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Old 03-10-2011, 05:31 PM   #1
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The Never Ending Nightmare:

I have posted a couple of threads discribing my problem with RADIATION ULCERATION. My doctor at the clinic in Florida told me he had to treat an agressive tumor very agressively. I needed to be patient and in time it would heal. That was about 2 months ago, after my second MRI which showed that in the 2 month period since the 1st MRI the ulceration had gotten worse. I was told to be patient.

The ulceration has tunneled through the tissue between the colon wall, the prostate and the uthera. And NOW I have a fistula, through to my uthera. I am now passing urine into my colon.

I am scheduled for a diverting colostomy in two weeks. This was recommended to me by my GI who warned of this possibility. But no, I listened to my radiation oncologist. What a mistake!!!

A word of caution to anyone with a Gleason of 8 or greater who is planning on radiation, discuss with your radiation oncologist how much radiation is planned for - and get a second opinion.

I know the radiation oncologist who I consulted with in Boston was surprised by the levels of radiation I received. I did get one desired outcome - at the moment the cancer is gone. But at what cost? The past seven months have been a living hell!!! And I am not looking forward to the next several months either.

I think the same outcome might have been achieved without the side effects that I am going through and I am investigating just that! I am very unhappy and I am going to let it be known.

 
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Old 03-10-2011, 10:49 PM   #2
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Re: The Never Ending Nightmare:

What a nightmare! How much radiation did they give you? Was it delivered with IGRT?

 
Old 03-11-2011, 03:14 PM   #3
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Re: The Never Ending Nightmare:

Your situation points out the importance of researching the clinics and people who are going to work on you. There can be very large differences in outcomes and side effects from one facility to another. These are the reasons why I chose Proton Therapy and I was told no sharp instruments after treatment.

Radiation may well have been the best choice for you but the clinic quite likely may have been the problem. It is very tough to make the right choices after being diagnosed with prostate cancer and I found that doctors are sometimes not all that helpful or knowledgeable. Hopefully you can get the infection cleared up and then get things put back to right. Thanks for posting because this something we need to be aware of.

 
Old 03-11-2011, 03:53 PM   #4
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Re: The Never Ending Nightmare:

bwhitney I see from another post that you had brachytherapy plus radiation. I had a consultation with Dr. Frank Critz a brachytherapy pioneer and one of the things he stresses at his clinic is that every doctor that practices brachytherapy in his clinic does 100 supervised implants and follows the patients through their conformal beam radiation before they are certified to do the procedure by themselves. He also said that some doctors go to weekend seminars and are trying it out on patients immediately afterwards. Lack of proper training may be part of the reason for your suffering.

 
Old 03-11-2011, 04:42 PM   #5
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Re: The Never Ending Nightmare:

Quote:
Originally Posted by harpman View Post
bwhitney I see from another post that you had brachytherapy plus radiation. I had a consultation with Dr. Frank Critz a brachytherapy pioneer and one of the things he stresses at his clinic is that every doctor that practices brachytherapy in his clinic does 100 supervised implants and follows the patients through their conformal beam radiation before they are certified to do the procedure by themselves. He also said that some doctors go to weekend seminars and are trying it out on patients immediately afterwards. Lack of proper training may be part of the reason for your suffering.
That's neither here nor there at this point. Actually Dr. Dattoli is one of the preeminent in his field.

 
Old 03-16-2011, 03:26 PM   #6
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Re: The Never Ending Nightmare:

Hi Harpman,

I'm replying to your earlier post after reading bwhitney's reply to you. With your interest in radiation, you may want to learn more about Dr. Dattoli's results and his approach. Unlike Dr. Critz, Dr. Dattoli has continued to publish updates of his series of patients, and he now has published impressive long-term results. I'm personally disappointed that Dr. Critz and his Radiation Clinics of Georgia team have not done that, choosing instead to cease publication of fresh, updated results years ago. Do you have any insight why that is?

Another leading center is the well-known brachytherapy group in Seattle. Both the Dattoli (brachy, brachy/IMRT) and the Seattle group have published impressive long-term results that are substantially superior to the much shorter term cancer-control results published by any proton center. I'm still trying to figure out why the proton centers, especially Loma Linda, have not published their long-term results in peer-reviewed major journals. That lack of publication, especially in view of an earlier record of publication that halted, should set off a loud alarm to new patients considering proton beam therapy. There may be a good explanation, but if so, I have yet to learn of it. I hope to see the day soon when proton therapy can document improved long-term success and back up their claims. Do you have any insight into this? I am aware that many proton patients do seem to have cured their cancers and are doing well, often with few side effects.

Take care,

Jim

 
Old 03-16-2011, 09:04 PM   #7
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Re: The Never Ending Nightmare:

IADT3since2000
Jim I did my own research and made my own decisions on further treatment after my urologist told me not to seek further treatment on account of the side effects from radiation and including brachy that he had witnessed. Instead he stressed quality of life issues and he did offer me hormone therapy which did not offer me the quality of life I wished to retain. This Thread was started by bwhitney who has suffered the side effects I wished to avoid and I believe he was treated by one of the doctors referred to above. Loma Linda has treated over 15,000 with protons for over twenty years now and I believe that the vast majority were prostate cancers patients and the majority of the prostate patients were probably treated in the last seven or eight years as they were on able to treat a relative handful during the first few years. Just about every patient and former patient I met while at Loma Linda was there by word of mouth. They knew somebody who knew someone else etc. So my experience is as a satisfied patient. (more to follow)...

Bob

 
Old 03-16-2011, 09:37 PM   #8
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Re: The Never Ending Nightmare:

IADT3since2000 (cont)
Jim you seem very well versed and have a lot more research at your fingertips than I. Please Google "johns hopkins health alerts proton beam for prostate cancer". This alert was posted Nov5, 2009 and talks about Proton Therapy and basically explains proton therapy, goes on to say: "While most experts concede PBT is superior to older forms of radiation and is at least as effective as IMRT, only 1% of prostate cancer patients receive it. The reason? The proton accelerator that provides the radiation is the size of a football field and costs $100-200 million to build". They then mention that five proton center were currently in operation and four being built and one being planned. Since then the number of operating proton centers has at least doubled and several more are under construction. The Mayo Center has two planned and many other groups are voting with their wallets on the superiority and success of Proton Beam Therapy. Check out the BOB Monthly Newsletter to Members July 2010 - “PROTON HAS NEVER BEEN PROVEN TO BE BETTER …” and Nov 2010 - IS IMRT AS GOOD AS PROTON? Read all the Newsletters as there is a lot of good information although there is a "small" Proton bias.
Bob

 
Old 03-17-2011, 07:54 PM   #9
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Re: The Never Ending Nightmare:

Hi Bob,

I'm responding to your last two replies in favor of proton beam therapy. Your enthusiasm caused me to check again to see if the proton folks had posted any recent clinical results that I might have missed.

I did this search in www.pubmed.gov, a site we can use on this board because it is Government sponsored (without the quotation marks in the actual search): " proton beam AND prostate cancer ", with these limits applied: Limits Activated: only items with abstracts, Humans, Male, Clinical Trial.

This search yielded just thirteen hits, but should have picked up the key results. A number of the result dealt with the technology and some side effects but did not focus on effectiveness and side effects. A few results did, but none were recent, and results were around 80% success for a modest number of years of follow-up.

That leaves me with the results of the prestigious Prostate Cancer Results Study Group, available in a publication provided by the Prostate Cancer Treatment Center. Their summary of studies for success of all therapies shows proton beam results for low-risk cases around the 80% success mark at around the four to five year points in follow-up, and similar results for intermediate risk patients (and no studies for high risk).

Those results are not bad for low-risk patients, but they are far from stellar, considering what is being achieved with other therapies, especially brachytherapy, with some surgery studies also looking decent. The proton results for intermediate-risk patients look good compared to most solely external beam/non-proton studies, but that is not really the competition; rather it is the benchmark that proton publicity often uses. The real competition for intermediate risk patients, according to comparative graphs, is brachytherapy or a combination of external beam/non-proton and brachytherapy; with few exceptions, the results for the brachy and combination approaches clearly outshine the published proton results - it's not close, at least at centers of excellence versus the proton centers of excellence, and the follow-up for most of them is double or triple the follow-up for the proton studies.

Can you see why some of us are skeptical? I have looked at opinion pieces and promotional literature for proton beam in the past, such as those you described, but we need to think whether that informal literature trumps solid published research. I would be delighted to see a solid, long-term proton study that showed it was competitive with the brachy, combo, and surgery (for low-risk only) approaches. That's what I'm still looking for. It is possible that my search in PubMed failed to pick up a relevant study. If you know of such an actual study, please let me know. If you want to convince us that proton is competitive with external beam alone, and superior in most instances, I already am a believer.

As for side effects, apart from control or cure of the cancer, I do think that proton beam does a good job. There's some recent encouraging research about that.

I do believe there is a benefit to positive thinking, and all of the proton veterans I have met have been enthusiastic. That is a positive indicator and does count for something. I admire that enthusiasm.

Take care,

Jim

 
Old 03-18-2011, 12:06 AM   #10
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Re: The Never Ending Nightmare:

IADT3since2000
There is no doubt that Proton Therapy was a new and experimental approach as Loma Linda was the only Proton Center treating prostate cancer from 1990 to 2002 and it was operating under strict licensing restrictions. In the beginning they were only treating one patient per day. As the years went by they were able to increase dosages and through more research and innovation increase the capacity to 160 patients per day while I was there ending Jan 2010. I believe that they may be able to treat in excess of 300 patients per day now. Many of the older proton studies you refer to were done when the patient pool was small and the licensed radiation dosages were much smaller than those used today. The huge capital expense of building proton treatment facilities is one reason that many experts consider it more worthwhile to use older cheaper radiation therapies. The only side effect I suffered was minor rectal irritation which is completely healed now and things are back to normal. But that comes with any radiation of the prostate area and mine was delivered to a larger area than normal because my case was salvage. When you consider the overall lack of side effects such as fatigue, illness, impotence, incontinence, and coupled with as good or perhaps better cure statistics proton is worth considering. There's got to be a reason why the number of proton centers is taking off.
Bob

 
Old 03-18-2011, 12:29 AM   #11
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Re: The Never Ending Nightmare:

IADT3since2000
I think that the number of operating proton centers in the US is now 9 and 20 more are in the construction or planning stage.
Bob

 
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