The 2017 NFL draft takes place this weekend in Philadelphia as does Living Beyond Breast Cancer's national Thriving Together Conference on Metastatic Breast Cancer.
We realize the NFL team executives are busy, but we welcome them and the players, coaches, commentators, and fans to join us. Because advanced breast cancer — the kind that takes lives — impacts all of us. To name just a few:
Others' stories are still being written. Running back Ernie Green, a standout on the Cleveland Browns' 1964 squad, was diagnosed with Stage 1 male breast cancer in 2004. And ESPN reporter Shelley Smith covered the 2015 NFL draft sporting a bald head — evidence of her treatment for early-stage breast cancer.
Green and Smith are doing well, and we hope they will be among the 70 to 80 percent of people successfully treated for this disease. Unfortunately, 20 to 30 percent of people treated for early-stage breast cancer will have a metastatic recurrence. While some people live for years with metastatic breast cancer, it is incurable, and when someone dies from breast cancer, it is because cancer has spread beyond the breast, often to the lungs, liver, bones, or brain.
We lose more than 40,000 people in the United States to metastatic (also known as Stage IV) breast cancer every year — that's approximately 113 every day. The overwhelming majority of them did nothing wrong — they got their mammograms, they kept their follow-up appointments, they did everything their doctors advised. And yet their cancer came back.
We don't know why this happens. In fact, we don't actually know how many people are living with metastatic breast cancer. The estimate we hear from researchers and clinicians of 155,000 Americans is basically a guess.
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute and the Centers for Disease Control's (CDC) National Program of Cancer Registries collect population-based information on cancer cases and the initial course of treatment. SEER and CDC data plays a critical role in helping researchers and policy makers monitor cancer trends and determine what research is funded.
However, our population-based cancer registries currently track first diagnosis, initial treatment, and mortality information. Therefore, people diagnosed with early-stage breast cancer who went on to have a metastatic recurrence will not be counted during their lifetime.
But most people do not start with a metastatic diagnosis. They develop metastatic disease months or even years after their diagnosis and treatment for early-stage breast cancer. And when we don't count people, we don't provide for them.
Living Beyond Breast Cancer (LBBC) and the Metastatic Breast Cancer Network are leading the Metastatic Breast Cancer Alliance's effort to track metastatic breast cancer. Accuracy matters for science, and for research. The alliance is petitioning Congress to give SEER and CDC the funds and authority to work with state and local population-based cancer registries to collect accurate statistics for people living with metastatic breast cancer.
At 1 p.m. Saturday, the 400 LBBC conference attendees will demand to be counted, launching a social media effort that will call on people with this disease and those who care about them to sign a petition asking for all people living with MBC to be counted. To date, more than 6,000 have signed and the group aims for 10,000 before presenting it to officials following the San Antonio Breast Cancer Symposium in December.
Football is a game of numbers and of speed. The 32 NFL teams in Philadelphia this weekend know how fast potential draft picks can run, how high they can jump, how much weight they can lift, and even the details of their high school and collegiate performances. If we know this much about elite athletes, why can't we compile more accurate statistics on how many people are living with metastatic breast cancer? And why can't we step up the pace to find answers sooner?
With accurate numbers and hard-driving determination, we can.
Katherine O'Brien is a patient advocate with the Metastatic Breast Cancer Network (MBCN.org). She has been living with metastatic breast cancer since 2009. email@example.com
Catherine Ormerod is the vice president of programs and partnerships at Living Beyond Breast Cancer (LBBC.org) in Philadelphia. firstname.lastname@example.org
Sign the petition at https://tinyurl.com/TrackMBC