The first couple misconceptions are mine. I believe I have written that I thought there were about 40 or 50 patients in the program. I learned tonight that the proton department can treat up to 160 patients a day. Currently the program is slightly under enrolled; it has about 140 proton patients. Of that number approximately 65% have prostate cancer. That means there are slightly over 90 prostate patients in the program—almost twice my estimate.
Secondly, I wrote some time ago that I had not met anyone who was experiencing any negative side effects from the treatment. I have now met several who are experiencing the same side effects—urinary problems. These take the form of urgency to relieve the bladder and then painful burning sensations combined with the inability to urinate. These side effects are alleviated by Flomax. So there are side effects during treatment, but compared with the horror stories I've heard about other forms of treatment, these are almost laughable. I personally have not experienced any side effects to date.
I frequently receive well wishes from friends who express concern about the difficulties I must be experiencing. For instance, my mother always urges me to stick with it and see it through. No doubt these concerns find their basis in reports about the suffering that goes along with other forms of cancer treatment—surgery, traditional radiation, chemotherapy, and (for prostate cancer) hormone therapy. At the risk of losing the support of my friends, support that I value greatly, I should make it clear that no such difficulties attend this form of treatment. A pastor who is in the program said he's afraid to tell his congregation how easy it is and how much fun he's having for fear they'll all stop praying for him. It's certainly an inconvenience to be away from home for 2 1/2 months, and for me that entails being away from Amy—a real deprivation. There's a fair amount of expense involved including apartment rental, travel expenses, insurance deductibles, etc. Then there's that daily balloon. But that's it, as far as unpleasantries are concerned.
A good friend recently said she's waiting for my blog entry that will be titled "Cured!" I had to tell her she's probably in for a long wait. As near as I can tell it works like this: I get the set 45 treatments which adds up to 81 Gray (a measurement of radiation). Then they send me home. No pronouncement of cure. I will get periodic checks (PSAs, etc.) by my doctors at home and may, at my option, come back here after 4 months for a check up. I will continue to monitor my PSA for years—probably until I have no more vital signs. The PSA should descend to around 1, but a fair number of patients experience a "PSA bounce" after a few years with the PSA going up, then down, then up, then down, then eventually staying down. So when "alumni" come back and attend the support group meetings, they are always asked what their most recent PSAs are. They have uniformly been below 2—often below 1. Again, no pronouncements of cure, but a general assumption that the cancer is gone if the PSA stays down.
By the way, the idea of a set number of treatments sounds like a one-size-fits-all regimen. That's also somewhat of a misconception. Most of us, indeed, get the standard 45 treatments. But some are in an experimental program where they're receiving double doses for a shorter time—20 treatments. Others receive a combination of proton and traditional radiation, especially if there's reason to believe the cancer has spread to the lymph nodes around the prostate. Some patients are also receiving hormone therapy. So indeed the doctors tailor make each patient's treatment.
To those readers who are sending thoughts and prayers my way: please don't stop. Having written this entry, I have the same fears as the pastor I mentioned above. But I think it important to be honest about my situation.
Treatment count: 18 down, 27 to go.
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