Treated 2002 • Posted 2003
"I was rather stunned by the enormity of the word 'cancer', but felt a certain calmness brought about by a sense that it was very treatable and that this was all part of 'God's Plan' for my life."
My diagnosis of prostate cancer came as no surprise to me, but the timing was not at all anticipated. You see, I was always mindful of the fact that my Dad and all of his brothers had battled with prostate cancer. So, when I heard of a clinical study for “high risk males” at the University of California Irvine, I decided to participate. My awareness of risk was kindled two years earlier when I was found to have a PSA of 3.5. This prompted a visit to my urologist who performed a biopsy of eleven (yes, I counted EVERY ‘SNAP’ without anesthesia!) locations only to determine that no cancerous areas were evident. It was not really explained to me at the time that those findings were not conclusive evidence that I was not at risk, since cancerous spots can still exist in areas not specifically biopsied. However, I was still mindful of a looming problem.
I read somewhere that the herbal supplement called “Saw-Palmetto” was helpful for preventing prostate cancer, so I began taking it shortly after my biopsy. I continued this regimen right up to the time of the UCI study, where my initial PSA was determined to be 2.5. Being 51 years old, this was not deemed to be a particularly high PSA. But the fact that the number had dropped should have been a ‘red flag’ that something was not right.
Participation in the UCI study required a screening process of many questions, a DRE (digital rectal examination), and a biopsy (WITH anesthesia this time!). The DRE was performed by a young doctor who detected a very slight abnormality on the left side. He noted this on the report but I didn’t pay much attention due to his lack of long-term experience. Besides, if there were any problems, the biopsy would confirm his findings. Well, the biopsy was done by a very experienced Urologist and went very well. It was early December of 2001, so the Christmas season would serve to put all of this on the ‘back burner’. That was the case until the day after Christmas, Wednesday, December 26th.
This day will forever occupy a place in my long-term memory. My wife, Lynette, and I were relaxing in bed at 9:00am when the phone rang. It was one of the doctors from UCI informing me of the positive results of the biopsy. They had found indications of cancer on the left side of my prostate. I was rather stunned by the enormity of the word ‘cancer’, but felt a certain calmness brought about by a sense that it was very treatable and that this was all part of ‘God’s Plan’ for my life. My faith would play a large role over the next few months as this new challenge unfolded.
Tests indicated a “Gleason” score of 6 (3+3) and a “Partin” rating of T2a. This, of course, was all new to me. However, in the next few days and weeks I would take a crash course in ‘Prostate Cancer 101’. This new discovery seemed to counter the initial UCI PSA of 2.5, so more blood work was performed. A new PSA of 3.8 still didn’t seem right. That is, until the UCI doctors did some research and found that Saw-Palmetto has been shown to cause an approximate 50% decrease in PSA scores. Their theory is that the Saw-Palmetto ‘masked’ my true reading, thus my 3.8 was actually a 7.6 (plus or minus). The doctors at UCI were very through and articulate in their explanations and suggested, of course, that I get in to see my own primary care physician ASAP.
This is where my wonderful and loving wife jumped into action. Over the course of the next few weeks she found a way to open doors to a plethora of doctors and tests that would have been unimaginable to the average person. However, this was no ‘average’ person. This was LYNETTE….. SUPER PATIENT ADVOCATE! The very next day, Thursday, I was conferring with my primary care doctor. The following day I saw a Urologist and a couple of days later, an Oncologist. The Oncologist spent three hours explaining a host of options for treatment. At the top of the list was, of course, surgery. Followed by brachytherapy (seeding), and then conformal 3d radiation. Proton radiation was briefly referenced in some of the material, but the doctor had virtually no experience with it since it was not offered within my HMO ‘group’. I would come to find out the importance of that word, ‘group’ as the implications of each treatment modality was explained.
The surgical option was quickly ruled out as too risky, even after conferring with some of the most experienced doctors at Johns-Hopkins. Their numbers for incontinence and impotence were better than most, but they only accepted certain candidates (of which I probably would qualify) for their ‘nerve-sparing’ technique. Besides, this was no small surgery. They suggested that I should donate blood prior to the operation because it is so invasive. The ‘seeding’ option was promoted by the Oncologist, who would perform the procedure with the assistance of the Urologist (see any connection here?). I was seriously considering this option until I finally found out that the Oncologist only performs a couple of these procedures a month and is in his early thirties. Call me a skeptic, but the old adage “practice makes perfect” kept coming to mind. Don’t get me wrong. This was a very sharp Oncologist who was extremely helpful and informative. But, frankly, the thought of having some radioactive pellets in my body for the rest of my life just didn’t feel right. There was also a warning of a chance of seeds migrating to the lungs. Nope, I don’t think so!
One option that was not discussed but was performed on a friend was ‘High-Dose Brachytherapy’. My oncologist informed me that there were no doctors within my ‘group’ who performed this procedure. This actually sounded better than ‘seeding’ in that it was performed in a hospital over the course of a couple of days during which radioactive ‘rods’ were inserted and withdrawn to bombard the cancerous area. Thus, the procedure could be over in a short time with a very small recovery profile and minimal side effects. Again, though, if I chose this option it would have financial implications that could be very costly.
In the meantime, I went in for a bone scan which turned out to be negative, meaning that there was no indication that the cancer had spread. However, my primary care doctor (more particularly, Nurse Practitioner Mary Joswig) was very concerned that I should be taking a testosterone- inhibiting drug to slow down the spread of cancer while all these options were being explored. You see, she could tell that I wasn’t going to be content with the ‘group’ options and wanted to be on the safe side if things should drag on. They ordered the drug and scheduled for it to be administered. However, as things played out, I chose not to take the ‘hormone ablation treatment’. After speaking with many people, not the least of which was the doctor who ultimately treated me, I decided against it.
In my quest for an answer I spoke with two men, referred by friends, who had been through Loma Linda’s Proton treatment program. Their distinctly positive input coupled with internet links and radio advertisements that I had heard prompted me to contact LLUMC. Actually, Lynette contacted them and requested an information packet and also requested that someone contact me personally. Much to my surprise I was soon contacted by Dr. Les Yonemoto. I would later come to find out that he is the Chief of Staff for the LLUMC Proton program. Dr. Yonemoto spent a solid hour with me on my cellphone answering all of my questions and making me feel like we had all the time in the world. I was very impressed with what he had to say as well as his general demeanor. He explained how the precise application of radiation to the prostate and surrounding area could be accomplished with Proton Beam radiation with a minimal amount of side effects; most notably a very low percentage of the occurrence of incontinence and almost no impotence. A subsequent phone consultation solidified my resolve to choose Proton therapy. There was only one small problem…
My HMO ‘group’ would not approve an ‘out of network’ treatment when, in their opinion, several viable options with equally successful results were available within their system. My first approach was to research the internet for some answers. I’m happy to say that Bob Marckini, one of the founders of the “Brotherhood of the Balloon” organization and website, was a tremendous help in hooking me up with others who have been refused coverage. It turns out that many insurance plans refuse coverage for a variety of reasons. However, there are attorneys who specialize in this area. And so I began to contact them for an answer. In the meantime we had worked our way up the daunting insurance provider ladder to a helpful supervisor within the Blue Cross system. She was actually part of CaliforniaCare which oversees the funding for local HMO ‘groups’. During one of our conversations I was made aware of the fact that I was in the midst of my ‘open enrollment period’, during which I was free to switch HMO groups or switch to a PPO plan. As it turned out, I found this out within a few days of the cutoff date of January 30th. My #1 patient advocate, Lynette, immediately went to work to see if the HMO ‘group’ in Loma Linda would cover the treatment. After being led to believe that it would, in fact, be covered we quickly filled out the necessary papers to switch to the Loma Linda Medical Group. The supervisor was extremely helpful with expediting the paperwork from their end. She did, however, inform me that my new address would need to be within 25 miles of my new group at LLUMC. This was simple, due to the fact that I planned to relocate to Riverside. Can you believe that Lynette was able to arrange for an appointment with my new primary care physician on Friday, February 1st (the first day of coverage)?! My primary immediately referred me to Dr. Les Yonemoto for treatment. Remember him?…. the humble and caring doctor who contacted me out of the blue?!! There happened to be an open position immediately so that I did not have to wait in the ‘Queue’ for an available treatment slot. The insurance saga was all but over except that the official ‘approval’ had not been given. In a final show of what I (we) believe to be the power of prayer, one of the billing administrators went out of her way that day to confirm the approval and called Lynette on her cellphone so that she “wouldn’t have to worry over the weekend”. We sat in the parking lot at Loma Linda Hospital, just having seen Dr. Yonemoto, embracing with tears of joy!
I began treatment on February 25th and completed on April 19th. This turned out to be an amazingly brief 4 months from diagnosis to the end of treatment. The staff of professionals at Loma Linda were not only attentive and caring, but they had a great sense of humor as well. I just can’t tell you how many times I was able to laugh! Although it was no small effort to get myself to Loma Linda on a daily basis (on time each and every day I might add!) for eight weeks, it was worth every bit of the effort. Initially, I thought I was fortunate to live close enough to not have to take up temporary residence in the Loma Linda area like so many others. However, continuing to work full time and commuting on a 200 mile per day trek reminded me that THEY were the fortunate ones. They could take a two-month vacation and leisurely get treatment while enjoying the benefits of the Loma Linda gym and pool and the surrounding mountains and desert.
And speaking of ‘Them’, I mean the very interesting group of men and their wives from all over the world who are now my ‘brothers’ in the Brotherhood of the Balloon organization. Further explanation of the meaning of this elite club will require a personal conversation… if you know what I mean! Although I felt like the ‘kid’ in this group of mostly older gentlemen, I gleaned some very provocative and inspirational bits of knowledge that I will always carry with me. And the Wednesday evening support group meetings were nothing short of amazing! The leadership of Gerry Troy and the dedicated volunteer chronicling of events by another BOB member, coupled with some very interesting guest speakers, made each night memorable. Not to mention the testimonies of the most interesting cross section of professional and blue collared workers that one could imagine.
All in all, I just couldn’t be happier with the way that things have turned out. As you can probably agree by the above referenced chain of events. I am certain that the many unusual events that made for a swift treatment and minimal side effects were, indeed, brought about as a direct result of the prayers of so many friends and relatives who have held up my needs to our Lord. And I am equally confident that the ultimate outcome of this incredible treatment will be a complete eradication of this cancer.
Brian Butchko - Carlsbad, California