Survivor raises awareness of IBC
Just over eight years ago, Terry Arnold 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 she was first told she had Triple Negative Inflammatory Breast Cancer, she went through a range of emotions, reactions and coping skills.
Flashing back to the late 1970s when her grandfather was diagnosed with lung cancer, she remembered her family whispering the “C” word. They were afraid if the word cancer came out of their mouths, it would somehow boomerang back and get them all.
Knowing how cancer staging was at that time, one can understand the fear. Exploratory surgery was common practice in determining the spread of the disease.
Arnold said, “In my cancer experience, I felt like I was walking on quicksand. Nothing was as I would have expected it to be.”
Inflammatory Breast Cancer is not typically found on a mammogram. Outward physical signs are the first clue and at that point the cancer is Stage 3. Life expectancy is less than 50 percent to make it to five years, and her diagnosis was Triple Negative Inflammatory Breast Cancer, a double whammy. She 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 felt I was faced with an injustice, I just could not look away,” said Arnold.
She lobbied the State of Texas to declare an Inflammatory Breast Cancer Month. In May of 2011, the proclamation was read in the House and Senate. She formed Facebook groups and set up meet-ups with other IBC patients, even on an international level. The power of one became the power of many.
“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. I just assumed that since breast cancer was such a hot topic, that breast cancer research was well funded. To a point it is, but for the ones that are most fatal, like IBC and TN, the void is wide and deep,” Arnold explained.
Almost no funds go to IBC and very little to TN. Because of this, she has devoted her time — as a volunteer — to educate the lay community about IBC and TN and also to raise funds for research via a foundation she started, The IBC Network Foundation.
In the past three years, the grassroots charity has funded $330,000.00 to research and by the end of this year it expects to reach the half million dollar mark. The volunteers have been invited to be a part of the IBC International Consortium to help foster and fund research. There is also a sister charity in the United Kingdom.
The IBC Network recently held its first gala in honor of an IBC patient. The theme was “Wish Granted. Hope Lives,” and the supporters look forward to more stellar events like this as the foundation grows to meet the needs of the dedicated researchers.
“People ask me, do I feel victorious? Like a survivor? A warrior who slew her dragon? Some days I do,” Said Arnold. “But, some days I feel worn down by the mountain of need in the cancer world. Mostly, I feel grateful. My hope is to continue the pink mission started by others before me and direct more funds to research. We need research. And, one day we all can feel victorious when we truly have an answer for this because out of the 40,000-plus women who die each year of breast cancer in the United States alone, the largest percentage of those deaths were due to Inflammatory Breast Cancer.”