'Count Me In': The Metastatic Breast Cancer Project

by Phyllis Johnson Patient Advocate

“Count Me In” is the slogan at the Metastatic Breast Cancer Project being conducted by MIT’s Broad Institute and Harvard’s Dana Farber Cancer Institute. Being counted is an important issue for metastatic breast cancer (MBC) patients, as we currently don't know exactly how many people live with metastatic disease. (Estimates on the number of women currently living with MBC in the United States range from 150,000 to 250,000.)

Making a difference

People in the MBC community want to be counted, and the Metastatic Breast Cancer Project is one way a patient can make a difference in breast cancer research. The project is collecting several types of information from participants. First, they fill out a questionnaire about their type of cancer, medicines they have taken, and their demographic data. There are sections of the questionnaire where the patient can comment on whatever factors she thinks are relevant.

Next the respondent gives permission to the researchers to contact her doctors for the biopsy and any other tissue samples that have been collected. One person told me that she has been hesitant to enroll in the project because she is concerned about having enough tissue left for her doctors to use in her treatment. However, the researchers ask for only a tiny bit of tissue and explicitly tell local doctors not to send a sample if it will not preserve enough for the patient’s records. The researchers use the tissue to run DNA and genomic tests to unlock the patterns in MBC tumors.

Finally, participants give a saliva sample so the researchers can compare their healthy DNA to the tumor’s DNA. Scientists hope that analyzing the genomic data will help them understand why some breast cancer metastasizes, and then find ways to end this disease that kills about 40,000 people annually in the United States alone. The information is kept anonymous and will be shared with other researchers studying cancer.

A strong response

Response to the project has outpaced expectations. More than 2,600 people in the United States and Canada have started the enrollment process. Being counted is important to people who often feel invisible when pink ribbon campaigns emphasize the victories of early stage survival. Metastatic breast cancer patients have often been counted as people who “beat cancer” in the five, 10 or 15 years when there was no evidence of cancer after their initial treatment, and they often resent that their metastatic state is not officially acknowledged when the cancer recurs.

Corrie Painter, Ph.D., associate director of the MBC Project, wrote in a recent blog post, “The patients that I’ve talked to want to be counted. This is a figurative and literal statement. They want their lives to count, they want their experiences to count, but they also want their numbers to be accurately represented so that researchers can have a better sense for how many people have metastatic breast cancer. Many patients have conveyed that they want more research focused on metastatic breast cancer, they want people to know and understand what metastatic means, they want new therapies that can extend their lives, they want to live.”

Kimberly Orsborn of Mount Vernon, Ohio, states it eloquently: “I am thrilled to be enrolled in the MBC Project As a stage 4 six-year survivor of IBC, on hospice, having run out of/given up on options, I'm hoping my DNA study might help others, even though I'll never know for sure. As a friend enthused when I told her the DNA test kit had arrived, ‘Kim, this will be your legacy!’ Indeed.”

What a legacy of hope and healing!

Phyllis Johnson
Meet Our Writer
Phyllis Johnson

Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)(c) organization focused on research for IBC. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.