Personal Stories, Research, Dollars Making A Difference
By: Ginny Mason, RN
Executive Director of the Inflammatory Breast Cancer Research Foundation and Komen Advocate in Science
My right breast had gotten larger and itchy. The skin looked kind of like an orange and I was having sharp, shooting pains in the breast. As I stepped from the shower one morning my husband said, "Your breast looks sick, go to the doctor!"
As a 40-year old nurse, I figured it was nothing serious, probably peri-menopausal changes, but I went. My family doctor wasn't worried, but sent me for a mammogram. When the tech said I was "good to go," I asked to see the radiologist and described my breast symptoms. He called me a "hypochondriac nurse" and told me to stop worrying. Later, my family doctor called and said my mammogram just showed dense breast tissue and since I had no family history of breast problems, it was probably just a cyst and I should try ibuprofen for the pain.
A few months passed and my symptoms got worse. I was sent to a surgeon for evaluation and he suggested a biopsy to figure out what was going on. When he couldn't find a lump for the fine needle aspiration, he opted to remove a small amount of tissue. With an icepack tucked into my bra, I headed back to work dropping off the tissue sample at the hospital on my way. I was to meet the surgeon the next day to discuss the findings.
Ginny Mason, RN
Perhaps it was denial, but I went alone to that appointment. When the surgeon sat down across from me and took my hand, I should have known it wasn't good. He said, "You have inflammatory breast cancer. On a scale of 1 to 10, this isn't the one you want." I replied, "I didn't know I wanted any...and by the way, what's inflammatory breast cancer?" That was March 18, 1994.
As a nurse, I thought I knew about breast cancer but had never heard of inflammatory breast cancer (IBC). I knew about lumps but didn't know things like pain, increase in breast size, intense itching, rash or redness could signal breast cancer.
Today, getting a timely, accurate diagnosis is still a problem for those with worrisome symptoms. IBC patients also tend to be younger, making mammograms less helpful. The symptoms can mimic mastitis (an infection) so antibiotics might be given. Symptoms can vary, and many physicians aren't familiar with the disease. Patients may need to advocate for themselves to receive a timely diagnosis. Timeliness is critical because IBC is always a IIIB or higher at diagnosis due to the lymph system involvement. About a third of IBC patients will have disease spread beyond the breast and lymph nodes at time of diagnosis (stage IV).
I was fortunate to have my treatment plan guided by the National Cancer Institute. My oncologists understood the aggressive nature of IBC and recognized their own lack of experience in treating the disease. I received chemotherapy first (which is now standard treatment for IBC, but a new idea in 1994). Today, a combination of chemotherapy, surgery and radiation has been adopted and shown the best outcomes. But while more chemotherapies and targeted treatments are available and survival has improved, more research is needed to change the course for IBC patients.
Ginny with her first great-grandchild. “Her mother was 3 months old the day I was diagnosed with IBC, and I never dreamed I would live long enough to see her grow up, let alone marry and have her own children!”
In spite of a dismal prognosis, my disease responded to treatment. While not my plan, I found myself speaking out on breast cancer, especially in younger women. In 1999, I began volunteering with the newly formed Inflammatory Breast Cancer Research Foundation and it slowly took over my life! Following in the footsteps of many others, I've found my niche in being involved in research and advocating for others facing breast cancer.
The IBC Research Foundation has been tenaciously fostering innovative IBC research, but our voice and reach haven't been loud or wide enough. IBC remains an unmet need in the breast cancer community. That’s part of the reason why I’m excited about this new collaborative effort with Susan G. Komen and the Milburn Foundation. Together, we will increase public awareness of IBC, so that individuals can be diagnosed, and receive treatment, as early as possible. And more importantly, we will provide opportunities to engage more creative minds in finally solving the IBC puzzle.
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