Crowdsourcing effort takes aim at deadliest breast cancers

CHICAGO -- Forget the pink ribbons. Spitting in a tube for science is what unites a growing group of breast-cancer patients taking part in a unique project to advance treatment for the deadliest form of the disease.

For many of the 150,000-plus patients nationwide whose tumors have spread to bones, brains, lungs or other distant organs, the hue heralding breast-cancer awareness and survival each October is a little too rosy. They know cancer likely will kill them. And they've often felt neglected by mainstream advocacy and medical research.

But now they have a way to get involved, with a big new project that aims to gather enormous troves of information about their diseases in hopes of finding new and better ways of treating patients like them -- women whose cancer has spread, or metastasized, and left them nearly out of options.

"Patients want to live, and we know that research is the way that we're going to be able to live," said Beth Caldwell, a former civil- rights attorney in Seattle diagnosed with metastatic disease in 2014.

The idea is to gather molecular and genetic clues from as broad a group of metastatic breast-cancer patients as possible.

With data from thousands of people, researchers think they will be able to target treatments better or come up with new ones by answering important questions about the disease.

For example: Is there something unique about tumors that spread to the brain or that recur many years after diagnosis? What allows a few women to outlive others by many years despite the same prognosis?

Most breast-cancer patients are treated at centers that don't do research on tumors, so participating in studies at academic medical centers far from home is cumbersome at best.

Patients sick or dying from their disease face additional hurdles.

This project is different. Patients sign up online, mail in saliva kits for genetic testing and allow use of their tumor-tissue samples and medical records.

Researchers use social media to keep them posted about progress and periodically invite participants to visit the Cambridge, Massachusetts, lab where their specimens are being analyzed.

The Metastatic Breast Cancer Project is run by scientists at Harvard and Dana-Farber Cancer Institute and was launched in October with funding from the Broad Institute of MIT and Harvard, an independent not-for-profit group.

Using word of mouth and social media, it has enrolled more than 2,600 patients -- a pace nearly unheard of in medical research.

"I enrolled from my recliner in my living room. I did my spit tube in bed," Caldwell said.