Social Media and Breast Cancer: A Call for Greater Diversity

February 3, 2014
Barbra's legacy is The Pinkwellchick Foundation.

Barbra’s legacy is The Pinkwellchick Foundation.

The embers are still glowing from the social media firestorm Emma and Bill Keller ignited over the past few weeks. The husband-and-wife journalists each wrote articles about Lisa Bonchek Adams, a young mom diagnosed with metastatic breast cancer in 2012.

Emma Keller, writing online for the Guardian, questioned Adams’ use of social media to publicly chronicle her cancer treatment. (The piece was subsequently withdrawn.)  Bill Keller’s NYT Op-Ed ran less than a week later and essentially portrayed Adams as a dying woman grasping at straws, suggesting her treatment equates to “endless ‘heroic measures’ that may or may not prolong life but assure the final days are clamorous, tense and painful.”

The Kellers obviously don’t understand metastatic breast cancer. The average metastatic breast cancer patient may receive eight or 10 different treatment regimens in sequence. Contrary to the Kellers’ representations, Adams isn’t on her deathbed. What Bill Keller describes as “heroic measures” are what the 155,000 of us with metastatic breast cancer would call “business as usual.”

The Keller/Adams controversy generated a lot of attention and traffic for all involved. But if it shows us the power of social media it also exposes some gaping deficiencies. A cursory look at those blogging, tweeting or otherwise commenting on this issue and metastatic breast cancer in general reveals a distinct absence of diversity.

Among the hundreds of breast cancer blogs, only about 25 or so that we know of feature people with metastatic disease. If there are African American patients blogging about their metastatic breast cancer their voices remain largely in the background. Barbra-Watson Riley one of the very few bloggers, died in November 2013. (The Pinkwellchick Foundation will continue Barbra’s work.)  Outside of the US, we know of a black British woman’s blog, “Afro Chemo.”

And yet, according to a 2012 Pew Internet Research Study, more than one quarter of online African-Americans (28%) use Twitter, with 13% doing so on a typical day. Major news outlets have recently done feature stories on BlackTwitter, “part cultural force, cudgel, entertainment and refuge,” according to the Washington Post.  So when it comes to breast cancer, shouldn’t there be more black social media voices? Shouldn’t we all be talking to each other? Are we missing opportunities to connect?

The Kellers, for all their fascination with Adams and metastatic breast cancer, had no comment on this December 20, 2013 New York Times story:

The cancer divide between black women and white women in the United States is as entrenched as it is startling. In the 1980s, breast cancer survival rates for the two were nearly identical. But since 1991, as improvements in screening and treatment came into use, the gap has widened, with no signs of abating. Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

According to NYT reporter Tara Parker-Pope, the gap in cancer survival cannot be explained away by biological differences in cancer between blacks and whites. While African-American women are at greater risk of a more aggressive form of cancer known as triple negative, those cancers account for only about 10 percent of diagnoses.

Carole Dickens is a nurse navigator with the CHN

Carole Dickens is a nurse navigator with the CHN

The New York Times article highlighted the work of The Congregational Health Network  (CHN) which builds upon the strong infrastructure of churches to reach deep into hard-to-reach and underserved communities. More than 400 congregations, including Baptist, Methodist, and Church of God in Christ, have signed up to be part of CHN, representing more than 15,000 patients. Eleven hospital employees, known as navigators, work with congregational volunteers, known as liaisons, to help congregation members make their way through the health-care system. The network offers weekly classes ranging from “Caring for the Dying” to “Mental Health First Aid.” More than 2,000 people have taken at least one class.

On the breast cancer front, Carole Dickens, a registered nurse and CHN navigator, visits congregations to present educational seminars and arrange mammograms and other screenings. This program is supported by Komen, the Avon Foundation and others.

A quick search reveals that people on Twitter are talking about CHN and its programs. This is a start–but we’ve all got to do more. Social media give us unprecedented communication power–but only if we use it proactively and creatively.

We desperately need more diversity in social media, especially when it comes to metastatic breast cancer.  We need to talk about why too many Americans continue to die from metastatic breast cancer before their time. We need to acknowledge that the black community is disproportionately represented. We need to make sure our efforts–online and in person–are inclusive. We need to do something now!

Bill Keller’s Misguided NYT OpEd Piece: MBCN Responds

January 13, 2014

BillKellerDear Editor, NYTimes:

Bill Keller’s op-ed piece on “Heroic Measures”  (January 12, 2014)  contains egregious factual errors. It also misrepresents what metastatic breast cancer is and how it is treated.

Whether you agree with Lisa Bonchek Adam’s decision to chart her cancer via social media, it’s always helpful to get the facts right.  While it is true that Adams was diagnosed with early stage cancer seven years ago, she has not been in a seven-year “public cage fight with death.”

When she was diagnosed with metastatic breast cancer (MBC) a little over a year ago, it was then that  her cancer became incurable–but still treatable—for now. For now, Adams is LIVING with metastatic breast cancer, as are 150,000 other US people. As Adams correctly told Keller, the course of the disease can involve many periods of relative stability, interspersed with serious complications and side effects. To live with MBC is to embrace uncertainty—you don’t know if a drug will work,  how long it  will work and how you will tolerate it. You just take it one day at a time. There is no wrong or right way to live with metastatic breast cancer–there is only the way that works best for YOU.

MBC, also known as Stage IV, is the most advanced form of breast cancer, where cancer has spread to distant organs. It is not an automatic death sentence, although it is true some will succumb quickly. With MBC, treatments focus on controlling–but not eliminating–the cancer while maintaining a good quality of life.  Some oncologists say that MBC is becoming a chronic disease, but with an average life expectancy of 2-3 years from the metastatic diagnosis, much work obviously remains to be done.

Keller compares his aged father’s cancer death to Adams’ situation, as if there were no difference between a 44-year-old woman with a family and a treatable disease and an older man at the end of his life. Yes, Adams is in crisis now, but she may emerge to a new level of stability–again, to live with MBC is to embrace uncertainty.

Just because we have a terminal diagnosis doesn’t mean we are going to pop off at any moment. Some patients with MBC do very well with the combination of standard treatment and palliative care and can live 5 or even 10 years past diagnosis. So, to quote Yosemite Sam, “Back off, ya varmint!”

Keller clearly does not understand clinical trials, either. We can thank patient participation in clinical trials for all new drugs—breast cancer and otherwise.  Doctors use clinical research studies to compare current treatments with potentially better ones.

Keller implied that Adams’ has one foot in the grave and one foot on a banana peel—and that a clinical trial was her last hope or that she was wrong to be an “eager research subject.” From what Adams has shared on line, she has more treatments left to try. We owe people like Adams a huge debt of gratitude for being in a clinical trial—and the very real need for more people to be in clinical trials would have made a far better Op-Ed.

Had Keller read Adams’ blog more closely, he would know she has always spoken out against the breast cancer warrior mentality and the destructive message of the pink breast cancer community that you are a failure if you are not a “survivor.” Also, any proactive metastatic breast cancer patient will have many conferences with his or her health care team.

If Keller had truly wanted to contribute a compelling Op-Ed on death and breast cancer, he should have called attention to “Tackling a Racial Gap in Breast Cancer Survival,” an article the Times published on December 20, 2013.

“Despite 20 years of pink ribbon awareness campaigns and numerous advances in medical treatment that have sharply improved survival rates for women with breast cancer in the United States, the vast majority of those gains have largely bypassed black women,” writes Tara Parker-Pope. “Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.”

Where is the outrage over THAT? This year, 40,000 people in the US will die from metastatic  breast cancer.  If this is the “inevitable fate” Keller references, we say no thank you!

For more information on metastatic breast cancer, please see

Please start by reviewing Dr. Don Dizon’s excellent talk,  “Living with MBC,” presented at MBCN’s 2013 conference:


The Metastatic Breast Cancer Network

Dr Don Dizon answering a question during his talk on Living with MBC.

Dr Don Dizon answering a question during his talk on Living with MBC.