I had an interesting day this past week. Sadly, it left me wondering why the same “hope and hype” directed at cancer patients and their families decades ago when I started my oncology career was still alive and well today. But then, maybe I am the naïve one to think that anything should have really changed.

In the morning I found out that a story I had been interviewed for a story which appeared on the Kaiser Health News website. A discussion about proton beam therapy for cancer (PBT), it basically pointed out that insurers aren’t necessarily paying for the treatment and that the information supporting its use is not as definitive as some would hope or claim.

Not long after, I was informed of an online discussion  on Twitter (called a “tweet chat” at #protonbeam) being hosted by a major medical institution and a well-known weekly newsmagazine on the very topic of proton beam therapy, or PBT. What I watched unfold over the hour-long discussion was what I call a “scrum” of doctors and public relations people promoting proton beam therapy as the answer to many cancer treatment dilemmas with nary a word about the  limitations of our knowledge or potential problems with the treatment. It was all about “we can do it, call us and we will tell you how good we are, and insurers won’t pay us.” Simply stated, the “conversation” seemed to be glancing by some of the inconvenient facts surrounding what has become another poster story for how we develop and promote new treatments in medicine, let alone cancer care.

PBT has been around for a while, at least in principle. More recently, we have seen the deployment of PBT centers first at a handful of major, highly regarded cancer centers. Now PBT centers are popping up across the country. And some cities are boasting multiple centers, sometimes run by competing major medical centers, sometimes funded and run by private companies. But what appears to be happening is that a treatment that is particularly effective for a handful of relatively uncommon cancers is being touted for use in a wide variety of cancers where there hasn’t been much proof of benefit that it is superior to more available and less expensive (emphasize “less expensive” because radiation therapy is still expensive) alternatives.

What we have seen is an explosion in the use of PBT for prostate cancer over the past several years. Not that PBT can’t be used to treat prostate cancer; it’s just that its superiority hasn’t been exactly a runaway success, as you quickly learn when you read some of the research published in the medical literature. But that hasn’t stopped men from flocking to the doors of these centers in the belief that the more focused and powerful radiation beams are better than what they can get down the street at the local hospital or radiation center. And don’t let the pesky fact that many men don’t need treatment for their lower grade, localized prostate cancer get in the way of the proton beam (or other forms of radiation or surgery, for that matter). We have become accustomed to believing that every cancer is a life threatening cancer, even when experts are beginning to question that such is the case.

So here are what I call some of the inconvenient thoughts and statements that make medical decision making so hard for patients, families, and quite honestly for many health care professionals who sometimes are as influenced about advertising claims as their less educated, non-medically oriented patients:

From the National Comprehensive Cancer Network, a respected consortium of major cancer centers that publish guidelines on the treatment of cancer that are widely recognized and accepted within the oncology community on the topic of PBT in the treatment of prostate cancer:

Proton beams can be used as an alternative radiation source. The costs associated with proton beam facility construction and proton beam treatment are high. Two comparisons between men treated with proton beam and (external beam radiation therapy) show similar early toxicity rates. A single-center report of prospectively collected quality-of-life data … revealed significant problems with incontinence, bowel dysfunction, and impotence. Perhaps most concerning is that only 28% of men with normal erectile function maintained normal erectile function after therapy.

The NCCN panel also echoed the following statement by ASTRO (the American Society for Therapeutic and Radiation Oncology) in its review of proton beam therapy:

Prostate cancer has the most patients treated with conformal proton therapy of any other disease site. The outcome is similar to IMRT (intensity modulated radiation therapy, a standard and widely available radiation treatment for prostate cancer), however, with no clear advantage from clinical data for either technique in disease control or prevention of late toxicity. This is a site where further head-to-head trials may be needed to determine the role of proton beam therapy … Based on current data, proton therapy is an option for prostate cancer, but no clear benefit over the existing therapy of IMRT photons has been demonstrated.

This is not some fly-by-night group making this statement. This is from a collaboration of 25 major cancer centers who write what most doctors consider excellent guidelines for the treatment of cancer. It is a group that is highly regarded in oncology circles. What they say is generally considered the best advice available, and some of the centers sitting around that table own proton beam facilities. And they are — I would suggest — very cautious in promoting proton beam therapy for prostate cancer as is ASTRO, which happens to be the professional association of radiation oncologists, the very doctors who use proton beams and more traditional forms of radiation.

Here is another statement from ASTRO that appears on their website and is dated February 2013:

While proton beam therapy is not a new technology, its use in the treatment of prostate cancer is evolving. ASTRO strongly supports allowing for coverage with evidence development for patients treated on clinical trials or within prospective registries. ASTRO believes that collecting data in these settings is essential to informing consensus on the role of proton therapy for prostate cancer, especially insofar as it is important to understand how the effectiveness of proton therapy compares to other radiation therapy modalities such as IMRT and brachytherapy.

In June of this year, ASTRO posted a position paper on PBT. In that paper, they listed the tumors they thought had sufficient evidence to justify PBT. Among them:

Ocular tumors, base of skull tumors, spinal cord tumors where traditional radiation may be excessive or an area that had received prior radiation, primary or benign primary tumors in children, patients with genetic syndromes where minimizing the total volume of treatment had to be minimized.

Folks, that is in real life a pretty narrow list of treatment candidates.

Then there was a “Group 2” where ASTRO recommended that insurers cover treatment, but where, in their words:

Radiation therapy for patients treated under the CED (coverage with evidence paradigm) should be covered by the insurance carrier as long as the patient is enrolled in either an IRB (institutional review board) approved clinical trial or in a multi-institutional patient registry adhering to Medicare requirements for CED.

The list of tumors where evidence of additional benefit is needed includes some common cancers:

Head and neck cancer, thoracic (lung) cancers, abdominal cancers, and pelvic cancers including genitourinary [that’s prostate], gynecologic and gastrointestinal malignancies.

 A lot broader list, to say the least, but doesn’t exactly sound to me like it’s a done deal. More like, “We think it works, but still need to prove it.”

Getting back to that chat I referred to earlier, I won’t bore you with the list of “tweets” that I excerpted from the hour-long session. Let’s just say you are welcome to look at them yourself at Twitter.com #protonbeam. Make sure you indicate “all”, since you really have to look at all of them to get a flavor of what transpired.

However let me just say that if you spent the hour I did, and you were not sophisticated in the ways of medicine, you would come away from that hour with the impression that proton beam was a proven therapy, useful-and perhaps better–in routinely treating a number of cancers, and have no idea how much of this still needs to be formally evaluated to prove that it is more effective than more traditional radiation therapy.

And some of the comments bordered close to medical self-promotion: essentially “give us a call and we will tell you whether you are a candidate for proton beam”. Look at our website for the research on how effective proton beam is for treating cancer,” with occasional links to abstracts and posters and a couple of published papers, but none of the existing research that comes to less-than-positive conclusions.

Let me give you an example:

A … study found proton therapy has advant. over IMRT for advanced head and neck cancers: http://mayocl.in/1mhuE5m  #protonbeam

So I went to the study and this is what I saw in the conclusion:

Interpretation:

Compared with photon therapy, charged particle therapy could be associated with better outcomes for patients with malignant diseases of the nasal cavity and paranasal sinuses. Prospective studies emphasizing collection of patient-reported and functional outcomes are strongly encouraged.

Once again, not exactly a done deal, is it?

And then there was the question as to whether there were any patients who were NOT candidates for PBT. If this wasn’t so serious, the responses would be laughable:

“If pts will NOT benefit from RT then probably not benefit from protons.”

“IMO, if patients have poor life expectancy, protons should not be used.”

“Non-curable, elderly, some with metallic implants.”

“For patients with metastases, PBT is not usually considered a good option.”

Certainly doesn’t sound there are a lot of people who shouldn’t seek PBT, does it? No mention about patients seeking treatment for cancer for which proof of benefit is lacking. Remember those Group I and Group II  lists mentioned above?

I could go on and cite more examples. The problem is that there was little if any balance in this chat or some of the promotional material I have seen. Yet the professional organizations that should know this stuff are a bit more sanguine, and a bit more realistic, and a bit more in the camp of “we have more to learn.” But the public doesn’t know that, and the public doesn’t see that.

As the chat was drawing to a close, there was someone — who I don’t believe is a physician — who made some online comments about the imbalance of the information offered by the physicians and the PR people. But when you have invested millions of dollars in one of these machines, and need patients coming in the front door with their insurance and Medicare money in hand in order to survive, who cares about balance?

I will say that I have been in educational sessions where doctors from these very same institutions have provided lectures to their peers. More data-based, more realistic, more in line with what we would expect from knowledgeable and caring professionals. But on this day, at this moment, some of that balance was sorely lacking.

Social media has brought to “the people” much of what used to be discussed only in medical meetings, or by the press and its subjects. But the sad reality is that there are some things that have not changed. Social media is vulnerable to the hope that cancer patients seek, and those who respond by providing the hype those patients and families want to believe-even if it inflates what we know to be the proven facts.

What we need is balance and information that those afflicted with this terrible and dread disease we call cancer can rely on. What we all need a lot less hype and much more informed hope.

J. Leonard Lichtenfeld is deputy chief medical officer, American Cancer Society. He blogs at Dr. Len’s Cancer Blog.