Breast Health Collaborative hosts IBC Research Foundation
In June, we hosted a Breast Health Collaborative meeting featuring speaker Ginny Mason from the Inflammatory Breast Cancer Research Foundation. She educated Komen Central Indiana staff, interns and grantees about IBC and the specific challenges related to this form of breast cancer.
Our mission interns Cassie and Katie reflect on what they took away from Ginny’s presentation:
We had the privilege of listening to such an amazing advocate talk about a lifelong passion. Ginny Mason, a 22-year survivor of Inflammatory Breast Cancer, started a research foundation inspired by her journey with cancer that began in 1999.
After receiving an ominous prognosis at the time of her diagnosis, Ginny began reaching out to other people who had encountered IBC. The Internet, a strange and daunting concept for Ginny at the time, nevertheless connected her to a Canadian IBC support group, as well as a man from Alaska whose wife died from IBC. Though skeptical about meeting this stranger, Ginny and her husband were determined to develop awareness about this awful disease, and flew all the way to Alaska to begin that important discussion.
With all of this inspiration, Ginny had the drive to develop a research foundation that has funded almost $300,000 in research, in addition to collecting data and information related to IBC and connecting IBC patients from all over the world with resources. Due to the vast scope of the mission, the organizers chose to not have a single geographic location for their office. Instead, the foundation has a strong online presence and Ginny works from her home office to manage relationships stretching around the world. The foundation isn’t attached to any institution or physician.
3 things we learned as young women about Inflammatory Breast Cancer:
- Early detection is not possible for this form of cancer. It is the most aggressive form of breast cancer. IBC is always diagnosed at either Stage III (when confined to the breast) or Stage IV (when it has spread to other parts of the body). IBC symptoms develop rapidly (usually within 3 months). This was a shock to us because we always thought that cancer could just be at a lower level when caught. The fact that this is so aggressive once caught has taught us to not ignore any of these signs. It’s better to be told nothing is wrong verses it being too late.
- IBC is located in the lymphatic system. IBC grows in tumor cell clusters that clog the lymphatic channels of the breast skin, resulting in a handful of characteristic symptoms. With inflammatory breast cancer, you don’t notice hard lumps. We were shocked by this statement because we always associated breast cancer with hard lumps in the breast. It highlights the importance of knowing the difference between normal fluctuations and odd changes for your own body.
- Only 1-5% of all breast cancers are Inflammatory Breast Cancer. IBC is classified as a rare disease within the scientific community and many feel that not enough hard data exists around this type of breast cancer. After learning this, we became more aware of ourselves because it is important for us to look for the typical breast cancer and this rarer form. We both have had a close family member affected by breast cancer so better understanding IBC helps us to be more aware.