This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
Does anyone know of anyone who has failed Proton treatment? In all my reading both before treatment and since I have never heard a man say that his proton treatment failed which is one of the reasons I opted for Proton. I've searched through the mentor experiences and can find no mention of Proton treatment failure.
Unfortunately I may be joining a very small club! I'm 15 months post-treatment for Proton at LLUMC. Nothing remarkable about my treatment. However, my PSA has not dropped at all. The highest it was pre-treatment was 4.81. The lowest it was post-treatment was 3.01, and the last three PSAs I have had over the last 6 months have been 4.3, 4.1 and 4.2.
I have updated my story with Terry so the details will be there soon.
First, we all must know that there is no "silver bullet" for PCa-- at least not yet. In my opinion, proton therapy comes closest thus far. Nevertheless, there must be failures, although as yet I have not seen one reported. And as yet I would not classify your situation as a "proton failure" as I say below.
Also, in my opinion, much depends on the disease and the individual. What is the person's overall health? Are there other diseases or physical problems?His age and medical history? What was the stage of the cancer? What was the Gleason Score and initial PSA? and many more.
As to the PSA of the individual after treatment, Bob Marckini has commented I believe that there are wide variations in final PSA in his membership of the BoB (Brotherhood of the Balloon) of which I think there are now close to 5000 members. Some never reach a nadir of less than 1, which is what most of us assume means we are "cured."
Again in my opinion, if the PSA is not rising, and therefore the dreaded "doubling time calculation" has not come into play, this may be your (unusual and higher than normal) route to "nadir." So then get on with your life and quit worrying about it!!! Just continue your periodic PSA tests as we all are doing. And I would go to at least three months between blood work for the PSA.
Also I assume that you know to avoid sex, heavy lifting, bike riding, etc. (anything that might "exercise" the prostate gland) for about a week before the blood draw. And make the doc wait until after the blood draw if he is going to do another DRE.
I would certainly contact the radiation oncologist at the proton center (if you have not) where you received treatment and ask for their guidance.
Also, if you are a member of the BoB, I would query Bob Marckini for his opinion about this. If not a member, join the BoB now. There are many many benefits including access to thousands of histories.
Fuller
BoB LLUMC March 2007 current PSA <0.1 ng/mL
Some background: I'm 48 and physically I'm probably in the best shape I've been in years. I've never had any of the traditional symptoms of PCa and still don't. I had a random PSA test two years ago which led to my diagnosis. Without that test I would probably still be blissfully ignorant that I have PCa. My highest PSA was 4.81. Initial staging was T1c.
I'm a member of BoB and posed this same question to Bob Marckini a few weeks ago. He didn't really have know of anyone in a similiar situation.
I'm currently in contact with LLUMC. My doctor is out until next week but I've been told he will be advised when he returns. The nurse I spoke to suggested I may need another biopsy (12 - 20 cores this time), and possibly a bone scan to determine what's going on.
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
