How would you propose fighting a deadly disease? You would probably want to educate primary care doctors to recognize its symptoms. You would want to alert the public to its dangers and encourage them to get quick medical treatment. You most certainly would want scientists to find treatments for the problem. No one approach would be sufficient.
Patients and doctors are often uninformed
This all seems like common sense, but when it comes to inflammatory breast cancer (IBC), much more work remains before those goals will be met.
One of the scariest aspects about my own diagnosis with IBC in 1998 was that I hadn’t a clue that my symptoms might be cancer. I considered myself well-informed about women’s health issues, but I had never heard of IBC and didn’t know that you could have breast cancer without a lump. As a result, I scheduled appointments for my escalating symptoms around my work schedule. If my primary care doctor was aware that my symptoms could indicate a rare form of breast cancer, he didn’t share that information with me, and didn’t push me to get tests done faster.
Once I was diagnosed, my doctors and I had to make treatment decisions based mostly on research on women with other forms of breast cancer because at that time, clinical trials usually specifically excluded IBC patients. IBC accounts for about 2-6 percent of breast cancers in the United States, but 10 percent of the deaths, so researchers seemed to feel that including IBC patients would skew their data.
In 1999, the Inflammatory Breast Cancer Research Foundation was started to change this situation. Since then there has been incremental change with several groups spreading the word, the opening of specialty IBC clinics, and money raised for IBC specific research.
Yet despite the work of dedicated advocates, clinicians, and researchers in the IBC community, every week a new member of the online support groups I belong to talks about how shocked she was to find out that her red swollen breast was the first sign of a type of breast cancer she had never heard about. Every month I hear about a patient whose primary care doctor or local oncologist missed the diagnosis or started the patient on the wrong treatment.
While there are new drugs since my diagnosis in 1998, there have been no major breakthroughs in the basic treatment for IBC, which continues to be trimodal treatment of chemotherapy, surgery, and radiation for those diagnosed at Stage 3B, the earliest possible stage for IBC.
A plan to address the problem
In September 2017, my friend Brenda Denzler and I were invited to lunch with Gay Devi, Ph.D., a researcher at Duke Medical Center in Durham, North Carolina, and some of her colleagues, to talk about Duke’s initiatives on IBC. They are doing lab and epidemiological research on IBC and want to increase community outreach and involvement. Brenda and I participate in an informal group of people in the Carolinas affected by IBC, and Dr. Devi wanted to get some ideas for community outreach from us as well as find ways that people in our group could participate in Duke’s program.
With the help of a U.S. Department of Defense $1.9 million “Breakthrough Award” to study why some breast cancers are more metastatic than others, the Duke IBC Consortium plans to tackle the IBC issue from multiple perspectives.
Brenda and I toured the lab where the clinical part of the research is being done. In real life, IBC cells grow in the lymph vessels where they are constantly tumbled in the flow of lymphatic fluid. So in the Duke lab, IBC cells aren’t cultured in a static petri dish, but in one that mimics the motion IBC cells are subjected to in humans.
We also toured the hospital where IBC patients are treated. One of the issues for IBC treatment is that hospitals like Duke mostly see patients referred to them by other doctors and hospitals, so they are rarely involved in diagnosis at its earliest point. At lunch, we discussed ways to educate primary care doctors and community health care centers about IBC. We talked about the need to reach people where they are, like churches and civic clubs, not just medical settings.
A key component of the IBC Consortium is a multi-disciplinary approach. Researchers led by Kevin Williams, Ph.D., at North Carolina Central University are collaborating with Duke on both public outreach and laboratory research. The consortium plans a retreat in spring 2018 for scientists, clinicians, and advocates to help people look at IBC issues from multiple perspectives.
I applaud Duke, North Carolina Central University, and the other organizations in the consortium for including two IBC advocates at the lunch table to talk about what needs to be done. Brenda and I had quite a few ideas about the importance of educating doctors about IBC and about how to talk to patients in informative, compassionate ways about cancer. We like the idea of tackling IBC in the community, medical schools, and the lab. It’s a new trimodal approach.
See more helpful articles:
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.