RIP Laurie Becklund: Journalist Wanted Big Data to Tackle Metastatic Breast Cancer

February 22, 2015
Laurie's 2013 MedX talk

Laurie’s 2014 MedX talk

Journalist Laurie Becklund died on February 8, 2015 from metastatic breast cancer at age 66. On February 20, 2015, Laurie’s byline appeared in the Los Angeles Times for the last time.

In an Op-Ed piece called “As I Lay Dying, Laurie explained how she came to be one of 150,000 US people living with metastatic breast cancer and one of the 40,000 Americans this incurable disease will kill this year.

As Laurie noted in her opening sentence, metastatic breast cancer is the kind that kills people–no one dies from early-stage breast cancer. But as Laurie discovered, cancer can come back–even decades after someone successfully completes their treatment. In Laurie’s case, her breast cancer came back 13 years after her initial diagnosis. Scans revealed the cancer was now in her bones, liver, lungs and brain. When cancer spreads outside the breast, it is no longer curable–with metastatic breast cancer the goal is to control the disease for as long as possible.

For the past six years, Laurie, like most people diagnosed with metastatic  breast cancer, lived her life in three-month increments. Every 90 days or so, someone with MBC  faces a battery of scans to see what the cancer is doing. If the current drug is working, you stay on it. If it isn’t working, you try the next line of treatment. The average patient may receive eight or 10 different treatment regimens in sequence. Eventually all treatments stop working.

In December 2014, Laurie learned there was nothing left to do or try.

“I am dying, literally, at my home in Hollywood, of metastatic breast cancer,” Laurie wrote. “For six years I’ve known I was going to die. I just didn’t know when.”

Laurie made her family and friends promise not to describe her as having fought 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.”

In her Op-Ed, Laurie recalled attending the Metastatic Breast Cancer Network’s  2010 conference in Indianapolis. “In one of the most powerful rituals I have ever seen, the group’s president asked all of us to stand, then sit back down when she reached the number of years since our diagnosis. At two years, most had to sit down.”

Laurie asked to be excluded from any photos or videos from that conference. As she explained in her editorial, in 2010 she didn’t want to call attention to herself or the disease. “Who would ever sign another book contract with a dying woman? Or remember Laurie Becklund, valedictorian, Fulbright scholar, former Times staff writer who exposed the Salvadoran death squads and helped The Times win a Pulitzer Prize for coverage of the 1992 L.A. riots? More important, and more honest, who would ever again look at me just as Laurie?”

It is probably fair to say meeting hundreds of other people living with metastatic breast cancer at that 2010 event gave Laurie a fresh perspective. In her LA Times essay, she describes meeting MBCN’s then president Ellen Moskowitz and former vice president Suzanne Hebert. (Ellen and Suzanne died within weeks of each other in 2012.)

By September 2014, Laurie had evolved from a reluctant conference participant to passionate metastatic breast cancer research advocate.  She was among the e-patients selected to address  Stanford’s Medicine X conference. Her presentation was called “Treat Me Like a Statistic and Save My Life.” 

In August 2014,  as she was working on her MedX speech, Laurie contacted MBCN for some supporting materials. “I am doing a presentation  in two weeks about metastatic breast cancer,” she told us. “It’s a pitch for big data projects. I’m also going to write an LA Times Op-Ed, primarily about the need to revise what breast cancer ‘awareness’ should mean today. I’d also LOVE to loop a copy of a video of the people in the audience being asked to stand, then sit down as the count of years alive goes up. do you have one? It really is one of the most compelling statements about MBC I’ve ever seen. Happy to credit MBCN.”

We responded that we didn’t have film of the audience, but sent her a link to the speaker’s portion.  (Ellen Moskowitz polls the crowd  at the 9 minute mark of this video.)

Laurie then offered some additional insights about her talk:

My main focus is that we need to restate ‘awareness.’ I mean, after 25 or 30 years? Would be nice. Under umbrella of what early stage (I was Stage1) cancer (all of us) needs to be aware of. Have you or anyone else posted anything that says here, these 3 or 4 points are most important? Have any of the organizations done that specifically? I’d love to be able to have a short, central message that includes questions that we all believe journalists should be asking for the NEW awareness. (Wish I had a better name.)

Another thing:

This is really about big data. I’m planning to stand up there and say (now that I’m at last out of the closet professionally) Use us. Use me or lose me. These big data people have so many conflicts, 30 different types of documents, inc in writing, competition among hospitals and companies for patents, etc, privacy issues, that I think it will be years before this really takes off.

It would be an organizing challenge, but i don’t think it would be hard to teach us and all those volunteer runners to do some data input on to a universal open source platform.

Things I’ve thought of:

— patients’ own record of side effects, including on specific drugs.

— putting in your own basic data as at doctors’ offices, including ER and PR but also FISH etc.genomic tests if done.

We sent Laurie the following:

13 Things Everyone Should Know About Metastatic Breast Cancer

Why Mets Matter PowerPoint (M Mayer, 2011)

What Have We Learned About Metastatic Breast Cancer (Patient’s Cheat Sheet to the Basics)

ASCO and Cancer and Big Data:

100 Stories About People Living With Metastatic Breast Cancer

Friends We Lost to MBC in 2013

Dumb Stuff People Say to People With Metastatic Breast Cancer

Two months after Laurie gave her talk, on October 13–National Metastatic Breast Cancer Awareness Day– the Metastatic Breast Cancer Alliance released the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer. The Alliance, which represents 29 cancer organizations, conducted a comprehensive analysis of current MBC research and patient needs, as well as information and services. As we reviewed the executive summary, it seemed to us that Laurie Becklund could have written it:

In her Op-Ed, Laurie wrote: “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.”

Laurie Becklund was a gifted and widely admired journalist. We can think of no finer tribute than for her journalism colleagues to continue Laurie’s crusade.

As Laurie said: Use us.