After serving as a public policy advocate and volunteer for Susan G. Komen for many years, I decided to focus my interest in research advocacy and joined Advocates in Science (AIS). The AIS community is very fulfilling and provides a wide range of educational and training opportunities as well as opportunities for service as a patient advocate in a variety of settings.
In January of 2012 my role as an advocate changed when I was diagnosed with triple negative breast cancer (TNBC). My AIS experience and education helped me understand the implications of the diagnosis and made decisions about my care easier. During one visit, my breast oncologist remarked, “Peggy, I think you know too much.” But honestly he was pleased with the fact that I was engaged in my treatment.
In May 2012 I was invited, through my AIS membership, to join a consensus panel convened by Monica Morrow, MD, a prominent breast surgeon, and Meena Moran, MD, a highly respected radiation oncologist. The Komen-funded panel addressed the issue of re-excision – a second surgery after lumpectomy to achieve wider or cleaner margins. Participants on this consensus panel included a diverse group of distinguished members of the breast cancer medical community, each representing a different area of breast cancer treatment and research.
Dr. Nehman Houssami, MD, PhD, from the University of Sydney, revisited her previous meta-analysis on re-excision using the most current data and provided updated results to the panel. Other members of the committee also gave presentations in order to provide multiple perspectives for the panel to consider.
The following blog appeared in The Huffington Post on February 4, 2014.
Development of the polio vaccine, progress in AIDS research and new cancer treatments — these are just a sample of how much we owe to an African-American woman who died of cervical cancer in Baltimore in 1951. The world learned of her heretofore unacknowledged contributions in one of the most compelling reads of the last few years – The Immortal Life of Henrietta Lacks by Rebecca Skloot.
Mrs. Lacks’ cancer cells were taken without her knowledge or permission, and because they replicated almost without end, her “immortal” cells, called HeLa cells (short for Henrietta Lacks) have arguably been one of the most powerful tools in medical research ever since. It’s fitting, during Black History Month and on World Cancer Day, that we acknowledge and honor the contributions of this one African-American woman to medical history.
I think of what cancer patients like Henrietta Lacks endured in the 1950s, when segregation laws meant that African Americans could legally be treated in “colored wards” of hospitals or denied treatment all together. Skloot notes in the book that African Americans often were treated at later stages of their disease. A Johns Hopkins University study in 1966 reported that African-American women with breast cancer in the 1950s had lower survival rates than the national average, and far below those of their white counterparts.
With segregation thankfully a thing of the past, we are still deeply concerned about outcomes for African-American women facing breast cancer today. Although African-American women are less likely to be diagnosed with breast cancer, they are still 41 percent more likely to die of it than white women. African-American women also are more likely to be diagnosed with late-stage and aggressive breast cancers, and more likely than white women to be diagnosed under the age of 45, according to American Cancer Society statistics (there is extensive information about African Americans and breast cancer on our website).
More than 40 years ago, the United States declared a “War on Cancer,” implementing the National Cancer Act (NCA) in 1971. For those who have wondered, “What did that really mean? What have we really accomplished?” the answer is promising.
Two new reports published last month showed that 1) cancer death rates in the U.S. have continued to decline by about 20 percent in the last 20 years (with breast cancer mortality declining by 34 percent since 1990), and 2) fewer years of life have been lost to cancer since the NCA was passed.
Today – World Cancer Day – is the perfect time to mark what we as a community, a nation, and individuals have made possible in the U.S. It’s clear that advances in research, early detection and more effective treatments, have led to more years with family and friends, more memories and more hope here in our country.
The war on cancer, however, extends far beyond our borders, with huge impacts on regions of the world where resources are scarce.
The International Association of Research on Cancer (IARC) reports that cancer cases are expected to rise to 22 million annually over the next 20 years, and cancer deaths will grow from 8.2 million to 13 million each year. Low-and-middle-income countries will feel this impact the worst as their populations grow and age: IARC reports that more than 60 percent of the world’s cancer cases occur in Africa, Asia, and Central and South America. These regions account for about 70 percent of the world’s cancer deaths.
This increase creates what IARC calls an “impossible” strain on health-care systems even in richer countries. The global impact of cancer is estimated by IARC at $1.16 trillion US dollars in 2010.
Our promise at Susan G. Komen is to save lives and end breast cancer. It’s a monumental task, but with more than $2.5 billion invested in this fight, we are working passionately towards the day when no one has to hear the words “you have breast cancer.”
We are in communities across the U.S., ensuring women and men have access to treatment, financial and social support programs. We’re in laboratories around the globe, searching for answers to some of the most challenging questions in breast cancer with more than $800 million invested to date.
And our work continues in state capitols across the country – and in our own National Capitol. Public policy continues to be a key area of focus at Komen. We are proud of our advocacy work over the years to protect breast cancer screening and research funding and to advance breast health and cancer care policy at the federal and state levels. It is absolutely critical that breast cancer patients have access to lifesaving treatment and quality breast cancer care if we expect to continue to make progress against this disease.
Guest post by Komen’s Advocates in Science (AIS) member, Karen Durham.
After finding a suspicious lump in October 2008 and undergoing a series of tests and scans my diagnosis was confirmed in Feburary 2009 – I had metastatic breast cancer. After much discussion with my oncologist, she began searching for a clinical trial that I could participate in.
Within a month, I enrolled in a trial that compared the standard of care with the standard of care plus a drug that was approved for certain leukemias. Scientific evidence suggested this drug might be useful in solid tumors like mine.
As a member of Komen’s Advocates in Science (AIS) community, I had attended the San Antonio Breast Cancer Symposium in the past, and when I received the 2013 Program in the mail and saw that “my” clinical trial was going to be presented , I knew I would be attending again.
I don’t know if I can adequately describe the surreal feeling of sitting in a huge auditorium, packed with thousands of people, to hear the results of my own clinical trial. I was very fortunate to have several Komen AIS members, some Komen research staff, and a very dear friend sitting with me for support. I knew that my cancer had not grown in nearly 5 years, but did not know how the rest of the trial was progressing. I was both nervous and excited to learn more.