Just over eight years ago, I was told “We are sorry, but it is most likely too late.” This came after four months of hearing, “There is nothing seriously wrong.” What a jump. A mind-stretching leap from “Not to worry” to “Oh my, you have an out-of-control cancer that most physicians have never heard of, and treatment knowledge is limited.”
When I was first told I had Triple Negative Inflammatory Breast Cancer (TN IBC), I went through a range of emotions, reactions and coping skills. I remember telling my doctors to “chop me up and figure this out, because this shouldn’t have happened to anyone!” Four months of being misdiagnosed by five doctors, in a time that there is daily conversation regarding breast cancer, was just unacceptable in my mind.
I felt like I was walking on quicksand. Nothing was as I would have expected it. Inflammatory Breast Cancer (IBC) is not typically found on a mammogram. Outward physical signs are the first clue and at that point the cancer is a stage 3. Life expectancy is less than 50% to make it to five years, and my diagnosis of TN IBC, a double whammy. I learned quickly that IBC was uncharted territory. Although the disease was first written about 200 years ago, and is viewed as the most fatal of all the breast cancers, it did not even have a medical encoding number. There were no textbooks to teach breast specialists about IBC. I lobbied the state of Texas. I wrote guest posts in newspapers and tried to get cancer publications to feature IBC. I have a special place in my heart for Angela Long and Breast Investigators because they were the first cancer-focused publication to allow me to write a guest article on IBC. Thank you Angela for caring and believing in my mission.
The list went on with needs unmet and with each visit to MD Anderson’s Morgan Welch Clinic, I was meeting yet another woman in need.
And that is what really got to me.
The women were so young, in their 20’s and early 30’s and many had to fight a disease that they hoped and prayed would not be part of their life.
I felt I was faced with an injustice. I just could not look away, especially after meeting Lori.
Lori Grennan was a young woman I met in my quest to do something, anything, to improve the landscape for women diagnosed with IBC. Little did I know where a simple Facebook message “Hey, I hear you live in Houston, can we meet?” would lead.
My passion had a face and a focus now. One thing led to another, and the power of one became the power of many. A charity was formed, The IBC Network Foundation, and within a few months we funded our first clinical trial.
The quicksand was deep and engulfing but we were finding a foothold. The lack of research was just shocking for IBC and really not all that impressive for Triple Negative Breast Cancer either.
Almost NO funds go to IBC and very little to TN. Because of this, I have devoted my time to educating the lay community about IBC and TN and raising funds for research via a foundation. In the last almost 4 years, our all-volunteer-run grassroots charity has funded $540,500 of research and by July 2016, we will fund an additional $100,000, putting us well over the half-million dollar mark. We support the IBC International Consortium in their efforts to foster and fund research. We now have a sister charity in the United Kingdom. We have also developed the first app for Inflammatory Breast Cancer, a huge milestone. This app is available free on Itunes or googleplay. It helps educate patients, gives support to the medical community, and has a focus on promoting clinical trials.
I am often asked about how it feels to be a survivor. Personally, I don’t like that term. I am surviving I say. Not until we stop cancer by funding research will I celebrate my survivorship with others. Until we reduce a death rate of 40,000 women’s lives taken by breast cancer in the US alone, with the largest percentage of those deaths due to Inflammatory Breast Cancer, I will not rest. I hope you join me by supporting our work at the IBC Network Foundation.
Diagnosed TN IBC summer of 2007, founder The IBC Network Foundation