Metastatic breast cancer patients share medical records, tumors with researchers

Latonya Wilson is trying to fight breast cancer in a novel way, with a saliva sample.

Wilson has stage IV metastatic breast cancer, which means her cancer has spread and cannot be cured.

But she’s hoping to help other women through an unusual, crowd-sourcing project, driven by people like her.

Wilson spoke to FOX 13 Tampa Bay's Dr. Joette Giovinco about why she got involved.

Everybody hollers about 'We need a cure, we need a cure,” Wilson says.  “So if you want a cure, you want better treatments, then participate in this."

This is the Metastatic Breast Cancer Project, a non-profit research project with more than 2,600 participants, promoted by social media and patient advocacy groups.

Volunteers fill out questionnaires, submit saliva samples, and they give researchers access to their medical records and tumor samples.

In return, they get updates on what researchers are finding.

They can even tour the lab, where scientists are looking for genetic clues that could lead to early, more targeted interventions.

Dr. Nikhil Wagle, who heads up the MBC Project says this is different from how most research studies are run.

“This is a way for patients to take participation and research into their own hands,” Dr. Wagle says.

Since the project began a year ago, researchers have identified small groups of patients who have responded well to standard chemotherapy, or to new immunotherapy treatments.

They’re hoping that DNA analysis will explain why.

Early finding are encouraging women like Jessica Leip, who was diagnosed with metastatic breast cancer in 2013.

Her reason for joining the study is simple.

“Because, if you go online and you Google this disease, you know, they have you dead in 5 years,” Leip told FOX. “I hope, I hope there's a cure. We need a cure."

The data collected will be shared with other research teams, and the participants will be updated on what researchers are discovering.

For now, Latonya Wilson says just participating gives her comfort.

"I helped by providing my medical information,” Wilson says.  “I helped by trying to get other people to participate in this. The doctors and the scientists, they can do but so much.  But they need people to participate."

To read more about the Metastatic Breast Cancer Project, visit www.mbcrproject.org.

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