Tag Archives: science

  

The New York Times’ history of covering (up?) breast cancer

After Roger Ebert’s death last week, I picked up The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee, which was recommended during a discussion on how the war on cancer seemed hopeless. I’m not finished with the book yet, but I can already recommend it for being one of the best medical non-fiction books I’ve ever read.

The facts in Mukherjee’s “biography of cancer” seem to indicate that “no simple, universal, or definitive cure is in sight – and is never likely to be”, but Mukherjee also believes that medical science continues to make profound progress in understanding and treating cancer. And if anything, we might be farther along had we funded cancer research with the resources and commitment it requires.

After World War 2 drained interest and funding from cancer research, Mukherjee writes, “cancer again became the great unmentionable, the whispered-about disease that no one spoke about publicly.” As an example, he retells a story from the 2001 book, The Human Side of Cancer, in which a breast cancer activist describes being shunned by the New York Times:

In the early 1950s, Fanny Rosenow, a breast cancer survivor and cancer advocate, called the New York Times to post an advertisement for a support group for women with breast cancer. Rosenow was put through, puzzlingly, to the society editor of the newspaper. When she asked about placing her announcement, a long pause followed. “I’m sorry, Ms. Rosenow, but the Times cannot publish the word breast or the word cancer in its pages. “Perhaps,” the editor continued, “you could say there will be a meeting about diseases of the chest wall.” Rosenow hung up, disgusted.

The original source for Rosenow’s story – The Human Side of Cancer, by Dr. Jimmie C. Holland – has an upbeat coda:

However, [Rosenow and her friend] persisted, and their devoted efforts resulted in what is widely known as Reach to Recovery, a worldwide support program for women with breast cancer, administered today through the American Cancer Society.

Sixty-five years after the era of the Cleaver family, we’re still having serious debates over whether mothers should be allowed to breast-feed children in public. And Lady Justice herself was shamed about her wardrobe malfunction not too long ago. That the Times, still a stodgy paper today, would be too squeamish 65 years ago to print the word “breast” seems, well, self-evident. And so Rosenow’s story has been repeated in much of the major media coverage of Mukherjee’s book, including NPR, the Boston Globe, and even the New York Times itself.

What Ms. Rosenow described may have actually happened (it’s not like she or the Times society editor had Google or Lexis-Nexis back then), but a quick search of the New York Times digital archive shows that the Times had published articles about breasts and cancer throughout the 1950s.

For example, on September 24, 1950, the Times ran a story headlined “Movie Aids Cancer Detection:”

A color film designed to aid women in recognizing early signs of breast cancer is available for showings before Brooklyn women’s groups. Titled “Breast Self-Examination,” it was produced by the American Cancer Society and the National Cancer Institute of the United States Pubic Health Service.

Besides running notices of which local theaters were screening “Breast Self-Examination,” the Times also wrote several articles about the movie’s educational impact: “Cancer Film Saves Lives”, the Times reported on April 22, 1951. And, a year after the film’s introduction, the Times reported its success: 911,000 SAW CANCER FILM; Year’s Record Cited in Showing Self-Test for Women. And of course, the Times found fit to print the obligatory self-back-patting hug-your-newspaper-today feature: NEWSPAPER AID PRAISED; Cancer Experts Say Sufferers Gain by Care Publicity:

Newspapers and the radio were credited today with helping doctors fight cancer by causing sufferers to seek early treatment.

“There is no question but that the information made public by newspapers, radio, and other news services is making it possible for us to see patients with breast cancer earlier than ever before,” Dr. J. Elliott Scarborough, Jr., declared.

In fact, the breast cancer advice that the Times printed in 1952 doesn’t seem far removed from what you’d find in any contemporary medical column:

SELF-EXAMINATION URGED: Women Must Detect Early Stage of Breast Cancer, Doctor Says

If breast cancer is to be detected in its early stages, it is the women themselves who must do it…Dr. Haagensen said the breasts should be examined at least every two months to be reasonably sure they are free of cancer signs…Physicians, Dr. Haagensen said, should teach women self-examination.

Of course, cancer is a far more common topic of public concern and media coverage today. As Mukherjee himself points out, that’s because until relatively recently, humans generally didn’t live long enough to die from cancer. One of the earliest mentions of breast cancer in the Times archive occurs in 1852, in its column titled, Weekly Report of Deaths in the City and County of New York. Between January 10-17, the Times noted 324 deaths, the majority of them children. The top killers are diseases we rarely hear today: 54 deaths from consumption, 28 to convulsions, 20 to scarlet fever, 18 to “Dropsy in the head.” In contrast, “Cancer” and “Cancer of Breast” accounted for 1 death apiece. That cancer has become medicine’s public enemy number one is almost a sign of wealth and progress. In impoverished countries, cancer doesn’t even rank among the top 10 in causes of death.

If you’re interested in taking a depressing trip through medical history, type “cure for cancer” into the Times’ digital archive. You’ll find headlines from every decade – if not every one or two years – since 1852 touting a promising development in the fight against cancer:

If the war against cancer seems like an unending series of misguided schemes and false hope – much like our ongoing wars against terror, drugs, and poverty ‐ it’s because, like those wars, the enemy was never just one monolithic opponent that one kind of “weapon” (and lots of it) could ever defeat. So it’s fitting that the facts may be more complicated than they seem in Ms. Rosenow’s anecdote – because that’s the case with everything related to cancer. One of the most interesting things about Mukherjee’s attempt to write a “biography” of cancer is how, when the literary framing is inadequate for describing cancer, it serves only to more fully illuminate the scope of this war.

  

NYT: Radiation (IMRT) horror stories; Woman has massive hole burned in chest because several doctors and physicists didn’t know “in” from “out”

Graphic: New York Times

Yet another case study on how the most educated of our professionals are not fail-safe. Not just not-fail-safe, but not not-able-to-tell-up-from-down-safe. The New York Times has an incredible story today, apparently one of many, into the dangers of new radiation treatment called Intensity Modulated Radiation Therapy.

It covers a lot of ground, but one anecdote that sticks out is of Alexandra Jn-Charles, who underwent IMRT to treat breast cancer. IMRT involves delivering radiation as a precise beam to kill a tumor…a great way to avoid the healthy-cell-killing symptoms of traditional radiation treatment.

However, Ms. Jn-Charles ended up with a hole in her chest so big that “you could just see my ribs in there.”

How did it happen? Numerous therapists, and even physicists, failed to notice a simple binary error:

One therapist mistakenly programmed the computer for “wedge out” rather than “wedge in,” as the plan required. Another therapist failed to catch the error. And the physics staff repeatedly failed to notice it during their weekly checks of treatment records.

Even worse, therapists failed to notice that during treatment, their computer screen clearly showed that the wedge was missing. Only weeks earlier, state health officials had sent a notice, reminding hospitals that therapists “must closely monitor” their computer screens.

…

The series of moronic, tragic errors calls to mind Atul Gawande’s story of the checklist, in which a 5-step list of tasks for doctors, as simple as washing their hands, reduced infection rate for a certain procedure to zero.

What’s the checklist for this cutting-edge radiation therapy?

Maybe there would be one if hospitals weren’t underreporting their accidents, according to NYC’s health department, by “several orders of magnitude.” (According to the NYT, the department apparently did not realize this until the Times started asking).

And then there’s the bad software angle. Varian Medical Systems gets criticized for code that, while allowing for the delivery of a precise and powerful stream of electrons to a tumor, has the stability and error-recovery ability of Windows ME. In the case of Mr. Jerome-Parks, an IMRT machine delivered radiation “from the base of his skull to his larynx” instead of just at the tumor. The reported problem: crash-prone software with poor/non-existent data recovery:

The investigation into what happened to Mr. Jerome-Parks quickly turned to the Varian software that powered the linear accelerator.

The software required that three essential programming instructions be saved in sequence: first, the quantity or dose of radiation in the beam; then a digital image of the treatment area; and finally, instructions that guide the multileaf collimator.

When the computer kept crashing, Ms. Kalach, the medical physicist, did not realize that her instructions for the collimator had not been saved, state records show. She proceeded as though the problem had been fixed.

“We were just stunned that a company could make technology that could administer that amount of radiation — that extreme amount of radiation — without some fail-safe mechanism,” said Ms. Weir-Bryan, Ms. Jerome-Parks’s friend from Toronto. “It’s always something we keep harkening back to: How could this happen? What accountability do these companies have to create something safe?”

Just incredible. Read the whole story here.

Also, a great animated graphic illustrating how IMRT can go awry.

My blog headline says “doctors” when it was “therapists” who apparently missed the “out” and “in” difference 27 times…though, presumably, doctors are involved somewhere in the operational process, even if they aren’t programming the machine themselves.

A NYT reader who says he’s an engineer has this insight:

What did Wedge in / Wedge out really imply to the software programmer? Did he understand the true consequences of the two setting options? Did he have any understanding of medicine at all? Or was his knowledge just limited to what the lines of software code could do?

This person might previously have written software for operating a sprinkler in a garden, where he provided options for turning the sprinkler on and off. Thus, a line of software code could manage Sprinkler On / Sprinkler Off. A similar line of code could also manage Wedge In / Wedge Out. The software is not really all that different; very often, all it does is activate/deactivate one or another relay. But what were the relative levels of importance of the selected options in these two cases? Sprinkler Off would mean the lawn didn’t get watered on one day. No big deal, and easily fixed. What about Wedge Out? Did he know what that could mean for the patient, and how many checks and verifications he would need to include for that in order to take into account situations like the operators of the equipment being mentally distracted, careless, etc.? Should he make lights to flash; warning sounds to be emitted; additional confirmational prompts and checklists each time? To make the system 100% foolproof, would the operator in this case require additional reminders / actions to be taken, which might not be required in the case of the gardener?

I think, now that technology is here to stay and since we are growing increasingly dependent on it, that every person in the chain, including electricians, mechanics, software programmers and others, need to become more medically aware of the implications of his/her particular role in the chain. They should no longer be distanced from the ultimate outcome as they are now, focussed on local actions and completion of job targets.

For instance, this programmer must be made aware that he is setting the radiation scope that could destroy a person. He must think deeply about practical issues and about how to take things like human error into account. He should not get away with just thinking he has met his daily target for number of lines of code written.

I usually don’t use the word “paradigm”, but I think what we need here is a major paradigm shift regarding what we should expect from technology and its providers in medicine. The old saying, “A chain is only as strong as its weakest link”, applies very strongly here.

  

China: Science, and “Avatar”

A couple of interrelated China articles on today’s NYT.com:

The first is a discussion on its “Room for Debate” blog on whether China will become a leader in science. The first writer, Gordon G. Chang, is a harsh skeptic:

China’s one-party state cannot produce world-class historians, economists, political thinkers or even demographers. Beijing’s increasing demand for obedience smothers creativity in many of the social sciences and “soft” disciplines.

Meanwhile, in the World section, there’s an article titled China to Pull Back ‘Avatar’ for Domestic Film .

“Avatar,” the Hollywood blockbuster that has proven wildly popular with Chinese moviegoers, will be pulled in the next few days from the majority of Chinese theaters where it is showing, Chinese media outlets reported Tuesday.

The film, which can be viewed in standard format or in 3-D, will be yanked from theaters without 3-D technology in order to make way for a domestically produced biography of Confucius, according to reports in state-controlled media that mainly quote theater operators.

“Avatar” seemed like the one feature that could overcome the alleged depressing effect that China’s piracy has on ticket sales. Personally, I can’t imagine “Avatar” being worthwhile at all except for seeing it in 3D on the big screen. Chinese culture bureaucrats apparently don’t think a movie about one of their country’s greatest philosophers can attract more yuan than a movie about half-naked blue people. They’re probably right; a movie featuring George Washington traveling forward in time to kill Hitler probably would draw less American viewers than “Avatar.” But let the people decide, and let the moviemakers be pushed to innovate (a 2009 foreign language movie about Brad Pitt launching an operation to kill Hitler didn’t do too shabby, thanks to a ballsy director).

Science is a different field than art, but it’s hard to believe that the heavy-handed mindset that quashes innovation in one field won’t hesitate to do it in the other.