RE: Re: FW: New Prostate Cancer Videos

[Guest guest]

My comments ******

________________________________

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Fuller

Sent: Friday, December 12, 2008 10:31 PM

To: ProstateCancerSupport

Subject: Re: FW: New Prostate Cancer Videos

His proton video leaves one with the impression that there is almost no data

supporting the use of proton beam, and further that there is no evidence

that the side effects of proton therapy are minimal when compared to other

treatment modalities.

*****Unfortunately at this time most of the proton evidence is theoretical

rather than clinical. The only study I have seen recently has been the head

to head study of IMRT to protons that concluded that survival with the two

modalities are similar. They said there may be QOL differences but did not

look at that. I wish that both groups had published more outcome papers but

unfortunately they are lacking. That is what I think Dr Chodak is talking

about. We need to differentiate between the types of research because

unfortunately we have found that what we thought based on theoretical models

or even through animal models has not been proven true when tested in

humans. Another factor in research is that findings have to be validated

because unfortunately it may not prove to be true when tested with different

researchers. There were a couple of studies recently where when there was an

attempt to validate they could not be repeated by different researchers so

this part of the process is important.

As you know from my earlier postings, Loma University Medical Center

has been using protons since the early 1990s, and Massachusetts General

Hospital for about ten years. The other centers are now well on their way

to establishing their own records. The Japanese proton centers have

contributed to the available records, as has the Scherrer Institute in

Switzerland.

To say that good longer-term data is limited is therefore inaccurate, as I

stated. It is out there!

****Unfortunately clinical data from these groups has not been published or

else I am sure you would have sent it to us as part of these discussions.

There is a great deal of anecdotal information but not research information.

As Dr Chodak said we need information that compares patients with similar

statistics and we can't just get them all lumped together. If the bulk of

the patients are Gleason 6 then the outcomes can expected to be better than

Gleason 8 patients. I am not the expert that you are so if this information

is available please send the links.

There are many references to learn about proton therapy. All it takes is

time, patience, and perseverance.

Dr. Chodak says the data is " limited. " I say it is not, and as a doctor, he

has for better access to these records. He says PSA is not an accurate

indication of long-term survivability. I say reaching a PSA nadir and

maintaining it is as good an indication as we have right now for being

cancer free after therapy (any treatment modality for prostate cancer).

****Clinically you are correct but the PSA has been rejected as a surrogate

for survival for research purposes. When looked at in a scientific study the

correlation is not strong enough. I wish it could be used because then it

would be easier and faster to get drugs approved by the FDA. PSA rise, etc

is the best we have right now but far from perfect.

The other factor that is seemingly overlooked in all discussions of pros and

cons of proton therapy is the immensely important work done in treating

other forms of cancer, especially pediatric cancers.

****Dr Chodak's videos are for people learning about prostate cancer so

other cancers are not relevant in his videos. The issues are different for

the other cancers from what I have read. They do not have other options.

Dr. Chodak is doing a worthwhile service with his videos, but the proton

video does not represent the present state of the art in proton therapy.

Since Dr. Chodak is in Chicago, I have suggested to him that he contact one

of the lead radiation oncologists at Northern Illinois University, where a

new proton center is now under construction, to get a physician-to-physician

viewpoint on the latest in proton beam therapy knowledge.

***I contacted Dr. Chodak about some issues related to his videos and he

redid them. He is a scientist and you need to communicate to him with

scientific data that is up to accepted scientific standards. As the

point/counterpoint that I recently recently posted a link to said there are

discussion points on both sides. It is unfortunate that the proton

facilities did not begin clinical trials earlier in the process. Then we

would not be having this discussion right now.

I do not think that Dr Chodak is trying to put down on proton therapy. Have

you considered sending a link to the videos to some of the proton clinicians

for their comments/suggestions?

Kathy