The IBC Network Foundation
The IBC Network Foundation was formed out of the efforts of Terry Arnold. After her diagnosis with Triple Negative Inflammatory Breast Cancer it became a mission to educate everyone she could persuade to listen to her about IBC. As naturally as walking along a path, each step lead her to the conclusion that we could do more, that we must do more. It was clear we needed a very proactive foundation that would fund research and foster education for inflammatory breast cancer.
A note to our readers,
After my diagnosis of Triple Negative Inflammatory Breast cancer in the summer of 2007, I scoured the internet looking for any and every thing on Inflammatory Breast Cancer. The lack of information of a cancer first written about over 200 years ago was shocking. In the process, I started meeting women with this disease. Realizing IBC was not as rare as one might think, I felt more called into action than ever before. I had been pushing for IBC education, writing anywhere I could get published and it seems my name was being circulated as someone who wanted to champion for this disease and the people impacted by it. That is how Lori Grennan came into my life.
Lori was a young woman I met in my quest to do something, anything to improve the landscape for women diagnosed with Inflammatory Breast Cancer, IBC. Little did I know where a simple facebook message, “Hey, I hear you live in Houston. Can we meet?” would lead.
Please read the rest of the story of my meeting with Lori and you will see how this inspired the formation of The IBC Network Foundation.
Inflammatory Breast Cancer (IBC)
IBC is a very aggressive more rare for of breast cancer, in which cancer cells block lymph vessels in the skin of the breast. This type of breast cancer is called “inflammatory” because the breast often looks swollen and red, or “inflamed.”
Mammograms tend to miss IBC, as it is webby and scattered in the breast like cotton candy, making it difficult for a mammogram to read. About 10% of women with IBC do have a lump, but with the other 90% not having a readable lump, you can understand why we use the tag line, "No Lump, Still Cancer."
IBC progresses rapidly, often in a matter of weeks or months. The earliest IBC can be diagnosed is stage three, so if a women is having signs of IBC, a visit to physician to rule it out needs to be arranged as soon as possible.
There is a quick check list of symptoms of IBC.
Inflammatory breast cancer symptoms may include:
• Breast swelling, where one breast is suddenly larger than the other
• Breast that feels warm to touch and may look infected
• Itching or shooting pain
• A dimpling of the breast skin that looks like an orange peel (peau d’orange)
• Thickening of the skin
• Flattened or discolored nipple
• Swelling in underarm or only on one side of neck
• Might feel lump, however lumps are not common in IBC