Treated 2001 · Posted 2002
"I went into high gear learning all I could about options and outcomes. This involved talking to friends and their friends; reading all the books and articles; researching on the web; and visiting Memorial Sloan Kettering, Massachusetts General, Johns Hopkins and Columbia Presbyterian."
I had watched my PSA yearly since 1992, right after the test became available. It started at 1.5, but began a modest uptrend by 1996. Being an engineer, I graphed it for easier analysis. By 1999, it had reached 4.3, so I had a needle biopsy in the urologist's office, which was negative, to my relief.
Lessons: a) graph your PSA and look for trends, not just levels; b) be aware that cancer cells can follow the needle path, so biopsy can spread the disease if it hits a tumor.
A bit over a year later, PSA had climbed at an accelerated pace to about 5.5, so I had another biopsy, this time in a hospital with one guy using ultrasound to guide the needle and the doctor taking the samples. This time it was positive with Gleason 3+4=7; stage T1c; tumor not palpable. I was only 63 and otherwise healthy.
Lessons: a) biopsies are less painful and more accurate when done in the hospital with two people; b) use a urologist who expressly does *not* do the operation, so he will not hustle you straight into his operating room; c) do not assume that a negative biopsy means you are all clear but, instead, accelerate the frequency of PSA tests to every 6 to 9 months, as long as your PSA continues rising.
I went into high gear learning all I could about options and outcomes. This involved talking to friends and their friends; reading all the books and articles; researching on the web; and visiting Memorial Sloan Kettering, Massachusetts General, Johns Hopkins and Columbia Presbyterian. I assembled a large three-ring binder on useful material, and another on possible places to go for treatment. In spite of having a full time job, I spent an average of four hours a day for over three months working the issue. I was particularly eager to learn whether the tumor was tangential to the capsule or fully inside the gland, so I euchred myself into a test invented by UCSF and being researched at MSKCC called Spectroscopic MRI. It showed the tumor to be inside the gland, which provided evidence that I had time to finish the research process. Of equal importance was getting a really good pathologist at Johns Hopkins named Epstein to read my slides and confirm the Gleason score. He did so, disappointingly, as I wanted a 6, not a 7.
Lessons: a) spend enough time on research to be confident of your choice, even if it fails; b) pick a center of excellence in whatever therapy you choose, or even investigate; this is more important than the specific therapy you select (in other words, the best surgeons, the best radiation specialists, the best brachytherapists all offer similar chances of recovery of about 92% for localized cases, and depending on PSA, Gleason, tumor location, etc., but less skillful practitioners in each specialty can be very dangerous; so go to the best people you can; c) ensure that you personally confirm specific facts in your case that are critical to smart treatment choices.
Early in this process, a relative called to insist I talk to Paul Versaw, a retired Coast Guard Admiral and early PCa patient at Loma Linda. I called him, and he simply ordered me to look into Proton Beam. So I said "yes, sir", and did.
We live in CT, so it took a while to get to CA for a visit. Meanwhile I talked to Dr. Rossi and Sharon Hoyle, and became intrigued with the technology and the lack of side effects. Interestingly, every doctor I talked to from East of the Mississippi said essentially "don't bother, it is too new and too experimental". About that time, I was advised to see an oncologist, so I did, and it was great relief to talk to a cancer specialist, as opposed to someone who is peddling one form of treatment or another in a competitive marketplace.
Lessons: a) don't listen to those who pooh-pooh PBRT; b) have the courage to draw your own conclusions; c) consider getting advice from an oncologist, as opposed to either a radiologist or urologist who are offering competing cures for big money.
After visiting LLUMC, it became one of a few options I was still considering. I had rejected EBRT and surgery, but was still looking at brachytherapy at RCOG in Georgia, where they do a good job. I was also intrigued by a remarkable nutritional approach offered by Donnie Yance in Ashland, OR.
About this time, I learned of Bob Marckini from Sharon Hoyle at LLUMC and so I called him. He told me of his pre-decision survey of former PBRT patients. Long story short, he took me through his survey results (anonymously) and that was it. The net effect of hearing directly from 30 happy patients was overwhelmingly convincing. So we signed up, got scheduled, got podded, found a place to stay, put our lives on hold and went.
Lesson: Listen to former patients of whatever place you are considering going before you decide to go. The BOB website is a good chance to do that re LLUMC; thus this story.
I commuted one hour each way from Rancho Mirage every day, because we like the desert, and that worked fine. In fact it was best winter I can remember. I did my work by Internet every day, except for the 3 hour round trip, when I listened to books on tape in the car. We hiked, biked, played racquetball and tennis and felt great. We took a tiny place in Redlands in case I felt tired, but we barely used it. I would not rent the local place again.
Lesson: Make the trip fun by enjoying the myriad recreational opportunities that surround Loma Linda, including the Coachella Valley, which is heavenly in winter.
The hospital and staff were marvelous. The treatment worked, as my PSA at 18 months is down from 7.5 to 1.4 and dropping. Apart from some urinary frequency during treatment, there are no material side effects and all plumbing is working properly...a little differently, but not badly. So I cannot recommend PBRT more highly for patients who have the medical conditions, the patience, the time and the self-confidence to do it.
Lesson: Half a dozen people have since gone to LLUMC after hearing about it from me and all have been happy. About the same number have opted for surgery, because they lacked the time to spend in CA; for those who "want it out", I consistently recommend Peter Scardino at MSKCC, and all seem happy with the result. So, again, pick the best people.
My insurance finally paid for 90%, but refused to make their decision until after treatment.
Lesson: Don't fight the insurance people before treatment because you will get angry and that will make you sicker. Get treated; get well, and then tackle the insurance people. Between LLUMC and the reasonableness of people over time, you will succeed, and after all, it is the treatment, not the money, that matters.
Doug Ayer
Update January 2009
I 'graduated' from 40 treatments of PBRT at Loma Linda almost exactly eight years ago. My PSA, which was 7.5 when treatment started, now is about 0.15, and I now check it only annually. So, it seems likely that the cancer is defeated, but I never take that for granted. And I am now nearly 72 years old.
OK, what about the potentially tiresome side effects?
I urinate fairly frequently, probably as a result of taking a diuretic for an unrelated condition, but I do not suffer from incontinence. Only exception is a drop or two when I sneeze or laugh too hard. Who knows whether that would have happened anyway?
As to the even more delicate functions, it all still works, admittedly with the help of Viagra some of the time. I have said this before, and it continues to be true: post-treatment sex is different than pre-treatment, but not 'worse'; in fact, in some respects it is better!
So, I remain 100% satisfied with what happened to us at LLUMC. Somewhere around 50 men have gone to LLUMC at least in part because of my input. Without exception (as far as I know) they are glad they did. That is truly remarkable, in my view, and a gigantic tribute to the quality of care offered there.
Doug Ayer
doug@ayer.net