The State of Tumortown

L Kirk Hagen. Skeptic. Volume 21, Issue 4. 2016.

In May 2016, John Horgan of Scientific American wrote a blog in which he chastises “Capital-S” Skeptics for obsessing over “soft targets” like homeopathy and Bigfoot while neglecting “hard targets” like warfare and our dysfunctional cancer culture. Horgan thinks Skeptics should be more skeptical of science. His objective is admirable. His aim is hit-and-miss. The biggest miss is his claim that war is a cultural “innovation” that emerged about 12,000 years ago. One problem: The human diaspora had gone nearly global by 10,000 BCE. Humans arrived in the Americas 6,000 years before Horgan’s war-invention date. They made it to Australia much earlier, and there is overwhelming evidence of prehistoric warfare in both of those places. If war is an invention, it has obviously been invented many times. Horgan has merely kicked the can down the road, and now owes us an explanation of why humans seem to invent warfare nearly every chance they get.

On the other hand, Horgan merits a partial hit for his comments about the war on cancer. He doesn’t get full credit because he cherry-picks his data. Horgan first laments that America ranks 34th worldwide in longevity. We’re actually 31st, but more important, the distribution of longevity is skewed. Japan leads with a life expectancy rounded off to 84 years. Seven countries tie for second place at 83, ten are at 82, and eleven are at 81. Just 4.4 years separate the USA from the top spot. At 31st from the bottom, on the other hand, are Papua New Guinea and South Africa, at 63 years. That’s 16 years behind the USA, and 13 years ahead of last-place Sierra Leone.

Horgan also claims that “Europeans have lower cancer morality [sic] rates than Americans.” But the International Agency for Research on Cancer says that in 2012, Europe had slightly higher age-standardized rates of cancer than the U.S. Cancer Research UK says they are slightly lower. The differences are not huge, and depend in part on the quality of data reporting. In another blog, Horgan says that our age-adjusted death rate for cancer “has fallen by only five percent since 1950.” He cites a New York Times article by Gina Kolata. There, the data trail goes cold; Kolata doesn’t say where this figure comes from. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) puts the decline at 12.1%. Since 1975, age-adjusted cancer death rates have fallen by 18%.

So the news on the cancer war front is not great, but it is not quite the bust that Horgan makes it out to be. Still, his point that our cancer care culture has gotten a pass for too long deserves a response. Here’s an example. When the “Skeptic’s Skeptic” Christopher Hitchens was diagnosed with esophageal cancer in 2010, he was a millionaire who could afford the best treatment available. In his posthumous Mortality, Hitchens says he chose “the highly advanced expertise uniquely available” at the MD Anderson Cancer Center in Houston, which U.S. News & World Report had rated as the best oncology center in the U.S. for seven straight years. While Hitchens had been mercilessly skeptical of religion, he was surprisingly uncritical of the business he called “Tumortown.” “What do I hope for?” he asked in Mortality, “If not a cure, then a remission.” Neither was a realistic possibility. The 5year survival rate for metastatic esophageal cancer is dismally below 5%. Throughout his treatment, recalls his widow Carol Blue, Hitchens “responded to every bit of statistical and clinical good news with a radical, childlike hope.” To be fair, Hitchens had studied religion his entire adult life. He had all of 18 months, in the worst imaginable circumstances, to learn about a disease that kills 589,000 Americans yearly. Had he survived longer, he might have realized that America’s most recognizable cancer centers, MD Anderson included, habitually overstate their success, and promote treatments whose therapeutic values are unclear or have already been debunked.

Horgan, however, is wrong in suggesting that this is a failure of science. The one thing we have learned about the 200 or so variants of cancer is that they present challenges spectacularly more complex than anyone had ever imagined. It is tragically comical to recall that in 2003, Andrew von Eschenbach, an MD Anderson alum who became director of the National Cancer Institute, declared that the goal for his agency was “to eliminate suffering and death due to cancer by 2015.” As the quote suggests, the real problem has to do with the way cancer care is being hyped to consumers.

The Hospital That Makes No Claims

I will return to Hitchens’s case in a moment. Let me first offer a primer in Tumortown’s marketing ethos from the Cancer Treatment Centers of America (the CTCA), a for-profit chain of five hospitals that treat cancer exclusively. The CTCA is nowhere to be found on the U.S. News & World Report’s ranking of best cancer centers, but its annual advertising budget of $100 million exceeds that of all other cancer centers combined. CTCA also stands out for audacity in claiming that its survival rates are better than those of other hospitals; a boast no other hospital has challenged.

One two-minute TV ad features prostate cancer survivor Jimmy Goodwin, who finds out he has elevated PSA levels and travels to a CTCA hospital for a second opinion. A doleful narrator chimes in to invite viewers to go to CTCA’s website to learn about “unique treatment options for complex and advanced-stage cancer.” Goodwin says “you just go online, and if you have prostate or lung cancer, or whatever, you can see what their survival rates are.” The narrator again mentions CTCA’s “unique treatment options.” The ad quickly segues to a description of the Calypso Localization System, which uses transponders to track organ movement during radiation therapy. The narrator then repeats the warning that “every minute counts when you’re fighting complex or advanced-stage cancer.” Mr. Goodwin, meantime, goes back to work, better off than he was before treatment.

Consumers could be forgiven for concluding that Mr. Goodwin was treated for complex or advanced stage cancer. You have to look closely at the six-second mark of the ad where, for exactly two seconds, the words “Stage 2A Prostate Cancer Patient” appear in small print below Mr. Goodwin’s name. The five-year survival rate for Stage 2 prostate cancer is above 98%, no matter where one is treated. Mr. Goodwin never says he has advanced-stage cancer. It is the invisible narrator who repeats that freak-out phrase without referencing Mr. Goodwin in particular, even though Mr. Goodwin is the only patient appearing in the ad. Consumers might also conclude that Calypso is uniquely available at CTCA, because that is the only treatment the ad mentions. But Calypso is widely used in the USA and Europe. The “unique treatment options” that Mr. Goodwin enjoyed at CTCA included naturopathic medicine, mind-body medicine, and acupuncture.

Consumers might also be left with the impression that Mr. Goodwin personally went online to see how his survival rates compared to national averages. He couldn’t have, because the CTCA doesn’t publish survival rates for Stage 2 prostate cancer. Why would they, when rates everywhere approach 100%? Mr. Goodwin says that you can go online to check. And if you do, be ready to be misled again. CTCA outcomes don’t differ from SEER’s by that much. The SEER survival rate for patients in Hitchens’s cohort (1.5 years) in 2011 was 16%. At the CTCA, it was 17%. SEER results for the 2-year survival cohort were actually better than CTCA’s. MD Anderson’s marketers note that cancer patients, understandably overwhelmed by a terrifying diagnosis, usually do “very little online research prior to treatment.” Apparently, the CTCA’s marketers have figured that out as well.

Hidden in CTCA’s website is one of the strangest disclaimers you will ever read. The CTCA “makes no claims about the efficacy of specific treatments, the delivery of care, nor the meaning of the CTCA and SEER analysis.” So the CTCA does not know what its own data mean. Why would consumers? Just as odd is CTCA’s other half-hardheartedly apologetic boilerplate disclaimer:

The CTCA sample is relatively small because only [insert type of cancer here] patients who had been initially diagnosed at CTCA and/or received at least part of their initial course of treatment at CTCA were included.

This exclusion is entirely self-imposed. As luck would have it, patients not initially diagnosed at a CTCA hospital are likely to be at a more advanced stage of cancer. You have to go three clicks deep into the website to find CTCA’s other admission that “many factors (e.g., income, access to health care/insurance, mobility) … could also have contributed to the survival outcomes.” In plain English, the poor, the uninsured, and sickest don’t figure in the survival rates that the CTCA brags about one minute and then disclaims the next.

The Proton Controversy

The CTCA stands out for its unusually cynical focus on profits and marketing. But even the most prestigious cancer centers in the U.S. have given in to the temptation to oversell services in a fiercely competitive market that will soon reach $180 billion annually. Which brings us back to Christopher Hitchens. His widow mentions in the Afterword to Mortality that Hitchens had been captivated by the “cuttingedge proton radiation treatments he underwent” at MD Anderson. Proton beam therapy (PBT) irradiates tumors with charged subatomic particles rather than with photons, which are used in the down-market Intensity Modulated Radiation Therapy (IMRT). The putative advantage of PBT is that the beam’s energy follows a hockey-stick trajectory through human tissue, reaching its peak (the Bragg Peak) at the tumor, and then dropping off sharply. In principle, this causes less damage to healthy organs as the beam enters and exits the body. Proton facilities are massive and massively expensive. Their gantries weigh close to 200 tons each, and start-up costs alone can exceed $200 million. Patients pay more than twice as much for PBT as they do for IMRT.

In a PBS interview, Carol Blue described PBT as a “wonderful form of radiation that’s only available in a few hospitals,” all of which are in higher-income urban centers. Travel and lodging expenses for patients and their families who live at a distance add to the cost (a PBT regimen for prostate cancer requires daily treatment for eight weeks, for example). MD Anderson’s marketers admit to exploiting provincial fears of patients and families who don’t live in the high-dollar, hi-tech cities. Yet even urbanites have cause to worry. When all the major insurers abruptly dropped their Preferred Provider Organization (PPO) plans from the healthcare exchange in Houston in 2015, about 2,000 MD Anderson patients found themselves out-of-network, and therefore out of reach of the hospital’s proton therapy center.

Now, the worse news. While PBT has been around for more than a quarter-century-which rather distances it from the cutting edge-it has not been shown to produce better outcomes than the much cheaper IMRT. In 2012, Aaron Allen and his colleagues reported on the conclusions of their twoyear Proton Task Force to the American Society For Radiation Oncology. They did not find “evidence to recommend PBT in lung cancer, head and neck cancer, GI malignancies, and pediatric non-CNS malignancies,” nor for liver or prostate cancer. Prostate cancer is an attractive target for PBT because (1) the prostate is adjacent to many organs at risk, and (2) there is a huge customer base of more than 180,000 men diagnosed every year in the U.S. Hoppe et al. studied more than 1,400 men who had undergone radiation treatment for prostate cancer. They too found no differences on quality of life measures between those treated with PBT and those treated with IMRT. Sheets et al. in the Journal of Clinical Oncology found higher rates of gastrointestinal morbidity associated with PBT. When Indiana University Hospital closed its proton center in 2015, it cited a “failure of investigators to demonstrate in a scientifically robust fashion the putative benefits of this therapy.” The most jarring summary comes from R. J. Shulz in the Journal of Applied Clinical Medical Physics: “It is eminently clear from phase II evaluations of the more common cancers that the clinical outcomes of PBT are no better- nor any worse-than those achieved by IMRT.”

To read the promos on proton center websites, you would never know that any such controversy exists. All of the 22 centers now operating in the U.S. make favorable comparisons to IMRT; some explicitly, others implicitly, and almost all by careful equivocation. The Loma Linda Cancer Center states categorically that proton therapy is “better than standard radiation therapy for cancer because it is more precise and causes less damage to a patient’s body.” Implicit comparisons refer to PBT as “the most advanced cancer treatment available,” or as “less likely” to cause side-effects, without naming what is less-advanced or more likely. Equivocal claims are predictably crutched on modals like can or may, or else dodgily shift to the passive voice. The Texas Center for Proton Therapy in Dallas says “proton therapy may have fewer side effects than traditional X-ray radiation.” The Seattle Cancer Care Alliance says that proton therapy “is expected to result in fewer shortand long-term side effects.”

Most of these claims have to do with limiting tissue damage. However, more than half of the PBT centers make a stronger claim about improved quality of life from PBT, as in Seattle Care’s straightforward assurance that “patients experience better quality of life during and after treatment,” which conflicts with its other, watered-down claim limited to “expectations.” Provision Proton Therapy Center’s website has this particularly gutsy testimonial: “The quality of life after normal therapy is not so good, but with proton therapy it’s better…much better.” Provision also prudendy disclaims the reliability of this testimonial on its Terms of Use page, accessible from a tiny link in the site’s footer. To its credit, the Willis-Knighton Proton Therapy Center admits that nobody really knows if PBT leads to better outcomes than IMRT.

Proton centers are not above borrowing slogans from others. MD Anderson says its “196-ton cancer killing machine” can “target a patient’s tumor with sub-millimeter precision while sparing nearby healthy tissues and minimizing side effects.” The Maryland Proton Treatment Center says its machine enables physicians “to target the cancer cells with millimeter precision while sparing normal, healthy surrounding tissue in the rest of your body.” MD Anderson also says this:

Proton radiation, once inside the patient’s body, has a very short life. After patients complete their treatment, they can leave the treatment room without any risks of radiation exposure to others.

Seatde Care, which is not affiliated with MD Anderson, uses the same text, verbatim, on its website.

The boldest pitches are rarely defended with research. When they are, they can be as misleading as the CTCA ads. The following is from a press release on ProCure Oklahoma’s website:

Within three months of completing proton therapy for prostate cancer, men reported having exactly the same urinary and bowel function they had before treatment-an outcome often not seen until as long as two years after other forms of radiation treatment, according to a study being presented at the 54th Annual Meeting of the American Society for Radiation Oncology.

You have to parse the claim carefully. The anonymous author is comparing typical PBT outcomes to outlying, worst-case scenarios of other, unspecified treatments. The study in question did not compare PBT and IMRT outcomes. It compared one group of patients who received PBT to a control group of patients who never had cancer in the first place. Other than Willis-Knighton, the only voice of restraint in this PBT love-fest is the UCSF Medical Center, which confesses: “The data are inconclusive as to whether proton therapy yields better outcomes than X-ray therapy.”

Robots and Immunotherapy

No matter where in Tumortown you look, you can find the fingerprints of marketers griming in this fashion the serious work of clinicians and researchers. Robotic surgery, now available in every top cancer center in the USA, has been promoted by a campaign remarkably similar to PBT’s. Like the proton therapy monstrosities, surgical robots are glamorous, cuttingedge, and costly. But it’s not clear that they lead to better outcomes than cheaper laparascopic surgeries. In a 2011 article in the Journal for Healthcare Quality, Linda Jin and colleagues pointed out that a third of the 400 hospitals they investigated specifically assert better results from robotic surgery, without supporting evidence. None mentioned risks, which include nerve damage, burns to adjacent organs, and higher rates of heart attack and stroke associated with the longer periods of anesthesia. Jin et al. concluded that hospital websites promoting surgical robots “overestimate benefits, largely ignore risks and are strongly influenced by the manufacturer.”

The latest entry into the cancer hype-stakes is immunotherapy. Dendreon was the first company to launch a nationwide TV ad campaign promoting an immunotherapeutic drug. But it soon went into Chapter 11 bankruptcy when its showcase Sipuleucel-T for hormone refractory prostate cancer failed to impress physicians and patients alike due to its exorbitant cost ($90,000) and its modest benefits (4 months median life extension). That episode has done little to dampen enthusiasm. In June 2015, the Telegraph ran a story under the sensationell headline ‘”Cure for terminal cancer’ found in game-changing drugs.” Fox News said it was only a “possible cure.” Both were reporting on a study in the New England Journal of Medicine of two drugs for treatable melanoma. In the course of the clinical trials, 35% of the 945 participants had to withdraw due to adverse events. The median rate of progression-free survival for one drug, ipilimumab was a scant 2.9 months. For the other, nivolumab, it was 6.9 months. By one estimate, a combined ipilimumab/nivolumab regimen could cost as much as $1 million per patient per year. The word “cure” does not appear in the NEJM article.

The CAM Scam

The most disturbing trend in cancer care is the ongoing infiltration of complementary and alternative medicines (CAMs) into otherwise legitimate cancer hospitals. As of 2016, every cancer hospital on the top of U.S. News & World Report’s list of America’s best either has its own CAM center or openly markets CAM services. Memorial Sloan Kettering’s Bendheim Integrative Medicine Center offers aromatherapy, Qi Gong, reflexology, hypnotherapy and a slew of other fantasy treatments. At Dana-Farber’s Zakim Center for Integrative Therapies, you can waste as much time and money as you like on Qi Gong, acupuncture, massage therapy, and Reiki. The UCLA Medical Center has a partnership with the Urban Zen Foundation (Reiki, essential oil therapy, and contemplative care/mindful awareness exercises). Not to be outdone, the stellar MD Anderson’s CAM center has Tai Chi, Tibetan meditation, group drumming, acupuncture, and “laughter for health.”

This has led to some awkward advertising moments in which hospitals warn patients about the very treatments they now offer. Sloan Kettering’s Chief of Integrative Medicine Service boasts of having “studied, published, and lectured internationally” on “alternative therapies” for more than 25 years. The hospital itself advises its patients: “alternative regimens are unproved, expensive, and potentially harmful.” Zakim deserves recognition for the cleverest word-smithing: “Medical experts worldwide now view integrative therapies as an effective complement to surgery, chemotherapy, and radiation.” Does this mean that there is now a global consensus that CAMs are effective, or that Zakim can identify at least one expert on each continent who takes CAMs seriously? MD Anderson gets honorable mention for cramming the most weasel-words into a disclaimer:

Many cancer patients find relief from complementary therapies, while others have found them to be ineffective or have reported problems. Although some complementary therapies are useful for cancer patients, others may be harmful in certain situations.

In other words, some but not all patients may or may not benefit from some but not all CAMs, while others may or may not experience harmful side effects. Or else nothing might happen.

The CTCA may be an also-ran in hospital rankings, but no one can match its stock of specious therapies, which includes acupuncture and chiropractic, guided imagery, and naturopathy (42 of the doctors listed on its website are actually NDs, or naturopathic “doctors”). The CTCA even offers homeopathic remedies, and asserts-falsely, and without so much as a Quack Miranda warning-that they “gently strengthen the body’s healing and immune response.” Not to be outdone by MD Anderson, the CTCA has its own laughter therapy program. It tells its patients: “A growing body of research supports the theory that laughter may have therapeutic value,” and “Surgeons used humor to distract patients from pain as early as the 13th century.” In our $200 billion dollar cancer-care culture, unattested medieval therapies have somehow become marketing assets.

Tumortown, USA

The danger from CAMs is not in the pseudo-treatments themselves. Most of them do no harm. They pose a much greater threat to the uninsured and under-insured. Even in the age of Obamacare, about 33 million Americans lack insurance. Medical expenses are still the leading cause of personal bankruptcies in the U.S. In dire circumstances, when one is not thinking with due lucidity, the temptation to turn to cheap alternatives that are bountiful outside of mainstream medicine can be irresistible. When legitimate hospitals host CAM services-by whatever name they choose to call them-they implicitly abet a shameful industry.

Those hospitals could also benefit from some soul searching about the way they sell their conventional treatments. Many insist that their websites are “informational” or “educational,” even when they are obviously promotional. Outright fabrication is rare; deception by half-truth and studied omission is pervasive. We really can cure, prevent, and slow the progression of some kinds of cancer. However, advances have been slow, uneven, and heartbreaking. As the U.S. population ages, there will be a growing demand for cures that simply don’t exist. When a couple of hundred billion dollars are up for grabs every year, there will be grabbers in flocks, and guileful marketers at the ready with their services. Advertising budgets for cancer care have tripled in the past decade alone.

I need to add a few cautionary words about one claim in Horgan’s indignant sermon on cancer treatment in “Dear Skeptics:”

For every woman whose life is extended because a mammogram detected a tumor, up to 33 receive unnecessary treatment, including biopsies, surgery, radiation and chemotherapy. For men diagnosed with prostate cancer after a PSA test, the ratio is 47 to one.

Mammograms detect masses, not necessarily tumors. Women do not get surgery, radiation or chemotherapy on the basis of a mammogram alone. PSA tests do not diagnose cancer. They just flag abnormalities that often indicate benign conditions. PSA screening sometimes leads to biopsies, and biopsies sometimes detect cancer. A biopsy is the only way to diagnose prostate cancer, and only hindsight makes a biopsy “unnecessary” when its results are negative. The news of a false-positive mammogram, or of elevated PSA levels, can be unsettling. The consequences of forgoing regular screening can be much worse. Mammograms and PSA tests cost about $100. Long-term care for advanced-stage cancer runs into the hundreds of thousands. There are about 65,000 deaths from breast and prostate cancer every year in the U.S. That’s double the annual death toll from gun violence, and not particularly strong evidence against screening, however imperfect it may be.

I have to confess to a conflict of interest in this discussion, since I am one of those one-in-47 whom Horgan mentioned; the one whose cancer was flagged by PSA testing, later confirmed by biopsy at Stage 3 (after an earlier biopsy came back negative), and then treated robotically, expensively, and expertly. In Houston no less, while Christopher Hitchens was undergoing more brutal treatment a few blocks away. Had my disease advanced one more stage, the odds would be against me having lived long enough to write this article. Not to beat a dead horse, but the CTCA charts put the SEER survival rates for metastatic prostate cancer at only 24%, when in fact they are 29%. CTCA claims its own are 31%.

Personal bias aside, Horgan has legitimately called our attention to a viper’s knot of serious ethical questions about the way cancer care is being pitched, delivered, and even rationed to the public. The problem isn’t that we are over-tested and over-treated, but that we are over-charged and misinformed. We expect inveigling from home contractors and car-sellers, and from the other businesses that reliably top lists of consumers complaints. We don’t expect it from those entrusted with our well-being when we are at our most vulnerable.