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Social media reacts to “Emperor of All Maladies” – Ripples of conversation flow from it

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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.

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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.

Used with permission from Symplur

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:

As #cancer patient, I’m encouraged to see so many people watching #CancerFilm and realizing the value of clinical trials.

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:

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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Comments (25)

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Cathy Hood, RN, MS

April 1, 2015 at 8:49 am

I see a great deal of progress in the diagnosis and treatment of cancer and wonder who seriously seeking the underlying causes and means preventing cancer. Yet, I realize that real prevention would do nothing to support our $200 billion cancer industry and would hold industry – our culture and economy and job creators – accountable for their behavior. Cancer was rare when I was in nursing school, but today I see it in many friends and family members. Where is the documentary that looks for who is killing us?

    Kevin Black

    April 1, 2015 at 1:25 pm

    We were wondering the same thing as Cathy Hood, above. Part 2 of the series touched upon prevention in a passing moment. The financial motivations on the medical community in high dose chemo and the path that took patients had more play. Perhaps in Part 3 they will touch upon any learnings surrounding epigenetics and how we can play a role in our genetic expression via lifestyle changes.
    Dr Deanna Attai is a wonderful, integrative breast surgeon and very active in the community of breast cancer patients. She is a thoughtful and caring surgeon with eyes wide open. We love her work and support her efforts.
    Thanks for the great conversation.

    Tazia K. Stagg

    April 1, 2015 at 6:27 pm

    I’m board-certified in Public Health and General Preventive Medicine. The university I went to for college and medical school has a public radio station and an NCI-designated cancer hospital on its campus. The mission of the hospital is “to contribute to the prevention and cure of cancer.” Its current marketing tagline is “Your Best Chance For Beating Cancer.”

    Six weeks ago, I emailed the hospital’s CEO (copied the founder and the marketing director) to ask why he thought it was okay to use the inaccurate slogan. The marketing director replied with “I would love the opportunity to talk with you about this,” and instructed me to call him.

    Then I found billboards around my neighborhood advertising a health fair–presented by the cancer hospital–to be held on campus for poor minorities (my neighbors). Five weeks ago, I emailed the marketing director to attempt to prevent the inappropriate testing announced on the event website. Instead of answering, he replied with, “I am more than happy to answer any questions that you have.” and “I am happy to speak with you about this.”

    I decided to intervene on the event, which appears to have been designed and organized by the marketing department of the cancer hospital. In one of the prostate cancer screening workshops, I requested a microphone during the Q&A session. I asked the non-clinician who had delivered the inadequate presentation in English to tell us about his qualifications and conflicts of interest. (He hilariously answered “I work at [cancer center] and I have no conflicts of interest.”) Then I pointed out that screening experts recommend against prostate cancer screening, and asked the non-clinician to tell us about the likelihood that a man who accepted these tests would experience benefit or harm (because this hadn’t been included in the non-clinician’s presentation). This, too, was foreign to him.

    (At the conclusion of the workshop, as the poor men were rushing out of the auditorium to claim their tickets to free net-harmful tests, he approached me privately, asked me if I had questions for him, didn’t answer my questions, and recommended that I “never do that again.” He also instructed me to “Be careful.”)

    This past weekend, I attended a town hall meeting (Ken Burns documentary screening, radio program taping/panel discussion, public Q&A session) at the hospital. A non-clinician on the panel twice recommended prostate cancer screening.

    I wasn’t selected to ask a question, so I later emailed my question to the hospital CEO (copied the founder, others, of course not the marketing director): “I attended this morning’s promotional event and would like to understand the following. Considering the position of the word “prevention” in [cancer hospital’s] mission statement: Is there now, or has there ever been, a preventive medicine specialist among [cancer hospital’s] leadership or on its staff? If not, why not?

    The marketing director sent a reply. Guess what he wrote!

      Spring Texan

      April 2, 2015 at 10:08 am

      Good for you for showing up at the prostate screening event. I wouldn’t have the guts but you are so right and this is so bad.

      Tazia K. Stagg

      April 2, 2015 at 4:29 pm

      Thank you. This wasn’t even June! Or September. Or Movember. ;)
      I can’t recommend it as a way to spend a Saturday morning to anyone but a journalist.

Zuzanna Moore

April 1, 2015 at 9:03 am

Before we will pat ourselves on the backs for “how far we’ve come” Dr. Attai and compere the progress of last thirty years to what medicine was doing in past centuries we need to realize that we have technology and science behind us not available in the past. I believe, if we factor in relatively recent progress made in technology/science we really have not made that much progress in how we treat cancer patients. It easy to get excited about new developments and possibilities but the clinical reality is still very sad. Let’s not forget about prognosis for patients with metastatic breast cancer…three years?

Molly Lindquist

April 1, 2015 at 10:01 am

My grandmother died from breast cancer in the 1950’s. Family members described to me the visits they had with my grandmother at the nursing home where she lived out the end of her life. After her radical mastectomy, testosterone treatments distorted her face. She had large amounts of facial hair. One eye remained permanently closed while the other remained wide open. At one point, every one of her ribs was broken, leaving her unable to sit up in bed. You can imagine my gratitude about my own experience with breast cancer in 2011 after hearing my grandma’s story. But my deepest hope is that my own two daughters, who were 3 and 5 years old when I was diagnosed, will look back on my experience and feel grateful and relieved that they don’t have to worry about breast cancer. Will we get there? I’m so hopeful, but as this movie shows, we have a long way to go!

Pamela Rutter

April 1, 2015 at 11:33 am

I have seen the frustration of a cancer researcher from the inside. My husband received his PhD from Vanderbilt in the 70’s, did a post doc at U of Minnesota, then was appointed to a faculty position at U of Colorado. He left the field in frustration in the 80’s due to the politics of competition for grant funding. But he had seen something in his work that he could not let go, and in the 90’s started an exhaustive review of the literature to get back up to date. He developed a model of the cell cycle which reveals a difference in cancer cell and normal cell cycle metabolism that can be exploited to kill just the cancer cells. And this Achilles Heel, as he calls it, of cancer cells is far enough upstream in the cell cycle that he believes a cancer cell cannot mutate around it. He went back into the lab in 2005 and did proof of concept experiments in vitro which were successful. But he is no longer at the University (his funding ran out, again), and he is in the process if writing a paper to make his information public so that hopefully someone will follow up on it. But I am pessimistic. I know many researchers would like to find a “cure” or an inexpensive “treatment” that could make cancer manageable as a chronic disease. But I don’t think any major drug company will see the benefit to their shareholders in this and so they won’t pursue it.

    Spring Texan

    April 2, 2015 at 10:24 am

    That is an interesting, but very discouraging, story. Thanks all the same for an inside look.

Judith Stavriotis

April 1, 2015 at 12:24 pm

I am a breast cancer patient (4 years since surgery). I really think the medical community needs to be more upfront with patients. You may be “cured” a word the doctors never use, but you will not get your life back. You will get some other life back. The changes are very significant and you are left to struggle with them alone. Also, the side effects of the anti estrogen drugs, which are the first line of treatment are very severe for many people. No effort was made by my doctors to alleviate those side effects. I actually think they don’t know how to. Cancer teaches you how much medicine doesn’t know and that you are just a guinea pig in their eyes.

    SANDY OESTREICH ARNP

    April 4, 2015 at 2:22 pm

    We’ve just had the similar experience. Our daughter has just died after a year of merciless Cysplatin etc and radiation that left her kidneys very damaged and left her vomiting for 7 straight months. As a scientist and credentialed nurse practitioner on her way to a doctorate, early on I did a search on her Stage III or IV endometrial cancer to try to get some insight into projected treatment.

    I did a meta-analysis of 21 research studies. In summarizing them I got a strong sense that what drove the summaries was mostly ambitious ego urging that each study held The Answer and that objective reports were not very objective. Only one researcher was honest in reporting, “There is no cure.”

    It was markedly noticeable that side effects, if reported at all!, were strictly marginalized and ,”we were easily able to treat any neutropenia, (etc.) ”

    Our quite intelligent daughter nor her husband were able to get a drop of information about her progress nor status through the 11 months before she died, and went to a newly-assigned oncologist who told her frankly,”We’ve done all we can for you.” Period. No oncologist explained nor informed; she was just urged to continue the merciless chemo.

    The first thing I noted during my own analysis, which I shared with our daughter, was that most of the studies had been published in the early to mid-2000s; only one or two later in that decade. And this was 2014! None had anything very new to report; all researchers just reported on pretty much the same experiments. Hardly a “new and exciting field of research”.

    So, it was easy for us to believe that she was dosed per the same old old protocols, her terrible tribulations did not seem to impinge upon oncologists’ treatment. [Her radiologist was The One who indicated that he viewed her as a person.] It may be possible that, as studies now show, that oncologists by and large are far too busy to focus on patients’ real needs and may not have ever been coached to overlook their own ego and insecurity and pecuniary interests in order actually engage in each patient’ life and the impact that this sort of experimentation on a person damages their focus and interpersonal interactions. This may have dangerous effects upon oncologists, as I read about their suicide rates.

    Our family has firmly decided we will never allow such blind, careless experimentation upon ourselves and will find a kinder, gentler way. And we shall.

Betty Hom

April 1, 2015 at 2:25 pm

I also believe the oncologists never use the word cured, because of the use of chemotherapy drugs, it is a mixed bag of whether it works or not at the multiple side effects that is severe and no real effort is made to alleviate those side effects other than more drugs that also have side effects. The drug industry funds those chemotherapy clinical studies. Your quality of life suffers as a result of chemotherapy and also affects those with other chronic conditions such as diabetes or heart conditions in an adverse way. I can speak as I am going through this myself as someone who had TCC in kidney pelvis and it is a rare cancer and very few clinical trials are available as the money isn’t there to have on going studies and not enough profit for the chemotherapy drugs. The first line of defense is surgery and if caught early enough, then the chemo. is not as necessary.

Warren Celli

April 1, 2015 at 4:03 pm

System apologist, corporate tool, and deflection spinmeister Ken Burns has out done himself with just the bogus title on this one. The ’emperor’ of all maladies is the psychopathy of Xtrevilism that causes the environment to be so polluted that it causes so many cancers in so many of us.

If you want to cure cancer you first have to eradicate Xtrevilism.

Deception is the strongest political force on the planet.

    Carole Yorke

    April 1, 2015 at 10:33 pm

    Please note that the title “Emperor of all Maladies” is Mukarjees’
    book title, not Burns’

      Warren Celli

      April 2, 2015 at 7:28 am

      Please note that Ken Burns is the executive producer.

      Deception is the strongest political force on the planet.

    Erica

    April 4, 2015 at 10:14 pm

    Please note cancer is called the emperor of all maladies. Long long before the book.

Ellen Kuwana

April 1, 2015 at 6:25 pm

As Pamela Rutter said, advances to cancer treatment, diagnosis and treatment won’t advance without FUNDING support for both applied and basic research.
Basic research, for those not familiar with the term, is exploring how cells or other processes work to shed light on how and why these processes go wrong (e.g., in cancer and other diseases). Applied research seeks to answer a specific question. Both have value and contribute to general knowledge. Researchers spend an inordinate amount of time writing and applying for funding–and have to do research to have preliminary results in order to get funding. It is super competitive. We need more public support for basic and applied/clinical research and for our government to have enough money set aside for medical research that more researchers can get funding.

Ed

April 2, 2015 at 2:42 pm

After watching the 3 part series on Cancer, I related it to a movie I saw with Geroge Clooney one time, actually here is the clip that reminds me of Cancer. Humans on the boat and trying to get free, Cancer as mother nature

https://www.youtube.com/watch?v=W9Tdw5nG4dQ

Will we ever beat Cancer? Maybe like MJ you cant beat it only hope to contain it.

Susan

April 3, 2015 at 6:42 am

Thank you to the clinicians for your gut punching, crystal clear description of the world of cancer treatment. I’m a non-clinician who has watched countless family and friends suffer needlessly, having worked within the cancer treatment industry for 10 years. It is so true this is such a money oriented industry that many physicians do NOT care about the patients only about how much money each patient will bring in Medicare and other insurance reimbursements. I visualize and hope for the day when humans figure out they can heal themselves with the power of their own mind.

Mighty Casey

April 3, 2015 at 8:54 am

Dr. Attai (full disclosure: she’s a personal friend) is right to say we’ve come a long way, baby, at least in the context of ending societal stigma of people with cancer, and in creating treatments that can contain the disease, if not end it.

But, and however, I too wonder, like Cathy Hood above, if we as a species (particularly sub-species homo sapiens americanus) aren’t more wired to make money off the stuff that makes us sick and the treatment for it. In other words, given the big bucks in Cancer Incorporated, where’s the real fire to reduce its occurrence?

I DVRed the whole enchilada, and have only watched the first two hours. I do think that those two hours were heavy on “hero researchers” and light on what’s driven up occurrence rates. I’ll wait to see what unfolds in the next four hours to pass final judgement, but the irony that the 2nd ep is titled, “The Blind Men and the Elephant,” the very metaphor I use frequently in my own work on healthcare system transformation, is not lost on me.

I use the blind guys/elephant as an example of why insider efforts at shifting a complex system too often wind up delivering less than stellar results: blinded by the pillars (legs), the plow (trunk), the plow (tusk), the effort collapses into a fistfight over who’s got the right answer to the problem. In a complex system that spews cash like an ATM on crank, efforts at change will have to come from outside, I think. The insiders have too much at stake in preserving the status quo.

sally james

April 3, 2015 at 2:04 pm

Hello,
Just want to say special thanks for all these comments. Keep talking about #cancerfilm. Here is a story you may like where a critic of the film explains why he thinks the bald money-grubbing side was not in the film.
http://www.bloomberg.com/news/articles/2015-04-03/the-three-things-ken-burns-gets-wrong-about-cancer

Ted Smith

April 3, 2015 at 5:21 pm

I’ve been an avid fan of Ken Burns ever since his PBS Civil War saga, so I was eager to see his take on cancer.
I’ve also been an advocate for a safe environment and healthy families for even longer. While I was glad to see such an important focus on cancer, I was very disappointed to see that the emphasis was so disproportionately focused on “finding the cure” for cancer with very little focus on preventing environmental causes of cancer.
Even when the program did focus on prevention, it was mostly on tobacco, and the impact of industrial chemicals on the life and health of people around the world was ignored.

Many of us have been fighting for decades to eliminate toxic hazards and to promote safe chemicals, and to protect families from exposure to carcinogens on the job and in our communities, yet this work was completely missing from the series – the only mention of workplace related carcinogens was on asbestos, a naturally occurring mineral with no mention whatsoever of man-made chemicals, not even benzene – and no mention of the current very important fight going on in Congress right now to reform the Toxic Substances Control Act (TSCA) to encourage the production of safer chemicals. Having recently seen another movie called “The merchants of doubt” which documents how the tobacco industry and the chemical industry have spend huge amounts of money over the years to lie to and to confuse the public and delay accountability through better regulation, my suspicions were raised.
When I saw the list of sponsors at the end of the program, a light bulb went off – it was no wonder that industrial chemicals were ignored when we saw that David Koch (of the infamous Koch Brothers,) was a sponsor, along with Genentech, Bristol-Meyers Squibb, etc. Koch makes his $$ by producing toxic chemicals (and denying their impact on climate change and the environment) and Genentech and Bristol Myers make their $ by making pharmaceutical chemicals to “cure” cancer, so the economics once again explains the framing of the problem. I don’t know if Ken Burns is responsible for this imbalance in perspective, but I’m sure disappointed that his name is on it.

Fred Linkton

April 5, 2015 at 2:48 pm

Movie shows how cancer treatment has become the main money-maker for the medical establishment. People empty their wallets and mortgage their whole lives to save themselves and their children, yet the medical progress has been virtually nonexistent. Current genetic “treatments” continue to fail en mass and provide no clue going forward. The War on Cancer is an embarrassment and a moral failure as thousands of patients are doomed to fall under the control of doctors performing Nazi-like experiments (yes, it is that bad).

Marie

April 7, 2015 at 11:38 am

I loved the book and Ken Burns’ documentary! I had a new type of bone marrow transplant five years ago and have been cancer free since then. My rather ordinary insurance covered almost every thing -chemo, radiation, uncommon drugs and weeks of hospitalization. The progress in bone marrow transplants has been amazing over the last 30 years and I am incredibly grateful. I have totally resumed a full, active life.

Bonnie Howard

April 10, 2015 at 4:26 pm

The whole documentary didn’t even touch on the CAUSE, the true ignored CAUSE of cancer. Our nation’s grotesque use of the drug sugar is the CAUSE of diabetes, heart disease and of course is the fuel for cancer tumors. This fascinating documentary completely ignored the elephant in the room. Even feeding sugar crap to the child receiving chemo drugs in her hospital bed. Celebrating with cupcakes. Geez people. Then at the end we learn who produced the event. Drug makers and researchers.
We don’t need more profitable drugs and research, we need common sense.