Laurie Becklund: Creating a New Metastatic Breast Cancer Awareness

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.

Laurie started writing this essay in August 2014—it grew out of a speech she gave at Stanford’s Medicine X conference called “Treat Me Like a Statistic and Save My Life.”

As part of her research process, Laurie contacted the Metastatic Breast Cancer Network, a patient advocate group for people living with Stage IV breast cancer.

“My main focus is that we need to restate ‘awareness.’” Laurie said in her email to us. “ I mean, after 25 or 30 years? Would be nice. Under umbrella of what early stage (I was Stage 1) 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.”

I sent Laurie MBCN’s 13 Facts Everyone Should Know About Metastatic Breast Cancer

I won’t list all 13, but the first fact is especially important:

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

The lump in your breast will not kill you. Nobody dies from early stage breast cancer. But when cancer spreads beyond the breast — to bone, liver, lung, brain or some combination therein, it can no longer be cured.

Early detection is not a breast cancer cure. In fact, most of the 155,000 U.S. people currently living with metastatic (aka Stage IV) breast cancer were originally treated for early stage breast cancer — their cancer came back 5, 10, 15 and even 17 years later — even though they took excellent care of themselves and had regular mammograms.

It would be wrong to say that mammography doesn’t save lives. But as the American Cancer Society’s Otis Brawley says, we need to use it with caution, explain its limitations and realize that we need a better test.

Becklund was successfully treated for Stage 1 stage breast cancer in 1996. She had a lumpectomy and a short course of radiation treatments. She saw her doctor as directed and never missed an annual mammogram. She assumed she was cured.

But 13 years later, her cancer came roaring back. It was never seen on a mammogram. Results from routine blood tests prompted her doctor to order a PET and CT. “I learned the scans revealed Stage 4 breast cancer in my bones, liver, lungs and brain: a death sentence with an average life expectancy of three years,” Becklund recalled in her 2015 article.

Most people treated for early stage breast cancer won’t have a metastatic recurrence. About 30% will—and this is a story that is generally swept aside in favor of feel-good narratives.

Very few people grasp what “cure” means in the setting of breast cancer. Until a person dies of something else, there is always a chance breast cancer cancer can return—even if you had a peanut-sized, Stage 1 tumor, as Laurie Becklund did.

Metastatic breast cancer is not among the metastatic diseases that can be cured–like testicular cancer. (Testicular cancer is somewhat unique in this regard.) Lance Armstrong had mets: his testicular cancer spread to his brain, lungs and abdomen. He had his last chemo 17 years ago and, in all likelihood is cured.

Testicular cancer treatment has been heralded as a triumph of modern medicine, with sustained response to treatment in more than 90% of cases, regardless of stage. In 2011, overall cure rates of more than 95% were reported, and 80% for metastatic disease — the best response by any solid tumor, with improved survival being attributed primarily to effective chemotherapy (cisplatin).

Unfortunately, that is not our story in metastatic breast cancer. 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. Treatment is lifelong. Eventually all treatments stop working.

We don’t really collect meaningful statistics on metastatic breast cancer recurrences. US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between—i.e., people currently living with metastatic breast cancer.

Remember, about 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

• NCI and SEER database record incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence — which is how the majority of people are thrust into the metastatic breast cancer ranks.
• We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
• We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer who were previously treated for early stage breast cancer? The cancer registry does not track them — until they die.

According to Becklund, Big Data is another missed opportunity. “There is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them,” she wrote. “In the Big Data-era, this void is criminal. Consider what Wall Street does. Even the tiniest companies can see how much stock they sell, compare themselves to cohorts, review history, predict trends. Why can’t we create such a database for cancer patients, so we can all learn from patient experiences and make more educated decisions on what treatments will extend and improve lives?”

One issue that Becklund did not address is the truly appalling state of funding for clinical trials in the United States. When adjusted for inflation, the NIH budget is nearly 25 percent below its 2003 level.

“ASCO is deeply concerned about continued stagnation of federal research funding,” ASCO immediate-past President Clifford A. Hudis, MD, FACP said. “All types of high-quality cancer research projects are at risk of being slowed, halted or simply not pursued. In addition to the challenges this presents to basic and translational research, NCI recently announced plans to cut the overall patient enrollment target for cancer clinical trials by 15 percent, after having already scaled back and consolidated its National Clinical Trials Network.

USA Today’s Robert Bianco recently interviewed Siddhartha “Emperor of All Maladies” Mukherjee:

“Mukherjee decries the budget cuts that have afflicted scientific research,” Bianco wrote. “ And if you think we already devote a lot of money to the NIH, the CDC and other government research outlets, Mukherjee says their combined budgets don’t equal the money we spent on air-conditioning for the Gulf War.”

All of the cancer drugs we use today got their start in clinical trials. Fewer clinical trials means fewer drugs—and that’s for ALL cancers—not just breast cancer. Moreover, consider the brain drain—thanks to these ongoing funding cuts, we are not developing the next generation of researchers.

“The system we live in as metastatic breast cancer patients is simply not designed to deal with the cycle we are living and dying in,” Laurie wrote. “The estimated 40,000 women (and a few men) who die annually can’t wait years for FDA-approved, ‘gold standard’ clinical trials. We’re dying now.”

.