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 tumours 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 will likely 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 the hope of finding new and better ways of treating patients like them – women whose cancer has spread, or metastasised, and left them nearly out of options.
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 better able to target treatments or come up with new ones by answering important questions about the disease.
For example: is there something unique about tumours that spread to the brain or that recur many years after diagnosis? What allows very few women to outlive others by many years despite the same prognosis?
Most breast cancer patients are treated at centres that don't do research on tumours, so participating in studies at academic medical centres 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 tumour 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 analysed.
Using word of mouth and social media, the Metastatic Breast Cancer Project, run by scientists at Harvard and Dana-Farber Cancer Institute and the Massachusetts Institute of Technology’s Broad Institute, has enrolled more than 2 600 patients so far since launching last October. It's a pace nearly unheard of in medical research.
By gathering large numbers of tissue samples and information about how the disease progresses in different people, the project may be able to uncover useful trends.
It has produced a few enticing clues already, including small groups of patients who've responded unusually well to standard chemotherapy or to new immunotherapy drugs – some have survived for 10 years or more.
The researchers hope DNA analyses will help explain why and lead to treatments that will improve the odds for all patients with the disease.