Imagine that you have an acquaintance in Springfield, Massachusetts, a city best known as the birthplace of basketball and home of the Basketball Hall of Fame. The fourth largest city in New England, Springfield boasts 155,000 residents of various ethnicities and religious beliefs.
Now envision that over the next five years, 120,900 (78 percent) of Springfield’s citizens pass away, and only 3,100 (2 percent) survive a normal life span.
In the event of such a situation, you’d expect considerable media coverage and public outrage. But the deaths continue mostly unnoticed.
If you believe such a circumstance to be unthinkable, think again.
Including myself, an estimated 155,000 Americans — the population of Springfield, — are living with metastatic breast cancer (MBC). MBC is cancer that has traveled from the breast and underarm lymph nodes to other parts of the body. Although we're in the midst of October's Breast Cancer Awareness Month (BCAM), you may not be aware that:
• 98 percent of people with MBC will die of it, and 78 percent will perish within five years of diagnosis.
• Average survival with MBC is three years.
• The number of women dying annually hasn’t varied since the mid-1980s when BCAM was initiated. In 1988, approximately 40,000 women perished and in 2011, 40,931 women died of MBC.
• Each year, roughly 220,097 women and 2,078 men are diagnosed with breast cancer, with no improvement in 10 years.
Perhaps you’re convinced that people who have completed treatment for “early stage” breast cancer are cured, whereas in fact, 30 percent of those with early stage breast cancer will eventually develop MBC.
Furthermore, the commonly used “five year survival rate” for breast cancer is terribly misleading, as people can develop MBC as many as 30 years after their initial breast cancer diagnosis. My own cancer recurred a full 18 years after my “early stage” disease was found.
The bottom line is: One out of every three women diagnosed with breast cancer will ultimately die of it.
Whereas patients with early stage breast cancer will eventually complete their therapy, we’ll require treatments for the rest of our lives. So unlike people with post traumatic stress disorder (PTSD), there’s no “post” for us.
Despite 27 years of Breast Cancer Awareness Month, MBC has been largely ignored. Those living with the disease are the "Cinderellas of breast cancer,” for whom October’s pink ribbons have done absolutely nothing.
These trends can be reversed if we:
• Provide education about MBC and male breast cancer by allocating one week in October towards MBC and one day for male breast cancer
• Allocate breast cancer funding proportionally by earmarking 30 percent for MBC and 1 percent for male breast cancer research.
• Discontinue misleading the public with statements that breast cancer is preventable and curable.
• Enhance breast cancer screening by enacting a nationwide breast density notification law requiring physicians to alert women with dense breasts.
• Eliminate waste through legislation mandating that 100 percent of cancer research results be published in cancer journals
• Expedite the availability — and affordability — of drugs for terminal patients by “fast tracking” drugs, and enabling those with terminal disease to have better access to drugs for compassionate use. Finally, reverse the current law inhibiting Medicare from negotiating drug prices with pharmaceutical companies.
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You may have heard breast cancer referred to as a “journey.” As a person with MBC, I perceive my situation to be more of a “forced march.” With the above improvements, I and 155,000 other MBC “Cinderellas” will no longer be constrained to follow the path we reluctantly plod every day of the year — and not just in October.
Anne Loeser is a retired software development project manager who was diagnosed with MBC 18 years after her "early stage" breast cancer diagnosis. She resides in Salt Lake City with her husband and parrot.