Bill Keller’s Misguided NYT OpEd Piece: MBCN Responds

Dear 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 www.mbcn.org

Please start by reviewing Dr. Don Dizon’s excellent talk,  “Living with MBC,” presented at MBCN’s 2013 conference: https://www.youtube.com/watch?v=5RKCGEpk2po

Sincerely,

The Metastatic Breast Cancer Network

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