Increasing IBC Awareness: Mary Jennings Smith
Mary volunteers with other organizations, too, and is passionate about increasing people’s understanding of inflammatory breast cancer. She answered questions about that passion from Living Beyond Breast Cancer’s writer and content coordinator, Erin Rowley.
What was your experience of being diagnosed with breast cancer?
I had been taught that if I had cancer, it would be round. That wasn’t the case for me. I had felt something hard and flat [in my breast], but I wasn’t too concerned because the doctor said it was probably an infection. I had a mammogram, which showed nothing, and an ultrasound, which I assume also showed nothing.
I went back 4 months later and told the surgeon that I thought whatever it was had grown. He sort of poo-pooed my concern, but did send me for another ultrasound. The radiologist came in and told me the bad news. She made an appointment for me to see an oncologist within 2 days. By the time I saw him, my breast had started to enlarge. Within 2 weeks of scans, appointments to have skin biopsies, and meeting with a different surgeon, my breast had grown to twice its normal size. It was turning red and the nipple was being pulled inward. I freaked over what was happening to my body, and the only way I knew how to deal with it was to throw myself into my work as a faculty director of many programs at the local community college. Everyone deals with their cancer diagnoses differently, and for me I think I just walked through my diagnosis and treatments in a daze.
What did you know about inflammatory breast cancer before you were diagnosed with it?
I had never heard of IBC, and it took my breath away when I looked it up on the internet. This was in 2005 and there wasn’t much research about this form of breast cancer, but the recurrence and death rate within 5 years [of diagnosis] was pretty high. I wanted to learn more, especially when my cancer metastasized 2 years later. So, I attended an MD Anderson Inflammatory Breast Cancer Clinic conference and realized that although this cancer was considered rare and aggressive, there were many women around the world who were diagnosed with this disease. At the conference I met a nurse, Ginny Mason, who told me about the IBC Research Foundation.
Why did you want to get involved with that foundation and other advocacy and volunteer efforts, including LBBC?
I wanted to educate other people about this type of breast cancer that not only I didn’t know about, but it seemed like the medical community didn’t know much about either. I thought I would be an advocate, but I needed to learn more about how breast cancer works. So I signed up for a National Breast Cancer Coalition training program. I took the initial weekend course first and loved it. A few years later, I signed up for the week-long program. I also sent a video on IBC to all my colleagues at the college as well as other colleagues at other educational institutions.
Many people had never heard of IBC, which is why so many women were dying from it — especially African-American women, who seemed to be affected at higher rates than women of other racial populations. And people thought you had to have a lump to have breast cancer and didn’t know that IBC often can’t be detected with a mammogram. Many doctors had never seen a patient with IBC so initial diagnoses were often wrong. I wanted to help spread the word, so I started working with the IBC Research Foundation. I have done this by locally giving speeches about my personal story and being supportive to women who were referred by medical personnel or the IBC Research Foundation staff.
I also have had a couple of match calls from LBBC’s Helpline with women who have either been diagnosed with IBC or think they have it.
How does it make you feel to take those calls and help those people learn more about the condition? What do you hope they take away from those calls?
It is very rewarding to know that my story with IBC has helped give others hope. Most women are super surprised that I have had metastatic breast cancer for 10 years and that I take chemo and now a targeted therapy. Callers’ “thank you so much” makes me feel that they will sleep better that night and that puts a smile on my face!