PBRT and prostate cancer: your breakfast read on Bloomberg.com

Ye of faith … and ye of rather less faith … in the merits of proton beam radiation therapy (PBRT) compared to other forms of treatment for management of localized prostate cancer may want to read through Robert Langreth’s article (“Prostate cancer therapy too good to be true explodes health cost“) posted this morning on the Bloomberg.com web site.

The article offers no new insights into the effectiveness or the safety of PBRT in the management of prostate cancer … but it does nicely encapsulate what we do and don’t really know about the value and the cost issues surrounding the use of this technology in the disease than concerns most visitors to The “New” Prostate Cancer InfoLink.

13 Responses

  1. I have a friend (retired) who went down to Jacksonville for 8 weeks (lived in his travel trailer) to have his prostate cancer treated this way. He said there was no pain, no discomfort, no weakness, and no side effects of any kind. He rode his bike every day, and said it was a great vacation. One anecdote does not make a clinical trial, but it’s on my list of things to consider. (First on my list is not getting treated at all, if possible. Looking to the Prolaris test to help with that decision.)

  2. I just have to add this. The article includes this tidbit:

    ‘”It’s not that simple,” argues Harvard’s Chandra. “Every time we spend $15,000 to treat a patient with an unproven technology, we effectively decide to spend $15,000 less on our schools, our education, or on money covering the uninsured,” he said. “That tradeoff is something we have never confronted.”‘

    Seriously, talk about your unsupported assertions. Is there some pot of money somewhere that can be used to either treat patients, pay for schools, or cover the uninsured? I think not. How about:

    “Every time we spend $15,000 to treat a patient with an unproven technology, we effectively decide to spend $15,000 less on strip clubs, lottery tickets, beer, ice cream, big screen TVs, NFL football games, jet skis, pot, and edible underwear.”

  3. Dear Doug:

    (1) Do you actually know that your retired friend needed treatment for his prostate cancer at all?

    (2) Every time I spend $15,000 on things like strip clubs, lottery tickets, etc. (which happens rarely or not at all), that money comes out of my pocket. By contrast, every time we spend $15,000 to treat a patient with an unproven technology, the one pocket that most of that money is certainly not coming out of is the pocket of the patient getting treated!

    If you want to have PBRT and pay for it yourself, please feel free to do so. I will entirely support your right to make such decisions. If you want PBRT and you want everyone else to be subsidizing the cost (through your health insurance plan or through Medicare), many of us would like to see some data showing it has significant and very real benefits! It costs a great deal more than $15,000!

  4. My insurance company paid $22,000 in 2009 for PBRT. It did not get the cancer and it did damage the area in the pelvis. It took me 2 years to recover.

  5. I think the interest and hopefulness around PBRT has less to do with its potential for cure — because several existing forms of radiation treatment are clearly pretty good at that — than for the hope of a form of treatment that doesn’t destroy men as fully-functional human beings.

    With the exception of the handful of clinicians and researchers working on focal therapies and the few, the brave, the active surveillance proponents, most of the rest of the gang have simply given up (and even embraced and championed their glorious side effects) on trying to minimize collateral damage to men’s capacity for sexual function and continence. Some have even recast impotence and incontinence as a “badge of honor” or “entrance into the brotherhood”. Oh, yeah, and those techniques are incredibly profitable … coincidentally … ;)

    As long as mainstream urology has decided that, at best it doesn’t care, and at worst, likes to leave men permanently maimed, and their quality of life irretrievably diminished, those who value themselves and love their partners will look for alternatives, and even high priced ones will seem desirable.

    Study after study after study show that approximately half of men subjected to conventional radiation therapies are impotent 5 years post treatment. So if a man subjects himself to IMRT or brachytherapy at 46 and is fully sexually functional, and the treatment works … All other things working out pretty well, he’ll have about 30 years in which to never make love to his partner again.

    Somehow, we have to a find a way to make urology not want to destroy men.

  6. Dear Doug,

    Wouldn’t you want to know the truth about the results for proton beam therapy before choosing it. How about the fact that no study has shown either comparable survival at 10 or 15 years and no study has shown fewer side effects. It has been all hype so far. The results that have been published only look at PSA control, which is an unreliable way to assess radiation. I can’t believe so many men have chosen something without knowing if it really does what the marketing claims. As a concerned M.D. I think that this is more about how to make more money and less how to do a better job of taking care of men with this disease.

  7. Ralph,

    I’m sorry to hear about your adverse experience with PBRT, but I must note that, in my research and experience, it is atypical. I underwent PBRT successfully for low-risk prostate cancer at M. D. Anderson in Houston. Similar to Doug’s friend in Jacksonville, I felt no pain, no discomfort, no weakness, and no side effects of any kind (urinary or sexual). In fact, in some respects I frankly feel better than I did going in. Furthermore, during my treatment time in Houston (8 weeks), I continued to work full-time at my job, though remotely. I have zero doubt that PBRT was safe and effective for me, and if I had it to do over again, I would make the exact same decision.

    For the benefit of the esteemed Sitemaster, I will concede that my experience, almost by definition, is anecdotal in nature. But let me ask this common-sense question: How many enthusiastic “cheerleaders” have you come across in support of radical prostatectomy(open or robotic) or any of the other possible treatment modalities for prostate cancer? Further, don’t you find the raw number of such “cheerleaders” remarkable in light of the fact that only about 1-2% of men with prostate cancer have their disease treated with PBRT? In other words, a very high percentage of PBRT patients feel compelled to speak up following treatment about their positive experience. Once again, compare that — even anecdotally — to RP and the others. I have yet to come across even one RP enthusiast. Lastly, Bob Marckini (of BoB) compiled a comprehensive survey finding ~95% success and upwards of 98-99% satsifaction with PBRT. Admittedly, Bob is a huge advocate of PBRT, but as a retired person he does it completely from the heart. He is absolutely scrupulous about disclosing the truth of PBRT and does not screen out negative responses/experiences. I have no doubt that one day PBRT will be vindicated in the treatment of prostate cancer. (BTW, it’s already been vindicated in the safe and effective treatment of many, many other cancers — just check the medical literature.)

    Peace and health to all.

  8. Dear Robb:

    Almost exactly 15 years ago now, I first asked Loma Linda whether they were carefully compiling data on their patients and whether they would be publishing detailed reports on outcomes and side effects. I was absolutely assured that they were and that they would. I am still waiting.

    No one is suggesting that PBRT doesn’t work. But I have no evidence that it works any better than modern forms of IMRT and the only independent anyalysis ever carried out (just a few months ago) showed that it didn’t.

    Yes, I can give you a whole litany of men who are happy with their Cyberknife treatments, their surgeries (robot-assisted and otherwise), their IMRTs, their brachytherapies, their cryosurgeries, and their active surveillance. “Satisfaction” scores after treatment for prostate cancer are invariably high, regardless of the treatments … It has always amazed me how high.

    What has not amazed me about PBRT is the number of men who, in the past 2-3 years, have started to express high levels of dis-satisfaction with their treatment. This is a relatively recent phenomenon as the numbers of PBRT patients started to climb.

    I am only saying the same thing about PBRT as I have said about every form of treatment for prostate cancer for 20 years. Please show me data. Don’t just tell me how wonderful it is. My actual experience from talking to thousands of patients over the years is that every current form of treatment comes with significant risk for side efffects that can be very serious in some patients (as demonstrated by Ralph).

  9. Sitemaster, I do respect your long service to this site and, accordingly, the longitudinal knowledge you’ve acquired over the years. I would just add the following two items to what I wrote previously:

    1. There is no doubt that the precision of PBRT leaves a lower integral dose of radiation in the patient’s body as compared with IMRT and 3D-RT. This has been documented and graphically shown, most recently (to my knowledge) in June 2011. Further, there is no doubt that PBRT is the accepted standard of care for cancerous tumors to the head, neck and spine, precisely because it is so targeted and spares surrounding tissues/structures in the body. Why is it such a stretch to deduce that if PBRT is the standard of care in those more precarious cancers, then it would be equally valuable to treat the prostate, which is itself surrounded by critical structures? I don’t get why you suspend basic logic in the case of prostate cancer.

    2. As a percentage of all patients treated with a given modality, I submit to you that PBRT has, far and away, the highest patient satisfaction rating. Are you really here to tell me that you believe there’s truly no material difference among patient responses post-treatment regardless of treatment undertaken? I’ll wager you a year’s worth of steak dinners that if you select 100 PBRT patients and 100 RP patients completely at random and ask them to rate their satisfaction with treatment efficacy and side effects (urinary and sexual), PBRT will prevail going away in a statistically significant manner. I’ll sweeten the pot even further. Conduct the aforementioned exercise five separate times with five separate survey groups, and I’ll wager that PBRT goes 5 for 5 in prevailing to a statistical significance. Substitute IMRT for RP and I’ll offer that proposition as well.

  10. Robb:

    I don’t bet on things like this. Just go get someone truly independent to do the satisfaction studies you are proposing.

    With regard to your first point … the theories of physics and their medical outcomes when applied in clinical practice have a profound ability not to necessarily correlate in the ways you might think. Many academic radiation oncologists are unconvinced by the theories behind why PBRT “must” be safer for men with prostate cancer.

    I note that like every satisfied and passionate PBRT patient, you appear to be willing to ignore my point that the clinical outcome data are missing in action. (This is the same point as that being made by Dr. Chodak, who was the original stimulus to the formation of Us TOO — but he is a surgeon, so he is at risk for bias, just like you and Bob Marckini.)

  11. Sitemaster,

    Is not PBRT the accepted standard of care for cancerous tumors to the head, neck and spine, precisely because it is so targeted and spares surrounding tissues/structures in the body? If you agree, then please cite the academic radiation oncologists who would unhesitatingly prescribe PBRT for a tumor of the spine but who would then be reluctant to recommend the same treatment modality for cancer of the prostate? I’d like to write them to better understand this contradiction.

    Moreover, I don’t believe I am “ignoring” your point about clinical outcome data. I grant that Loma Linda has been wanting in that arena but that the University of Florida has picked up the slack over the past year, publishing 2-3 pieces in journals. I know for a fact that MD Anderson is right behind them, Anderson’s delay being attributable only to wanting an average of 5 years follow-up before publishing their findings (they’ve only been at PBRT since 2006 or 2008). I assure you that your skepticism will be met with many positive studies over the next few years as more extensive results become available outside of Loma Linda.

    It’s amazing to me the misinformation and unfounded doubts swirling around about PBRT. What a disservice! Other than Ralph, I frankly haven’t heard of even one other dissatisfied customer — and I have spoken with and/or e-mailed literally hundreds of men since my research and treatment began. Are you the type of person who mocked a personal computer as an “expensive tabulating machine” back in 1980? I encourage you to give PBRT a chance (like the personal computer) and allow it to become better, cheaper, and faster as time goes by and the technology is refined and improved. Mini-PBRT machines that operate in a less costly manner are already on the immediate horizon.

  12. Dear Sitemaster,

    Thanks for your last comment. Although it gives no detail, it does support your suggestive explanations given to me a few weeks ago about why standard physics alone might not be all one needs when objectively evaluating the physiological pros and cons of PBRT.

    Satisfaction is a difficult subject, probably very hard to study statistically. How a given prostate cancer patient feels about satisfaction after treatment is in part a trade-off of severity of effects versus desires for survival and concern about aspects of quality of life. To get concrete, in my case the trade-off (before and after treatment) was between preservation of ultimate goals formulated well before diagnosis and treatment, with risks and severities that I was fully informed about. I value the goals so highly that I now, very near end of treatment, rank them higher than the actual and possible adverse effects. This seems to be such a personal matter that a general assessment of satisfaction (individually or across patients) might be hard to obtain, for at least two reasons: deciding on the sort of statistical analysis to use, and thinking up a good test description of personal goals and other desires. I don’t even know what I mean by “good” here.

  13. Dear Robb:

    (1) The data now coming from M. D. Anderson and elsewhere is 10 years late. We wouldn’t be in the current situation if Loma Linda had done even a half-decent job. I personally believe that the data coming from the new centers is starting to justify even more strongly why PBRT may be no more effective or safe than IMRT and SBRT for the treatment of prostate cancer. And I am far from being the only person who thinks this.

    (2) The last president of ASTRO, and one of the leading specialists in the radiotherapeutic treatment of prostate cancer, Dr. Anthony Zeitman, at Harvard, has written and been interviewed extensively on why he believes we need randomized trials comparing outcomes of patients treated with PBRT and SBRT. He is just one of dozens. And he is someone who has done research and been published in this area because he has had access to the older and the newer PBRT equipment at Harvard.

    (3) You don’t need to be gratuitously insulting. I was actually helping to build computers as long ago as the 1960s and I was building web sites in 1985, just months after Netscape first became available.

    (4) I am not saying, and I have never said, that men shouldn’t get PBRT if they want it. What concerns me is that I see no justification for the cost differential. IMRT is more expensive than the older 3D-CRT, but it clearly demonstrated greater effectiveness and safety. PBRT has never done this, so why should we be paying more for it? Most of the new PBRT centers are only going to be economically viable if they treat thousands of men with prostate cancer each year, but we have no data to justify the cost. If it’s no better than IMRT, then we shouldn’t be paying more for it.

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