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Old 04-18-2009, 09:20 PM   #1
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Question Difficulty locating proton radiation statistics

I'm 53 and recently diagnosed with PC. My wife and have been exploring treatment options and have decided, that for my situation: Gleason 3+3=6, PSA 1.4, two biopsy cores positive, as well as my personal preferences after research, we will rule out radiation seeds and focal cryosurgery. We still are considering radical prostatectomy and proton radiation therapy (the closest proton facility to me is Bloomington, IN).

As we move toward a treatment decision, we find the proton treatment option desirable based on the expectation of lower rates of post treatment side effects which are largly based upon the logical argument that the Bragg Peak nature of the proton radiation beam would minimize adverse effects beyond the prostate. However, when we search for statistics, we have not been able to locate statistics specific to proton beam treatment. The results we find are for External Beam Radiation Therapy (proton & photon combined). We are concerned by this. If the results for proton treatment show fewer rates of long term side effects than other prostate cancer treatment options, why are the statistics not more readily available? I believe proton radiation has been used to treat PC at Loma Linda since the early 90s, so one would believe that data is available.

I noticed a few of you have opted for proton radiation treatment. Can anyone point us to statistics regarding long term cure rates, reoccurrence rates and/or side effects specific to proton radiation beam treatment?

Last edited by stever5731; 04-18-2009 at 10:57 PM. Reason: spelling

 
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Old 04-19-2009, 12:37 PM   #2
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Re: Difficulty locating proton radiation statistics

Quote:
Originally Posted by stever5731 View Post
I'm 53 and .. Gleason 3+3=6, PSA 1.4, two biopsy cores positive... considering radical prostatectomy and proton radiation therapy (the closest proton facility to me is Bloomington, IN).

As we move toward a treatment decision, we find the proton treatment option desirable based on the expectation of lower rates of post treatment side effects which are largly based upon the logical argument that the Bragg Peak nature of the proton radiation beam would minimize adverse effects beyond the prostate. However, when we search for statistics, we have not been able to locate statistics specific to proton beam treatment.
....
I noticed a few of you have opted for proton radiation treatment. Can anyone point us to statistics regarding long term cure rates, reoccurrence rates and/or side effects specific to proton radiation beam treatment?
I was one of those that had proton treatment (in Jacksonville). Started out somewhat biased against radiation in general and I was going to have robotic surgery. Ultimately it was the Marckini book, a lot of emails and phone calls to past and present patients, and the strong urging of someone then undergoing proton treatment in Jacksonville who kept urging me to go there for a consultation (I had a consultation already scheduled for Loma Linda, and even with the distance from the east coast, I more or less figured that's where I would likely go).

It was the trip to Jacksonville that convinced me that not only was proton right for me, so was Jacksonville (even though it had only been open a little more than one year- this was mid-2007). I don't know anything about the center in Indiana-- just know that of the five, Loma Linda and Jacksonville seem to be the ones most want to use for their prostate cancer. The Texas center doesn't seem to want high risk cases, Mass General uses its proton equipment primarily on non-prostate work, and I'm unsure about Indiana.

Long-term statistics-- seems to be an issue to some extent with all of us looking at proton. As of late, the doses have been escalating (without compromising safety) and that's a good thing-- the higher the dose without significant side effects, the better the outcome for all radiation treatments.
They've also improved the process in other areas too (for proton). So the earlier data will be less useful. There were some papers I read but they wouldn't be particularly current now. You might ask the doctors when you contact them for a consultation. In general, I believe that all external beam radiation is pretty much equivalent as far as cure results, with maybe an edge for proton because it's able to be targeted so well. There are no added side effects that result from proton-- it's generally believed that the side effects are less than with other forms of radiation-- some urinary burning and frequency during treatment (usually these symptoms respond well to Flomax) and possibly some minor rectal bleeding one to two years after the treatment.

Obviously surgery is something to consider to see if that's right for you. The possibility of severe long-term side effects, although the odds are quite low, was one of the factors in my eliminating this alternative. Obviously there's a time commitment for proton treatment, especially if not near your home-- but you can pretty much carry out a normal life except for the brief treatment time each day. No fatigue for example.

I never really considered Active Surveillance because I was a Gleason 7, but with your profile of Gleason 6 and low PSA, have you looked into this? There are some new technologies for mapping the cancer within the prostate, so if you were well contained, maybe you could just watch to see what progression, if any, there is. Given more time, current treatment methods can't help but get better and more data would be available.

 
Old 04-19-2009, 02:18 PM   #3
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Re: Difficulty locating proton radiation statistics

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Originally Posted by yanick123 View Post
A study at University of Florida from Jasksonville just want out in American journal of clinical oncology.

Look like they use imagery to pinpoint every tumors larger then 2.5 mm square in the proton therapy in 3D. They triangulate beams so only the tumor cells get fry.
...
It is my understanding that the entire prostate receives treatment with the beams; this is something I will be discussing with the proton doctor to clarify when I have my next followup exam in May. Or if one of the current proton patients reads this and checks with the doctors there, we might get input more quickly on this subject.

 
Old 04-20-2009, 07:45 AM   #4
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Re: Difficulty locating proton radiation statistics

I think it would be valuable to clarify the issue of whether the entire prostate is radiated with Proton Beam or only visible tumor tissue as with other forms of radiation treatment including seeds. If the entire prostate is radiated, this would certainly be a significant difference in Proton Beam treatment from all others and a reason to differentiate the survival and recurrance statistics.

 
Old 04-20-2009, 09:59 AM   #5
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Re: Difficulty locating proton radiation statistics

Quote:
Originally Posted by shs50 View Post
I think it would be valuable to clarify the issue of whether the entire prostate is radiated with Proton Beam or only visible tumor tissue...
PBT was not my choice of treatment but having researched all methods I can offer this response. Others who chose PBT will also likely chime-in.

The 3-dimensional known volume of tumor within the prostate is certainly targetted in PBT using techniques mentioned below, but there is a 'margin' around that volume also considered in-scope, generally about 1/2". PBT is certainly more 'precise' than photons, but it's not laser-precise; thus the resultant 'margin'. This 'margin' is the primary purpose of the "balloon" that is inserted/inflated between the prostate and the anterior (inside) wall of the rectum...to help keep the rectum out of the "line of fire" and thereby minimizing collateral damage.

This is how I understood my research...

 
Old 04-20-2009, 10:56 AM   #6
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Re: Difficulty locating proton radiation statistics

Quote:
Originally Posted by shs50 View Post
I think it would be valuable to clarify the issue of whether the entire prostate is radiated with Proton Beam or only visible tumor tissue as with other forms of radiation treatment including seeds.
...
The entire prostate is treated.

Just to make sure I was not reporting improperly when I responded earlier, I checked with Bob Marckini, author of "You Can Beat Prostate Cancer". He's the one most familiar with this and has grown his membership group of past and present proton patients to over 3,500. (That's quite a pool of people to be able to contact to learn about specific experiences-- when one joins his group and gains access to the members, the information can be sorted by one's geographic location, age when treated, Gleason score, or PSA, among others.)

Basically, the answer I received was that all proton centers do some things a little differently, but every one of them targets the entire prostate, the capsule, the proximal (local) seminal vessicles, and an extra margin around that whole "package."

I know the margin treated at the edge of the prostate can vary, depending on one's particular situation. In my case, the cancer was close to one edge, so on that side, the treatment pattern was a little wider than with the other side.

 
Old 04-20-2009, 11:03 AM   #7
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Re: Difficulty locating proton radiation statistics

Quote:
Originally Posted by kcon View Post
...
This 'margin' is the primary purpose of the "balloon" that is inserted/inflated between the prostate and the anterior (inside) wall of the rectum...to help keep the rectum out of the "line of fire" and thereby minimizing collateral damage.
...
That's basically the idea- but not all centers use the balloon. It's used infrequently at Jacksonville, for example. Instead, the desired effect is accomplished by one's receiving a measured amount of saline solution directly into the rectum prior to each treatment. It sounds much worse than it is; it doesn't give one the feeling that an enema would. At the conclusion of the treatment, a trip to the bathroom is in order (and they are strategically located near the treatment room), but there were times that I changed into my street clothes before making that visit-- the urgency wasn't that great. In order to move the bladder away from the radiation area, one drinks a prescribed amount of water, usually 8 ounces, about 30 minutes prior to the treatment itself.

 
Old 04-20-2009, 12:08 PM   #8
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Re: Difficulty locating proton radiation statistics

Quote:
Originally Posted by stever5731 View Post
I'm 53 and recently diagnosed with PC. My wife and have been exploring treatment options and have decided, that for my situation: Gleason 3+3=6, PSA 1.4, two biopsy cores positive, as well as my personal preferences after research, we will rule out radiation seeds and focal cryosurgery. We still are considering radical prostatectomy and proton radiation therapy (the closest proton facility to me is Bloomington, IN).

As we move toward a treatment decision, we find the proton treatment option desirable based on the expectation of lower rates of post treatment side effects which are largly based upon the logical argument that the Bragg Peak nature of the proton radiation beam would minimize adverse effects beyond the prostate. However, when we search for statistics, we have not been able to locate statistics specific to proton beam treatment. The results we find are for External Beam Radiation Therapy (proton & photon combined). We are concerned by this. If the results for proton treatment show fewer rates of long term side effects than other prostate cancer treatment options, why are the statistics not more readily available? I believe proton radiation has been used to treat PC at Loma Linda since the early 90s, so one would believe that data is available.

I noticed a few of you have opted for proton radiation treatment. Can anyone point us to statistics regarding long term cure rates, reoccurrence rates and/or side effects specific to proton radiation beam treatment?

 
Old 04-20-2009, 12:40 PM   #9
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Re: Difficulty locating proton radiation statistics

Quote:
Originally Posted by stever5731 View Post
I'm 53 and recently diagnosed with PC. My wife and have been exploring treatment options and have decided, that for my situation: Gleason 3+3=6, PSA 1.4, two biopsy cores positive, as well as my personal preferences after research, we will rule out radiation seeds and focal cryosurgery. We still are considering radical prostatectomy and proton radiation therapy (the closest proton facility to me is Bloomington, IN).

As we move toward a treatment decision, we find the proton treatment option desirable based on the expectation of lower rates of post treatment side effects which are largly based upon the logical argument that the Bragg Peak nature of the proton radiation beam would minimize adverse effects beyond the prostate. However, when we search for statistics, we have not been able to locate statistics specific to proton beam treatment. The results we find are for External Beam Radiation Therapy (proton & photon combined). We are concerned by this. If the results for proton treatment show fewer rates of long term side effects than other prostate cancer treatment options, why are the statistics not more readily available? I believe proton radiation has been used to treat PC at Loma Linda since the early 90s, so one would believe that data is available.

I noticed a few of you have opted for proton radiation treatment. Can anyone point us to statistics regarding long term cure rates, reoccurrence rates and/or side effects specific to proton radiation beam treatment?
I am presently at UFPTI and completed 26 of 39 treatments today. I too looked for data on survival rates. One I found was one done by Dr. Jerry Slater of Loma Linda. The study is Clinical Applications of Proton Radiation Treatment at Loma Linda University:Review of a Fifteen Year Experience. It was published in Technology in Cancer Research and Treatment ISSN 1533-0346 Volume 5, Number 2, Ap;ril 2006 . If you can't find this contact Loma Linda and I am sure they can send you a copy. Some of the doctors at UFPTI, notably Dr. William Mendenhall have published some studies on prostate treatment and I am sure they will provide you those. Loma Linda also has some other studies published too which you should be able to access. There are also some studies done by Sloan Kettering.

My conclusiion was that survival rates were nearly the same with surgery, seeds, IMRT radiation, and Proton Beam . As Daff pointed out some of the data is hard to compare because of improvements in both photon radiation and proton beam radiation. Imaging is better, doses are higher, and other improvements in all forms of treatment have occurred over the past 15, 10 and even 5 years so you probably can't ever get a "true" apples to apples comparison but common sense tells you all treatments are better than they were 5 years ago. There are big differences in side effects though which you can get data on. There is a study done by the Abramson Cancer Center of the University of Pennsylvania by Dr. James Metz on June 29, 2006 which addresses the side effect. Plus, just talk to men who have had various forms of treatment and I found by doing that there was just no comparison in my mind. Many of the men who had surgery had more severe side effects in incontinence issues and ED. And I did random samples of all treatment categories. There are a number of resources you can access which enable you to read their stories and also call and e mail them for more details.

In summary, my decision to come to Jacksonville boiled down to I believed the cure rates were comparable to other forms of treatment and the side effects were much less. I was 62 and wanted to cure it number 1, and number 2 not be incontinent and have to wear a diaper and pads, and 3 to have an active sex life. I researched for months and talked to hundreds of men. So far, I am more than pleased with my treatment with proton therapy. I have had very minimal side effects and have been very impressed with the University of Florida doctors and professionals at UFPTI.

Good luck in your continued research and decision process.

Panthers Fan

 
Old 04-21-2009, 11:37 AM   #10
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Re: Difficulty locating proton radiation statistics

Quote:
Originally Posted by stever5731 View Post
I'm 53 and recently diagnosed with PC. ... my situation: Gleason 3+3=6, PSA 1.4, two biopsy cores positive ....

However, when we search for statistics, we have not been able to locate statistics specific to proton beam treatment. The results we find are for External Beam Radiation Therapy (proton & photon combined). We are concerned by this. If the results for proton treatment show fewer rates of long term side effects than other prostate cancer treatment options, why are the statistics not more readily available? I believe proton radiation has been used to treat PC at Loma Linda since the early 90s, so one would believe that data is available.

I noticed a few of you have opted for proton radiation treatment. Can anyone point us to statistics regarding long term cure rates, reoccurrence rates and/or side effects specific to proton radiation beam treatment?
Welcome to this board that none of us wanted to be involved with. But it's a good board.

I have not had proton beam, but I can provide added detail to support some of the other posts.

You can find abstracts of the papers cited by panthersfan7 and yanick123 by going to our free (courtesy of us taxpayers) National Library of Medicine (and gift to the world) PublicMedicine web site www.pubmed.gov and using an appropriate search string. We are not allowed to use most websites on this board, but PubMed is allowed because it is Government sponsored. PubMed is a mighty sword, and when we are diagnosed, it's time to imitate King Arthur by pulling that sword from the rock and swinging it for effect against the cancer. Prostate cancer in a profound sense is an information disease: those who find and use key information are highly likely to do much better than if they were unaware of that information. While PubMed is free, including any abstracts (click on the hypertext authors' lists) and occasional links to free papers, PubMed also gives you a link to for-profit sources of papers in the upper right corner. Of course, many local medical libraries will make free copies for us patients, and, as panthersfan7 said, Loma Linda might provide a free copy.

Using PubMed is pretty natural, but here are a few examples from this thread. (You don't use the quotation marks at the beginning and end; I have used them here to set off the string from other words:

" Clinical Applications of Proton Radiation Treatment at Loma Linda University:Review of a Fifteen Year Experience AND 2006 [dp] "

Here are the "Related Articles" links that PubMed provides for this paper:
Related articles
---Development and operation of the Loma Linda University Medical Center proton facility.
Technol Cancer Res Treat. 2007 Aug; 6(4 Suppl):67-72.

[Technol Cancer Res Treat. 2007]

Proton radiation therapy for pediatric malignancies: status report.
Strahlenther Onkol. 1999 Jun; 175 Suppl 2:89-91.

[Strahlenther Onkol. 1999]

--- Clinical proton radiation therapy research at the Francis H. Burr Proton Therapy Center.
Technol Cancer Res Treat. 2007 Aug; 6(4 Suppl):61-6.

[Technol Cancer Res Treat. 2007]

--- ReviewThe potential role of proton beams in radiation oncology.
Semin Oncol. 1997 Dec; 24(6):686-95.

[Semin Oncol. 1997]

--- Review[Heavy charged particle radiotherapy--proton beam]
Gan To Kagaku Ryoho. 2003 Dec; 30(13):2030-5.

[Gan To Kagaku Ryoho. 2003]

The only paper I found by Dr. Mendenhall for proton therapy did not involve prostate cancer. I used this search string " mendenhall w [au] AND proton ".

I searched for papers by Dr. James Metz but found none, using this string, which should have picked up the 2006 paper: " metz j [au] AND proton AND 2006 [dp] ". I suspect his work was published in a local or institutional publication or as a poster abstract, neither of which would have been picked up in PubMed.

You can get directly to the abstract mentioned by yanick123 with this search string: " proton AND 2009 [dp] AND prostate cancer AND vargas c [au] ". I noticed that their research demonstrates success in achieving an error margin of 2.5 mm or less using an Image Guided Radiation Therapy (IGRT) . That caught my attention because Dr. Michael Dattoli, one of the world's experts in seeds and in external beam radiation (IMRT for him), has reported highly similar success with his process, which also uses IGRT. I just looked at a copy of one of his vugraphs from his second talk at the International Conference on Prostate Cancer 2006; is says that he achieves an error margin of only .5 mm when using 4D-adaptive IG-MRT. Awesome!

Often you see the results for effectiveness and side effects right in the abstracts, but not this time.

You did not mention Active Surveillance as an option, an alternative that daff noted. Have you considered it? Based on what you have posted about your case so far, you would fit the profile except for age at all the leading centers, and one of the leading centers has had success with men of any age (U. of Toronto, Sunnybrook, Dr. Laurence Klotz, while another in the Netherlands likes to see men 55 or older in its program, close to your age. It is looks to me that well-managed Active Surveillance with deferral of therapy while using cancer countermeasures involving diet/nutrition/supplements, exercise, stress reduction, and perhaps mild drugs could be the best program for you. You are probably unaware that an impressive number of leading prostate cancer centers in the US and world, including some of the most prominent surgeons, are enthusiastic about Active Surveillance for truly low-risk patients. You are probably also unaware that successful intervention with deferred therapy is virtually as successful as immediate therapy, but the vast majority of these patients for whom monitoring shows a need to have therapy have gained several years without sacrificing their quality of life of bearing the burden of therapy. A large majority of AS patients are able to stay in the program indefinitely without requiring major therapy.

Good luck with your research,

Jim

 
Old 07-19-2010, 12:05 PM   #11
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Re: Difficulty locating proton radiation statistics

Have you look on the Loma Linda Proton Center site? Their 10 year statistics came out over 5 years ago & I have seen them... very impressive. I was treated there in July of 2005 and have recommend the proton beam to a number of newly diagnosed men.

I was having problems with the dreaded BPH prior to being diagnosed, and was able to stop taking Flomax about 3 years ago... a positive side effect.

My only noticeable side effects were pink spots on both hips that gradually faded away, and a loss of energy about 3 weeks into treatment... that resolved itself within one month of finishing treatments.

 
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