In the Big Data-era, not having a comprehensive database of metastatic breast cancer patients is “criminal”

Laurie Becklund, a former LA Times staff writer, died Feb. 8 of metastatic breast cancer. The Times published an op-ed on Friday that Becklund had written before she died, discussing how she felt about her diagnosis, where treatment and awareness falls short, and what she hoped would be the future for others who unfortunately will find […]

Laurie Becklund, a former LA Times staff writer, died Feb. 8 of metastatic breast cancer. The Times published an op-ed on Friday that Becklund had written before she died, discussing how she felt about her diagnosis, where treatment and awareness falls short, and what she hoped would be the future for others who unfortunately will find themselves in the same situation.

Becklund’s message isn’t what you typically hear from breast cancer patients, and her perspective is one that challenges what we generally consider to be support and effort toward saving lives.

Promise me, I told my friends and family, that you’ll never say that I died after “fighting a courageous battle with breast cancer.” This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.

Promise me you’ll never wear a pink ribbon in my name or drop a dollar into a bucket that goes to breast cancer “awareness” for “early detection for a cure,” the mantra of fund-raising juggernaut Susan G. Komen, which has propagated a distorted message about breast cancer and how to “cure” it.

For Becklund, early detection did not save her. She points out that she not only had 20 mammograms, which didn’t detect her disease, but also the well-documented issue of mammogram screening that can lead to misdiagnosis and unnecessary radiation and other treatments.

For someone with such a devastating diagnosis, finding help and getting answers is crucial, especially for a veteran reporter who helped The Times win a Pulitzer Prize. But what’s out there right now in terms of progress and support isn’t nearly enough, according to Becklund.

The most powerful organization in the breast cancer universe, Susan G. Komen, has raised $2.5 billion over the last 20 years, much more than many corporations will ever earn. Yet Komen channels only a fraction of those funds into research or systems to help those who are already seriously sick. Most of that money continues to go to a breast cancer “awareness” campaign that is now painfully out of date.

We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them.

In the Big Data-era, this void is criminal.

Awareness is great, but it doesn’t create results and it doesn’t save lives unless information can become directly useful to each individual. Surviving or dying from cancer shouldn’t feel like a roll of the dice – like playing Chutes and Ladders, Becklund said.

We need people — patients, doctors, scientists, politicians, investors, families — to make a fresh start. We must create a new system of data collection and an open, online, broad-range database about patient histories that will provide information invaluable to those who’ve been given a death sentence. Patients as well as doctors must contribute.

It will come too late for me. But it is possible to end the game: Patients shouldn’t have to climb up ladders and fall down chutes.