a kidney stone attack while zip lining. If you have ever had a kidney stone you know they are painful. When I returned home I made an appointment to see a urologist. By then we were living in southern California. We had moved there in 2006 after 50 years of living in Minnesota.
I have had a kidney stone attack in the past so I just wanted to go in and have things checked out. As part of my visit that day the doctor said, “As long as you are here, let’s do a rectal exam”. That didn’t sound fun to me, but I agreed.
After he was finished he said, “I am setting you up for a prostate biopsy just to make sure everything is okay.” I was unaware how the biopsy process worked, but how bad could it be? Well, I found out the following week. It seemed like a strange way to find out if you have prostate cancer -- by poking holes in a potentially cancerous organ. This is the way it has been done for decades, so I had to assume they knew what they were doing.
The Dreaded Diagnosis
A week later the results came back and the cancer was confirmed. I had a Gleason score of 6 and I was stage T2a. The surgeon recommended surgery, which is not surprising. I asked him about other treatments and he told me that surgery was the best for me since the cancer was contained. He told us about radiation and hormone treatment, but he said that would come later ... as needed.
I asked the big question, “Have you ever heard of proton therapy?” He answered, “That is just experimental and no different than standard radiation.”
We had a discussion about side effects for the different treatment options and the answer was always the same: There were few side effects no matter the treatment option, but surgery was the best. I found that hard to believe so I started my own research and discovered a much different picture of the how the treatment options differed.
My Own Research
I found two websites that were the most helpful. The first was a support group called yananow.net and the other was the national cancer data base known as NCCN.org (National Comprehensive Cancer Network). Yananow was an international group of men seeking and sharing information about their experiences with prostate cancer. The range of treatment options on this site covered everything being done in the world at that time. The information included cost, length of treatment, outcomes, and most important to me -- side effects.
By far, the least side effects were from radiation and among all those, proton therapy had almost no side effects at all. The information on the NCCN website presented a statistical analysis of the mortality and survival rate for all the different treatment options based on the stage of cancer the patient at the time of diagnosis.
In my case that was 93% for all types of treatment. Since the standard of care has always been surgery, the data was heavily weighed for that particular treatment. None of the data included side effects per treatment. All of this information will be important later in the story.
My Treatment Decision
I decided to go to Loma Linda University Cancer Center in southern California to get a better understanding of proton treatment by talking to actual patients. I found out about the support group meeting at the hospital and decided to attend one of them. That was the first time I met Dr. J. Lynn Martell who had been leading the group for several years. We met some of the patients and had a good time visiting and discussing the treatment process. Dr. Martell was kind enough to give me a copy of Bob Marckini’s book, "You Can Beat Prostate Cancer" and told me about “The Brotherhood of the Balloon.” I would soon understand the meaning of the group's name.
After that evening my mind was made up. I decided to move forward with protons at Loma Linda. When I read Bob’s book it was like I was reading about my own experience. It was so helpful in deciding how to treat my cancer.
Medical Insurance Issues
I made an appointment to start the process by going in to meet with the staff to give them my insurance information and get pre-approved to start the treatment. The person I met with said that I had very good insurance (Cigna PPO) and there shouldn’t be a problem getting approval.
I had my consultation at LLUCC on May 4, 2010. The experience was much different than the others I have had in that I was treated like a person and not a patient. This part of the procedure was covered by my insurance. After my doctor approved the treatment, my claim was submitted to the insurance company.
Cigna refused to pay for the treatment. Their reason is that there are "equivalent treatments" available with the same outcome. They also consider the cost of proton therapy to be much greater than surgery. Since that is the "standard of care," that is the only treatment they would approve. As I mentioned earlier, the outcomes are somewhat equivalent for all the different treatments, but the side effects are dramatically different. However, that does not matter to most insurance companies.
After several appeals, I decided to move forward with my treatment by paying for it myself and continue fighting my insurance company. The interesting thing about paying cash for the procedure is that it is much lower cost than what is actually billed for the treatments. Also, after months of fighting my insurance, I found out that the negotiated cost for the procedure is $52,000, about 25% of the billed amount. The reasons for not paying for the procedure seemed not to make any sense after discovering that information.
Treatment Begins
I went back out to LLUCC on June 1, 2010 and had my CT scan and pod fitting in preparation for my treatment. Treatment began on June 8. I had to pay cash up front to start the treatment and I hoped to get the money back after the insurance paid.
After discussing the issue with my company, they agreed to pay the claim. The company I was working for at the time was self-insured, which means they pay all the claims in full approved by the insurance company. Therefore, they can override any decision made by the insurance company. Cigna maintained their position but paid the claim anyway.
All during my treatment I kept working. I had no side effects that caused me any problems other than as the process went on the need to urinate more frequently got worse. This was not a bad trade-off for getting rid of the cancer.
I would go to the patient support group every Tuesday afternoon and the pot luck dinner as offen as possible. The Wednesday night support group was very helpful and fun to attend (and not just for Lynn’s jokes).
Treatment Ends
I completed my proton treatment on August 10, 2010. I said farewell to the group as everyone had done before me and got back to my life.
I had my first PSA in mid-December and it was down to 0.9 from 3.8. The only side effect at the time was urinary frequency, but I had that before the treatment. The main problem seemed to be emptying my bladder, but it had only been five months after treatment so I suppose I needed to be patient.
Everything else worked just fine! There was a decrease in seminal fluid, but that was a given going into the treatment.
My Life Today
It has been more than five years since my proton treatment and I feel great. My PSA has leveled off at about 0.3 and the good part is -- no more DRE’s. My wife and I have both retired. We spend most of our time doing the things we want to do. We work on staying healthy so we can stay active for as long as possible.
That’s my story about my experience treating my prostate cancer with the best possible method in the world -- proton therapy. I am always happy to talk to anyone who wants to know more about my experience and what it is like to be treated with protons.
Please contact Deb Hickey at the Brotherhood of the Balloon if you'd like my contact information.