Interview with Terry Arnold, Founder of The IBC Network Foundation
How did the IBC Network Foundation come to be?
I was diagnosed with Inflammatory Breast Cancer in 2007. I was actually misdiagnosed for four months, and am very fortunate to be alive at all. After I completed treatment, my phone rang frequently with calls from other women with IBC, wanting to connect. Meanwhile, I was becoming aware of the lack of adequate IBC education for both doctors and patients, as well as the lack of funding for IBC research.
I hadn’t been that long out of treatment when I had gone to four funerals in six weeks, all for women who had IBC, and not one of the women was over the age of 40. I couldn’t take it. I reached out to various organizations, but nobody wanted to talk about IBC. They’d say, “It’s too rare, they all die, there’s no early detection, what do you want us to do?”
About that time I meet a young woman, a family doctor from Ohio. Her name was Lori Gill Grennan. She had come to MD Anderson to continue her care for IBC. I knew her well from being a member in the support group I was running, so we met in person. She strongly encouraged me to start a charity to fund IBC research.
I didn’t know what to do, so I asked Wendy Woodward, my radiologist at the University of Texas MD Anderson Cancer Center, how we could help. Wendy said her team needed $30,000 to research treatment of pleural effusion symptoms in IBC.
I said, “I’ll give it to you,” and as I walked out of the office, I thought, “My God, I just promised to raise $30,000. I don’t have $30,000!”
I told Lori of my meeting with Dr. Woodward and she agreed this needed to happen. So I filed the paperwork for the 503c1 to be formed and the first Hunt for Hope was held in Ohio. We asked everyone they knew to donate $25 each. After six weeks, we had the $30,000.
When we saw the fast response and the ownership donors felt, we are onto something. People liked the fact that the IBC Network Foundation was an all volunteer ran charity, that the funding was focused on research.
What do you want people to know about Inflammatory Breast Cancer?
IBC is described as a rare and very aggressive disease 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.’
Because it looks different from other breast cancers, and tends to present without a telltale lump, women with IBC are often misdiagnosed, like I was. Part of the IBC Network Foundations’s mission is to educate women and the medical community about the disease. We emphasize two points: 1) not all breast cancers present with a lump, and 2) any sudden changes that happen to just one breast should be checked out.
Women dismiss IBC symptoms in themselves because it’s not what we’ve been taught, and doctors dismiss it because it’s not what they’ve been taught.
What does the IBC Network Foundation do?
Our major focus is on raising funds for new projects to improve IBC detection and treatment. Because of the rare and aggressive nature of the disease, it is often very difficult for IBC researchers to be considered for grant funding.
In the beginning, we had to knock on doors to find projects to fund. Now, researchers are coming to us. Since it was founded in 2011, the organization has donated over one million dollars to fund more than 10 research projects, including two clinical trials. We filled for the 501c3 and were approved in August 2011. The first funding was April of 2012 for that particular project – a project has to be organized before we can fund it – and we have donated from 2012 to 2019. Our total funding released for research since 2012 is $1,344,360.54
There’s so much we don’t know about IBC; what stage I or II looks like, why it’s so aggressive, what the drivers are behind it. So we’re trying to hit the science at a really deep level.
Because we are a charity, the IBC Network Foundation can choose to fund research that pharmaceutical companies would dismiss. For example, the organization funded a clinical trial testing the use of statins in preventing recurrence, a major issue in IBC.
Statins are off-patent, so there’s no money in it. To be able to take an off-patent drug that we know has low toxicity and science has shown could be helpful, and repurpose it, is a niche that pharmaceutical companies don’t want to fill, but we can.
How does The IBC Network Foundation support patients?
After my diagnosis, I had friends that were kind and helpful to me, but they were very confused because they were under the impression that nobody dies from breast cancer anymore. People didn’t understand why I had to go through such a demanding treatment plan. After some time, I was able to get together with seven other women who also had IBC, and we started a support group. Today, with the help of Facebook, that group has grown to include more than 1,000+ women in the United States alone and have groups in other countries.
I strongly encourage IBC patients to get into a good support group specifically for IBC. IBC is different; our treatment is different, our follow-up is different, so you need information that’s unique to you.
In addition to an IBC-focused support group, we have the IBC Network Foundation’s app, which guides the user through information on IBC diagnosis and treatment, as well as listing clinical trials that are enrolling IBC patients.
What are your recommendations for patients newly diagnosed with IBC?
Women often don’t want to inconvenience anyone, whether it’s to travel to get special care or to find childcare while getting radiation. But this is a nasty disease, and it’s really the time to put yourself at the front of the line to get the best expert care.
Part of putting yourself at the front of the line is to pause and reevaluate your responsibilities after diagnosis. Assess whether you need to drop or adjust any responsibilities to accommodate the change. After diagnosis, you want to keep things normal and plough through, but that’s not realistic. Fear can steal your days more than cancer itself sometimes. So what can you do to give you joy? How can you shift responsibilities so you can focus on what you need to do for your illness? And who can you surround yourself with who’s going to support you and pick up the slack for a while?
“Hope always” is my motto. Don’t let cancer steal your hope. I don’t think it’s attitude that cures you, but this day belongs to you. Don’t lose this day.