let’s have a moment of silence for those 108 women
and men who are no longer with us.”
That moment of silence gave way to tears—and to a
new activist group, MET UP.
Over the past 15 years, the voices of people living
with metastatic breast cancer have become louder
and more urgent. Social media—Facebook, Twitter
and personal blogs—have made it easier for these
women and men to meet and organize. Many of
these advocates fully expect to die of their disease.
When breast cancer is metastatic or stage IV, it
means it has spread from the breast to other parts
of the body. There is no cure. About 40,000 women
and men in the U.S. die of the disease every year.
These advocates have chosen to use the time they
have to draw attention to the needs of patients like
them who are living with and dying of metastatic
Susan Rahn took part in that first die-in in
Philadelphia. Rahn, of Rochester, New York, had
been diagnosed with breast cancer two years earlier,
at age 43. About 6 percent of U.S. women who learn
they have breast cancer each year have “de novo”
metastases—meaning their cancer is metastatic at
diagnosis. Rahn is one of them. She says the diagnosis explained the pain she’d been feeling in her
lower back and ribs—that’s where the cancer had
spread from her right breast. But she couldn’t find
an answer to her biggest question: How did this
happen? Her mother had been diagnosed with
stage I breast cancer at age 72 and had been treated
with a lumpectomy and radiation. That’s how Rahn
thought breast cancer was supposed to go. The more
she learned, the more alarmed she became. “I was
like, wow, all of these people die every year. Why
isn’t anyone talking about this?”
Breast Cancer Awareness Month was launched in
October 1985, with the aim of educating women
about early breast cancer detection through breast
self-exam and mammography—the screening test
first recommended in 1980. By the early 1990s,
pink ribbons and products had taken hold, and
walks and runs to raise money for breast cancer
research were common. Amid the celebration
of survivorship, many metastatic breast cancer
patients felt overlooked.
Between 2000 and 2004, more than 11% of women with metastatic
breast cancer who were under the age of 64 at diagnosis survived
BY THE NUMBERS
of new breast cancer cases in the United
States are “de novo,” meaning they are
metastatic or stage IV at initial diagnosis.
An estimated 155,000 women are living with metastatic breast cancer.
Sources: Metastatic Breast Cancer Network and June 2017 Cancer Epidemiology, Biomarkers &
Prevention. Statistics on diagnoses and deaths are in the U. S. alone.
Between 20% and 30% of women with early-stage breast cancer will
later be diagnosed with metastases.
Median survival after a
metastatic breast cancer
diagnosis is roughly
Approximately 40,000 breast cancer deaths occur each year.
About 110 women die each day of breast cancer.
of breast cancer research dollars are directed to metastatic breast cancer.
One study found that 61% of people know very little about metastatic
Five-year relative survival rates for women ages 15-49 diagnosed with de novo
metastatic breast cancer doubled, from 18% to 36%, between
1992-1994 and 2005-2012.