Michael Joyce produces multimedia at HealthNewsReview.org and tweets as @mlmjoyce
Model Elizabeth Hurley recently passed out pink ribbons on a transatlantic flight.
Firefighters, football players, and even people’s dogs are donning the pink …
… all in support of Breast Cancer Awareness Month which kicked off this past weekend. It’s been going on for over 30 years and has become as much a part of October as Halloween. Some even call it ‘Pinktober.’
But through the years critics have gradually begun to point out that much of what news outlets produce each October is not news. It’s become more a perennial expectation to directly or indirectly encourage ‘early detection’ of breast cancer (like here, here, and here). Very little of this coverage ever mentions current evidence-based recommendations on who does — or doesn’t — benefit from screening.
I’m calling these contrasting perspectives, for illustrative purposes, the Pink and the UnPink messages.
(It’s a device only. A way of establishing a spectrum of opinions and behaviors, not stereotype or pit well-intentioned people against each other. You’ll see why below).
The Pink Message is clear: ‘early detection of breast cancer saves lives’ … and promoting this notion has morphed into a form of cheerleading that has become the default for many politicians, celebrities, advocacy groups, and even some journalists.
There’s some truth to this narrative. Evidence does show that some deaths from breast cancer can be averted through screening. The Pink Message trumpets this relatively modest benefit and typically downplays or ignores potential harms and uncertainties, which are considerable. It’s estimated that between 20 and 50 percent of women over age 40, who are screened annually with a mammogram, experience at least one false alarm that leads to a breast biopsy.
Others will be treated unnecessarily, possibly with surgery or toxic chemotherapy, for a cancer that never would have caused them harm.
The UnPink Message, on the other hand, has not been widely embraced, is supported by many academics but few (if any) celebrities, has no discernible political backing, employs no brand or slogan that I’m aware of, and says this: promoting the injudicious use of breast cancer screening can lead to physical, financial, and emotional harms. The decision to get screened is a very personal one and women should consider it carefully before taking any action.
That the Pink message drowns out the UnPink message may not be surprising. But how this keeps happening is revealing. In many ways it says more about us, and how we communicate and feel about cancer, than it does about breast cancer screening itself.
“I think the early detection mantra offers simple clarity, but reality involves a lot of messy uncertainty,” says Steven Woloshin, MD, Professor of Medicine at the Dartmouth Institute for Health Policy and Clinical Practice and author of Know Your Chances, a book about understanding medical risks.
“A small number of people get a big benefit from screening – but many others only experience harms such as false positives and over-diagnosis. Critiquing what you call the ‘pink movement’ is not always welcome. It flies in the face of years of persuasive messages trying to convince women to get screened. The early detection argument is so intuitively obvious that it is hard to accept that intuition is an unreliable guide when it comes to screening. Screening skeptics are often seen as trying to take away something that is undeniably good, when in fact they are trying to encourage and empower women so they can make an informed decision that’s right for them.”
Woloshin knows the Pink vs. UnPink issue intimately. Five years ago he co-authored an opinion piece in The BMJ in which he took the PR tactics of one of the largest and best funded Pink campaigners in the US — the Susan G. Komen Breast Cancer Foundation — to task. He explains how their using 5-year survival rates to argue that ‘early detection saves lives’ is a manipulative, statistical trick that inflates survival benefits.
His explanation puts it more clearly than I can but, suffice to say, it boils down to Pink advocates arguing that mammography improves 5-year survival from “23% to 98%” while UnPink researchers point out the actual benefit is “a reduction in the chance that a women in her 50’s will die from cancer over the next 10 years from 0.53% to 0.46% … a difference of 0.07 percentage points.”
It’s an important distinction and we’ve raised it before.
“It’s very difficult for doctors to explain these statistics to a patient in a 15-20 minute visit,” says Ranit Mishori MD, a Professor of Family Medicine at Georgetown University School of Medicine. She thinks there’s another roadblock for getting people to understand the UnPink message: the language of cancer.
“There’s an entrenched narrative of doom-and-gloom with cancer that speaks to people and promotes the ‘catch-cancer-early’ approach. We all know someone who’s been affected by cancer and we’ve all heard the line: ‘if only they had caught it earlier.’
People hear the word cancer and automatically think ‘let’s remove it and be done’ without even hearing if their doctor advises that this is a slow-growing cancer — or non-cancer — that won’t spread or do harm. They just hear ‘cancer.’ I think we need to change the enormous connotation of that word and put it in context for people.”
Such distinctions are especially relevant to conversations about ductal carcinoma in situ, (or, ‘DCIS’) sometimes referred to as “stage 0 breast cancer.”
In other words, non-intuitive statistics and a language barrier of sorts are handcuffing the UnPink message. It’s just not getting through.
Last week, survey results were published which looked at women’s awareness and attitudes about over-diagnosis and over-treatment of breast cancer. Drs. Sarah Gollust and Rebekah Nagler — of the University of Minnesota’s School of Public Health and School of Journalism, respectively — found the following:
Rebekah Nagler actually specializes in understanding how messages about cancer and cancer screening are perceived by the public. She’s a good person to ask regarding why the UnPink message might not be heard. “It’s much more complicated than it looks,” says Nagler. But she thinks two factors are important to bear in mind.
“First, I think it could be as simple as exposure. We’ve been bombarded with the Pink message. Many more people have been exposed to that than the nuances of the UnPink message. So this results in an imbalance in coverage. Second, I think it also boils down to a very personal choice, and that has a lot to do with something else quite personal: risk tolerance. We’re often dealing with very individual differences in risk tolerance.”
Nagler is quite right to bring up individual differences and individual choice. Even if two women are given the exact same scenario from their doctors, it’s important to point out there is no ‘right choice’. It’s their choice. Ideally, made collaboratively with up-to-date information from their doctor.
And it’s encouraging to see more groups that not only acknowledge this, but also challenge ‘pink-washing.’ One outspoken leader for the past 15 years has been the Breast Cancer Action, and their ‘Think Before You Pink’ initiative. We have written about their work before. It’s worth checking out their screening guide and anti-pinkwashing campaign.
There’s also been some thoughtful reporting through the years that is well worth revisiting:
A Growing Disenchantment with October ‘Pinkification’ ~ by Gina Kolata, New York Times
Ours is a culture susceptible to marketing. Colors, slogans, and clichés can mainline to our brains … sometimes with information, but too often with misinformation.
Breast cancer doesn’t need a color. Nor a catchy slogan. Or ribbons of fabric.
Breast cancer needs patients and doctors working together to make informed choices with the best information available.
That’s medicine. Not marketing.
Addendum (10/10/2017): One of the people I frequently count on for her thoughtful commentary on issues related to breast cancer is UCLA breast surgeon, Deanna Attai, MD. She’s a very busy person and was unable to send me her insights prior to publishing the above blog. But she did eventually catch up with me and sent the following replies to my questions:
What is it about the over-diagnosis/over-treatment message that is not being listened to? Or, understood?
“It’s very difficult for people to understand the concept of over-diagnosis. Patients/the public still — for the most part — feel that any ‘cancer’ is aggressive and rapidly growing, and needs to be addressed as soon as possible. I have many patients with small, low grade stage I cancers who say ‘but it’s invasive, how can you say it’s not aggressive?’ That’s a disconnect that is not easy to overcome. More education on the natural history and variability of cancer is needed. And unfortunately, some of the urgency to act is coming from the patient’s primary care physicians – I still have patients tell me that their primary doctor said it was important to have surgery ‘right away’.”
Why, when the UnPink message is brought up, is it considered insensitive to those who are either concerned about breast cancer, or have survived it?
“Many patients truly believe that the mammogram saved their life – and of course, in some cases, it certainly did. But also realize that on some level if you’re speaking with a patient who went through surgery, chemo and radiation — and now you are saying ‘you didn’t have to do any of that’ (and, of course, you don’t know that with 100% certainty) – how would that sound to the patient? I think that’s where the insensitivity comes from.”
There’s something here about risk/fear … or about taking action vs. not taking action … that needs to be articulated with regard to human behavior. But what is it?
“Sitting by passively when faced with a potential life threatening situation is just not something we are programmed to do! And there is the ‘certainty factor’ – no matter how indolent a breast cancer may be, I cannot tell a woman with 100% certainty that observation (or “active surveillance” as it is described in the DCIS COMET study) is truly ‘OK’. It is a ‘reasonable option’ … but patients don’t want reasonable options – they want certainty. And so treatment, even over-treatment, sometimes sits better with patients than monitoring.”