My name is Katherine O’Brien and I have metastatic breast cancer (MBC). This is the fatal form of the disease—it is treatable, but incurable. I am one of thousands of people living with Stage IV breast cancer. We don’t know exactly how many women and men are living with MBC—and that’s a problem we must address if we want to improve outcomes.

Clinicians and researchers are often quoted as saying there are 155,000 US people currently living with metastatic breast cancer. That’s basically a guess. In 2016, we just don’t know.

Won’t you please help me—and my friends at the Metastatic Breast Cancer Alliance get definitive numbers? We need to start counting ALL people living with metastatic breast cancer! Please sign this petition NOW, via the box on the right. 

When I was diagnosed with Stage IV breast cancer in 2009, I was shocked to learn that we currently have no reliable statistics on how many people are living with MBC. That’s because our population-based cancer registries (e.g., SEER, CDC Division of Cancer Prevention and Control, NAACCR, state and local cancer registries) currently do not count metastatic recurrences.  In 2016 we only have first diagnosis, initial treatment and mortality information.

MBC is the second leading cause of cancer death for women in this country--40,450 will die this year. Worldwide, MBC claims half a million lives annually. We need to be counted NOW, while we are still alive. We need people—especially those who influence research funding—to see us and to work to improve outcomes in the clinic TODAY.

I was Stage IV from the start—but most people aren’t. According to SEER incidence figures, 6% of all invasive breast cancers are Stage IV at initial diagnosis. People like me are counted as Stage IV—because initial diagnosis is tracked. But most of my MBC friends had metastatic recurrences and will be counted ONLY after they have died.

Most people do NOT present with a metastatic diagnosis – they develop metastatic disease a few months or even many years after their  diagnosis and treatment for early-stage breast cancer. We need SEER and the CDC to track breast cancer recurrence—which is how the majority of people join the metastatic breast cancer ranks.

My friend Shirley was diagnosed with early-stage breast cancer in 1991. Her cancer came back 12 years later—she has been living with Stage IV breast cancer for the past 13 years. For statistical purposes, Shirley and other patients like her are tallied as successfully treated for early-stage breast cancer. Only upon their deaths will they be counted as metastatic breast cancer patients.

My friend Sarita was diagnosed with breast cancer in 2006. In 2013, Sarita learned her breast cancer had metastasized. Like Shirley, Sarita was NOT counted. In June 2016, Sarita died—and was, at last, counted.

Since 1973 and 1992 respectively, the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) the CDC’s National Program of Cancer Registries, have been collecting 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.

According to the Metastatic Breast Cancer Alliance’s Landscape Analysis, which analyzed research grants from the major cancer research-funding agencies around the world, research funding for metastatic breast cancer accounts for only 7% of the total breast cancer research investment. Without an ACCURATE count of the number people currently living with Stage IV breast cancer, that number is unlikely to change.

The Metastatic Breast Cancer Alliance wants Congress to give SEER and CDC the funds and authority they need to work with state and local population-based cancer registries to collect accurate statistics for those with metastatic breast cancer. Specifically, we want answers to the following questions:

1.       How many people are alive today living with MBC?

2.      How many early-stage breast cancer patients experience a recurrence? How many of these recurrences represent metastatic disease?

3.       How have outcomes changed over time?

As of 2016, people living with metastatic breast cancer have remained in the shadows, so discounted as essentially not to be counted at all—until they died. This has GOT to change.

 We want SEER, CDC and all cancer registries to stop ignoring metastatic recurrences and start counting ALL people living with metastatic breast cancer. We can’t remain uncounted and invisible.

 If you ask me how many US people are living with metastatic breast cancer I would say “I don’t know.” If you ask me how many US people die from metastatic breast cancer every year, I would say “Far too many.”

Please help me and all my Stage IV sisters and brothers stay in the picture! Thank you for signing and sharing this petition.

 Katherine O’Brien

Metastatic Breast Cancer Patient

 

This petition will be delivered to:

Dr. Lynne Penberthy, Associate Director for the Surveillance Research Program (SRP)

Dr. Lisa Richardson, Director, CDC Division of Cancer Prevention and Control

Dr. Katherine Lyon Daniel, Associate Director for Communication, Centers for Disease Control and Prevention

Peter Garrett, Office of Communications and Public Liaison (OCPL)
National Cancer Institute