Ed. Note: Champions of Change is a weekly initiative to highlight Americans who are making an impact in their communities and helping our country rise to meet the many challenges of the 21st century.
I am a 14 year survivor of inflammatory breast cancer, and have a strong family history of the disease, both my mother and grandmother died of breast cancer. On Tuesday, 9/27 I was honored to participate in a Champions of Change discussion with others who care deeply about breast cancer. We want, for ourselves and for others, quality lives that are long and well-lived, not cut short by breast cancer, or absorbed by a lifetime of worry and side effects. Whether it is through primary prevention, prevention of metastasis, or beneficial treatments that extend quality life while living with metastasis, we don’t want our lives ended early because of breast cancer and we want to make a real difference for the next generation.
As members of the National Breast Cancer Coalition, we are committed to ending breast cancer and through Breast Cancer Deadline 2020, to change the conversation about breast cancer. We need a paradigm shift in the breast cancer world – in government, the media, research, and advocacy - to focus on those areas that are truly meaningful to the goal of ending breast cancer, to primary prevention and to the causes and prevention of metastasis.
Even with the efforts of very committed activists, clinicians, and researchers, and mammoth financial and personal investment in almost every facet of breast cancer, progress against meaningful measures is painfully slow and even questionable in some areas.
We have seen no reduction in the incidence of women diagnosed with advanced breast cancer, those more difficult to treat and more likely to metastasize, in spite of widespread use of screening. About 1/3 of those diagnosed with breast cancer will suffer recurrences and metastatic spread, often many years after diagnosis. We have achieved minimal progress against metastatic disease and added increasingly toxic, costly treatments that compromise quality of life, and many times the financial stability of women and their families. We must achieve more meaningful results with what are precious resources, both financial and human.
After decades of research and billions of dollars, it is still about lives cut short, and treatments that fail. It is about late stage diagnosis and inadequate treatment because of disparities and a lack of access to health care. It is about a lifetime of side effects and risks, due to treatment, some of which may provide little benefit. It is about living with the lurking fear of recurrence and worry whether anything will be better for the next generation.
We will not step back from our goal to end breast cancer and are confident that if we, together with our extraordinary research and clinical community, shift our focus, we can make truly meaningful progress to end breast cancer. We can do better, so I challenge you, as you read this, to think differently, to collaborate, to engage cross-discipline, to be open to new ideas, to challenge your beliefs, and to create new approaches that will result in meaningful outcomes for patients and their families. Join our efforts at the National Breast Cancer Coalition and Breast Cancer Deadline 2020.
Pat Haugen is a 14-year inflammatory breast cancer survivor, and is the National Breast Cancer Coalition (NBCC) Field Coordinator for South Dakota and a graduate of all of the NBCC Project LEAD science training courses.