A message from the National Association for Proton Therapy

According to a media release issued yesterday by the National Association for Proton Therapy (NAPT), “Approximately 97 percent of patients who received only an advanced form of radiation called proton therapy for prostate cancer report that they have not experienced a recurrence of their disease.”

These data were apparently collected and presented at this year’s annual meeting of the NAPT by an “independent health economics and policy consulting firm” called Dobson DaVanzo & Associates, LLC. The media release does not give any information about the funding of the study or any details about how the patients included in the study were identified.

The study included input from 3,798 proton therapy patients treated at 12 proton therapy centers, which, supposedly, equates to about 17 percent of all patients treated by proton beam therapy for prostate cancer. This implies that some 22,300 men have been treated with PBRT.

We have provided links to all of the following items made available by the NAPT:

There is no doubt that these data will make some people positively ebullient. However, if the American Urological Association or the American Society for Radiation Oncology issued data like these on the effectiveness and safety of any type of treatment they endorsed, based on 17 percent of the patients treated, we can only say that The “New” Prostate Cancer InfoLink would look at such data with considerable skepticism.

9 Responses

  1. What are you saying?

    They cherry-picked the patients?

  2. Doug:

    No. I am saying that they have provided no information at all about how they identified the patients, and that there is no information about who funded the research firm. This was not a study done by an academic research center. Do you find these numbers credible?

  3. This is a misleading publication. Forget the numbers. Take the Executive Summary. Consider its “key findings” and look at the second bullet point, concerning satisfaction. (1) Patients have “recommended” proton therapy to others. Fine, but what do they know? (2) Treatment regarded as “excellent” and “good” by many patients? I can say that too, and I know why. Do they? In comparison to what? (3) Many “believed they had made the right treatment decision”? That only expresses their attitudes. What were they based on? Were some or all sold a bill of goods? Or the Brooklyn Bridge? (4) Quality of life after treatment “better than” before treatment? These are subjective judgements that might well change if and when long-term side effects turn up. So how long after treatment did the enthusiasts state these beliefs?

    Now take the third bullet point. Some reductions in health were noted in the later study, when compared to the earlier one. But these were “in large part” due to features having nothing to do with the treatment modality, simply to variations amongst the patients, e.g. age differences. Fine. Within each trial, or between earlier and later trials? And what does “in large part” mean, exactly?

    Finally, look at Exhibit 2. In each case, what grounds did the patients have for their decisions? Technical literature and/or informative conversations with specialists? Consultation with astrologers?

    My doctors considered the relative potential benefits for me of proton therapy versus a combination of high-dose-rate brachytherapy and external beam radiation therapy. They chose the latter and I later learned why. I do not know what my condition will be in 10 years, but I can give others some information now that is more detailed and better evidenced than similar items in these vague reports. This Summary is an advert for PBRT disguised as a scientific report.

  4. There is no question they need to provide more details. I have to believe that institutions like Loma Linda have more than enough data. This is why it is puzzling that those details are not provided, especially in light of the recent criticism regarding the cost versus benefit regarding proton therapy for prostate cancer.

  5. On the face of it these figures are so astonishing that I found myself looking at the date of the report — fortunately it was one day after April 1st.

    The only real meat in the information provided is in the PowerPoint presentation. It’s interesting that in last year’s survey about half of the patients were very recently treated, and this has come right down for this year. This means that they must have managed to enroll a lot more of the people treated longer ago for the more recent survey. The average Gleason changed from 6 to 7 too.

    There seem to be only two possibilities. Either they have selected only almost all of the perhaps 22,000 recipients who have had absolutely the best outcomes for this survey, and it therefore grossly and dangerously misleading, or we have somehow overlooked a spectacularly successful form of treatment. And I needn’t have had that prostatectomy.

  6. I highly doubt that the proton patients would be recommending this treatment if their cancer came back or they had severe side effects.

    I am in a number of internet prostate groups, and it is obvious the protoners are the most satisfied with their treatment. Most of the surgery and regular radiation guys seem to have problems.

    Let’s have a little common sense, here.

  7. @Doug — I used common sense above. All I claimed was that this Summary is full of imprecise statements and hence does not impress me at all. Last I heard, PBRT needs further investigation to justify its expense. It’s “obvious” to me right now that I am satisfied with my treatment, but that says very little, as my treatment is new and some factors haven’t been fully studied. I might be unpleasantly surprised soon enough.

  8. George,

    What I meant by “common sense” is that if most of the proton guys seem happy, they are not having terrible side effects or recurrences.

    This is a PR war. All the hospitals that have proton say it is great, and those that don’t want to discredit it.

    Mayo, who in my personal experience is slow and careful, before utilizing new prostate cancer treatments, is building two facilities. I trust them and the University of Chicago as much as anyone, and more than most.


  9. Doug,

    I guess opinions differ as to satisfaction and seeming happy. I am satisfied now, as I gather from lots of reading that I got a world-class treatment for localised, very high-risk prostate cancer. I will never be satisfied with the result, since I’m all too aware of the dangers. I am satisfied with the side effects: they are no fun, and I did know that some were probable. This last point is where I differ from your contacts: I am satisfied with the side effects, as I knew that something would turn up; I am not happy about them.

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