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MP's full story, which is worth reading, is here MP
I can understand his concern only too well. Time and again we are told that the PSA is a simple test that can save us from a certain death because it can diagnose prostate cancer - we just had a man on morning TV saying just that. BUT, as MP knows well, PSA is NOT prostate cancer specific, so his elevated PSA level is probably not due to PCa, especially as it is not moving. So I'm with Fuller in saying it may be too early to lable this as a 'failure' although no doubt it would fall into one of the 200 or so definition of 'failure'.
It seems to me to be much more likely to be related to the outcome of the therapy. We see side effects - often lower level with proton beam therapy - from all radiation therapies. This could well be such a side effect, but of course it is a worry.
Hopefully MP will find a way of coping with this issue.
In fact, a close friend who opted for proton two years before I was diagnosed ended up being a complete failure and he died of PCa at about 63 years old. But for his experience, I likely might not have even been aware of proton. Doctors and others most notably did not mention proton to me when I was searching for what to do! I had to explore the subject entirely on my own at the begining.
I do not know of other such dramatic stories so personal to me, but since proton is a “local” protocol, it should be no surprise that it sometimes results in failure. I have heard of other "failures".
That said, I still have not heard of proton “horror” stories comparable to seeds migrating as with Louis Farrakhan or some such similar stories with botched up surgeries or EBRT of old. Early on with this journey of ours, I concluded that if the disease is metastasized significantly, then a local protocol of any sort is likely not going to succeed as a “cure”. At the same time, I early on also discovered that doctors and scientists routinely are not able to tell in many cases when the disease is truly metastasized and untreatable with a local protocol.
I have personally heard of men diagnosed with psa’s well over 400… one even was said to be “20,000” [I considered this report unreliable, however]. Also, Gleason’s of 9-10 who have been treated successfully with proton too. In short, without a well-founded supplemental diagnosis of metastasized disease that is clearly untreatable with a local protocol, proton has sometimes proven quite effective despite the high psa or Gleason scores.
I suspect the proton docs are careful not to try to treat anyone they have a strong suspicion is a case of well-metastesized disease. However, there also are some very stubborn men too who might insist and want to take the chance that proton still might work to their favor. I now look back and think maybe that was the case with my friend to opted for proton but died a year or two later of PCa anyway. I am not sure.
Bottom line is most proton cases are very average GS 6 cases with lower, typical psa’s… and as you could point out, cases where watchful waiting might work out just as well. A significant proportion of proton cases, however, are salvage (failed surgeries or failed seeds)… and some are retreads (repeat proton cases).
From all the studies I have read: proton has the same failure rate as IMRT in low risk PC and a slightly higher failure rate in high and intermediate risk.
JohnT
I received an E-mail from Dr. Rossi at LLUMC last evening. He believes it still may be post-treatment inflammation. He has seen it occasionally in younger patients. His advice to me is to have a PSA once a month for the next three months to ensure it is not rising. If it is rising he would like a re-biopsy. If it remains stable or starts to fall we will continue to monitor it as it could take a couple of years for the PSA to drop.
Dr. Carl Rossi is great! He was my doc at Loma Linda also. I think that is great advice but after several months if the PSA is stable or falling I personally would go to every two or three months for a period of time. Just remember what I said about pre-blood draw precautions to avoid "exercizing" the gland. What ever you do, I would send Dr. Rossi a letter or e-mail with the current PSA result each time.
All following this thread: The fact that Dr. Rossi has seen this in younger patients is interesting and is a good data point. Dr. Rossi has been at LLUMC for a long time and is or was their preimminent radiation oncologist. He has probably seen literally thousands of proton patients at LLUMC, so he probably knows as much about the effects of proton therapy for prostate cancer as anyone. See:
http://www.protons.com/about-us/doctors/carl-rossi-md.html
