The following is a guest blog post from one of our contributors, Sally James of Seattle, an active observer of, and participant in, health/medicine/science-related social media. She tweets as @jamesian.
People are talking about the cancer film, “Emperor of Maladies,” produced by Ken Burns for the Public Broadcasting System, PBS. The three part series began Monday and will end tonight (Wednesday April 1). They are doing their talking around coffee pots and water coolers, even in some surgery suites, but also on social media platforms. Will the ripples of that conversation slowly running out from this week change public understanding?
Some doctors hope so. One of them is breast surgeon Deanna Attai, who is a professor at UCLA and has a practice in Burbank, Calif. She posted tweets during the nightly “live” event organized by the National Cancer Institute, NCI. Her comments were part of roughly 17,000 posts by the end of that first night on the social media platform Twitter. If you want to see those, the website Symplur is providing metrics that show the current numbers and top 10 “influencers” at this link. Attai, who is also joining the HealthNewsReview.org editorial team, wrote in an email that she wanted the film to get across “how far we’ve come.” She also believes that many people still see cancer as uniformly fatal, when that is no longer the reality.
In a strange parallel to the sort of sports banter that goes on during a March madness basketball game, people from Minnesota to Maine posted about the children with leukemia portrayed during the first episode, “Magic Bullets.” They wrote “poor Robert” during a historic section about the first child to receive chemotherapy in the 1940s, or poor Luca about a modern-era patient. They cheered and booed and shared when something on screen reminded them of a dead relative’s similar case. Some posted that they were turning away because the depictions of hospital beds and failures were too traumatizing. Doctors and nurses did a parallel kind of cheering for research heroes and family courage.
Meanwhile, institutions such as Columbia Medicine and Sloan-Kettering and others, posted links related to their own research. The author of the book that inspired the film is Siddhartha Mukherjee who works at Columbia. They tweeted links to their own “precision medicine” efforts.
But in the film’s depiction of historic early cancer treatment failures, perhaps one of the most poignant reminders that could linger is we always believe in magic bullets, but as Forbes reporter Matthew Herper wrote about the documentary: “they have never been magic enough.” Herper wrote that he hopes the film imbues people with more context and skepticism. Even the newest bullets, such as immunotherapies filling news reports, may very well require years of refinement to be magic enough for a majority of patients. A noted leader in oncology, posting on twitter, expressed much the same sentiment on Monday evening.
Alok Khorana is the director of the GI Malignancies program at the Cleveland Clinic, and the chair-elect of the giant American Society of Clinical Oncology or ASCO. In his tweet, if you don’t know the abbreviations, “rad/surg” means radiation/surgery. To its credit, the film depicts many dashed hopes and failures. The first night also showed the backroom dealing and politics of raising money and changing public perceptions.
Attai echoed some of the same combination of measured optimism and a hope that people come away with a nuanced view of cancer’s challenge.
“People don’t realize just how far we have to go – the more we learn, the more we realize how much we still don’t know. We’ve gotten to the point to be able to identify many of the complex molecular pathways, only to be surprised that when we find a drug that can block a pathway or mutation, cancer cells figure out how to bypass that block,” she wrote.
There will be thousands of messages to parse and analyze in the weeks and months following the film’s airing. Dozens of individual television stations, such as Seattle’s KCTS-9, reported stories for their own website to dovetail with themes from the documentary. They held a preview event attended by an estimated 400 people at the city’s Town Hall. PBS invited viewers to post stories at a “story wall” online.
Let’s give the last word to a patient, who is herself an advocate on the topic of lung cancer. Janet Freeman-Daily is currently NED (no evidence of disease) and is participating in a clinical trial based on the particular genetic signature of her lung cancer. She posted this Monday evening:
Note – Tomorrow (April 2) from 1-2 p.m. ET there is a live chat on twitter about immunotherapy led by the NCI.
Addendum on April 2: Journalist Paul Raeburn tweeted:
#CancerFilm stream full of institutions trying to reap some PR benefits from the documentary. Embarrassing.
— Paul Raeburn (@praeburn) March 31, 2015
Addendum on April 4: I’ve been saving this and forgot to post it. Long before the program aired, way back on February 9, Katherine O’Brien, diagnosed with metastatic breast cancer in 2009 at age 43, wrote on her IHateBreastCancer blog, “CANCER GETS THE KEN BURNS’ TREATMENT ON PBS (AND WHY I WON’T BE WATCHING IT).”
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