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Why Is Talking About Metastatic Breast Cancer on Social Media So Outrageous?

By on January 22nd, 2014 Categories: News, The Breast Cancer Journey

Many visitors to Breastcancer.org know the writing of Lisa Bonchek Adams. She’s a woman in her 40s who was diagnosed with DCIS in 2006. After a bilateral mastectomy, pathologists found two small invasive breast cancer tumors in the removed tissue, so instead of DCIS, she actually had stage II invasive breast cancer. In December 2008, she had her fallopian tubes and ovaries removed. In October 2012, she learned that the breast cancer had metastasized to her bones. She blogs about living with metastatic cancer at lisabadams.com and tweets about it at @AdamsLisa.

Adams’s writing is a thoughtful and honest portrayal of what her life is like, giving everyone who hasn’t been diagnosed with metastatic cancer a glimpse into the daily joys, fears, hopes, and realities of living with stage IV disease. Much of the media coverage about breast cancer focuses on women who are considered “cured.” They were diagnosed, went through treatment, and are now thought to be disease-free. All of which is tremendous and inspiring. But there are thousands of women living with metastatic disease — some for 10 or more years — which is also tremendous and inspiring, but receives very little attention from the media or anyone else. So when someone like Adams decides to share her story, it’s important for everyone’s education that her voice be heard.

All of which made it shocking to read not one but two opinion pieces in early January that attacked Adams for sharing her story. On January 8, Emma G. Keller, a columnist for the Guardian and a cancer survivor herself, compared Adams’s writing to funeral selfies: “I couldn’t stop reading…but felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?”

Reaction to Emma Keller’s column was immediate and scathing — the blogosphere and Twitterverse exploded with criticism, as did the comments area at the end of the column. The piece has been taken down from the Guardian site, but you can read a cached copy.

One of the most thoughtful responses came from blogger Zeynep Tufekci:

Last week was a curious one. First, Guardian writer Emma G. Keller wrote a cancer-shaming article [archived here] on metastatic breast cancer sufferer Lisa Adams’ social media presence. It was an oddly callous piece—but that was not its only fault. Emma Keller admitted that she had conversed with the subject via email and DM on Twitter without telling her that she was doing a story about her, and quoted Lisa Adams’ private direct messages without as much of a notification, let alone a permission. Emma Keller’s piece also greatly misrepresented what was happening with Lisa Adams.

I knew the misrepresentation because I’d been following Lisa Adams and a few other metastatic cancer patients for the last year because I wanted to write a piece on how social media makes visible that which was previously less visible and more isolating—like terminal illness, or metastatic breast cancer, especially for those whose story does not fit into happy narratives of survivors showered in pink paraphernalia. The disease kills many, including those who do everything right, despite early detection; yet fairly little research funding goes to studying the disease in this last (so-called fourth) stage. People like Lisa Adams are serving an important role in challenging the dominant, pink-drenched ribbon of early detection, hardship, survival and happily-ever-long-after. So, I’d been following her for a while—which is why as soon as I read Emma G. Keller’s piece, I was struck by the level of the misunderstanding. It was as if Keller had not done her research.

On January 12, Emma Keller’s husband, former New York Times editor Bill Keller, wrote a column called Heroic Measures in the Times, essentially defending his wife’s viewpoint and chastising Adams for her treatment choices and wondering why she doesn’t choose the “humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”

Both columns have been called tone-deaf and judgmental, which they are in my opinion. But they’re also inaccurate. The Kellers go to great lengths to tell us over and over again that Lisa Adams is dying before our eyes, her death imminent. That’s she’s only being kept alive by extreme treatments that are out of reach for the average person diagnosed with cancer. Both of these points are false.

Yes, Adams enrolled in clinical trials, but her treatments are pretty much the standard of care for metastatic breast cancer. They’re not “extreme,” “heroic,” or “frantic medical trench warfare.”

As Katherine O’Brien, a member of the Breastcancer.org Stage IV and Metastatic Breast Cancer ONLY discussion board forum who has been living with metastatic disease for nearly 5 years and is a member of the Metastatic Breast Cancer Network Board, wrote:

When Adams 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.

As someone with MBC, Keller’s ignorance of the MBC facts of life are frustrating.

And yes, Adams has been hospitalized since the beginning of the year, but it’s not to receive extreme treatments. It’s to receive palliative care for the intense pain the tumors growing in her bones and spine are causing.

What’s clear is that neither the Kellers nor their publications understand how social media can help people diagnosed with cancer. Reading the thoughts and experiences of another person who is in the same place you are can be a powerful tool for cancer patients. People can learn from each other, discuss treatment options, ask about side effects, and speak frankly about their hopes and fears. At the same time, writing about the cancer experience can be hugely therapeutic for many people, especially people who feel isolated by the disease. At Breastcancer.org, we believe strongly in this power of community, which is why we created our discussion boards way back when — they give people a place to talk freely and openly about breast cancer and their feelings.

Breastcancer.org President and Founder Dr. Marisa Weiss says, “Women living with metastatic disease have enormous courage, bravery, and medical expertise — and we need to give them many more opportunities to amplify their voices. They’re directly responsible for many critical medical advances. They’re the testing ground for most new life-saving treatments, from tamoxifen to Herceptin. They deserve and have earned our gratitude, honor, and respect.”

Social media is a community that offers interaction and conversation about all sorts of topics — from sex, sports, and dieting to nuclear physics, ecology, and metastatic breast cancer. If you can think of a topic, chances are there’s a blog and Twitter feed about it. If you don’t want to read about a topic, don’t. But don’t criticize someone who wants to talk about a subject that’s important to them or the other people that want to take part in that conversation. (NPR’s Linda Holmes has an excellent blog post on this very subject.)

I’d like to close with two quotes, another one from O’Brien and one from Brendatrue, also a member of the Breastcancer.org Stage IV and Metastatic Breast Cancer ONLY discussion board forum.

Brendatrue: “So, one of the many things I say to Lisa Bonchek Adams is, ‘Thanks for the courage you have demonstrated in sharing your own personal narrative. You deserve a tremendous amount of respect for being genuine and for allowing others a glimpse of what it is like for one woman to learn how to live daily with the challenges of metastatic breast cancer.’”

Katherine O’Brien: “I commend Lisa B. Adams for sharing her story. I frankly would be uncomfortable with that level of sharing, but I respect that we are all different. Lisa’s story is a compelling one, but it not the only one and I wish more voices were being heard. Still I am very grateful for what she is doing and I hope it brings new awareness of MBC and its treatment.’”

I think the most powerful reply to the Kellers is for all of us to keep talking about all stages of breast cancer and the way it affects our lives. Don’t let the conversation be stifled!

Editor’s Note: Lisa went home from the hospital on January 19. We also suggest you read The Metastatic Breast Cancer Network’s response to Bill Keller’s column.

Jamie DePolo is senior editor at Breastcancer.org. She's been writing science stories for non-scientists for 20 years. Her spare time is devoted to spoiling her assorted canines and felines and cheering for the Detroit Red Wings.

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