Terry Arnold has always identified as an advocate. “It’s my way,” she says. When she was younger, she helped establish the first rape crisis program in Fort Bend County, Texas. She is also a founding member of a center that works on missing children’s cases, often partnering with FBI task forces.
“I always joke that I was doing it all with a baby on my hip,” says Terry, who raised five children with her husband.
So it is no surprise that being diagnosed with inflammatory breast cancer (IBC), a rare and deadly disease, propelled Terry into her next chapter of advocacy work. “I was actually misdiagnosed for four months,” Terry says. “I was very fortunate to be alive at all.”
Her treatment regimen, which lasted from 2007 to 2008, was brutal but ultimately successful. Soon, her phone rang frequently with calls from other women with IBC who wanted her advice. Meanwhile, she became increasingly 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, and not one of the girls was over 40, all with IBC,” Terry says. “I couldn’t take it. I reached out to 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?’ ”
Without a clear path to IBC advocacy, Terry turned to Wendy Woodward, her radiologist at University of Texas MD Anderson Cancer Center, and asked how she could help. Wendy said her team needed $30,000 to research treatment of pleural effusion symptoms in IBC.
Terry told Wendy, “I’ll give it to you,” and as she walked out of the office, she thought, “My God, I just promised to raise $30,000. I don’t have $30,000!”
But Terry joined forces with her friend and fellow patient Lori Grennan, who was living in Ohio and would later pass away from IBC. Together, they asked everyone they knew to donate $25 each. They raised $30,000 in six weeks.
A new IBC Network for patients, researchers, and doctors
Soon after the success of this first campaign, Terry decided to officially start a 501c3 nonprofit and founded the IBC Network, an all-volunteer charity that facilitates sharing of information about IBC and funds new research.
The IBC Network describes IBC 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, without a telltale lump, women with IBC are often misdiagnosed—like Terry was. Part of the IBC Network’s mission is to educate women and the medical community about the disease. Terry emphasizes two points: 1) you don’t have to have a lump to have cancer, and 2) any suspicious change that happens 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,” Terry says.
The IBC Network also has a major focus on helping researchers raise much-needed funding 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 convince conventional funders to support them.
In the beginning, Terry says, the IBC Network had to knock on doors to find projects to fund. Now, researchers are coming to them. Since it was founded in 2012, the organization has raised almost $700,000 (with an average donation of $30) to fund more than 10 research projects, including two clinical trials.
“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,” Terry says. “So we’re trying to hit the science at a really deep level.”
Because it is a charity, the IBC Network can choose to fund research that pharmaceutical companies would dismiss. For example, the organization is funding 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,” Terry says. “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.”
Terry says that, while she is grateful to be able to be able to do the work she does, it’s not always easy to lead the IBC Network. “Sometimes it’s very painful, and I lose a lot of good friends,” she says. “And it’s frustrating to think about how long it will take to make all the changes we want to make.”
But “hope always” is her motto. “I sign every letter that way,” she says. “Do not 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.”
Finding hope and support after diagnosis
Cancer patients often draw hope from patient support groups, but after her diagnosis, Terry had to create her own support group almost from scratch. “I had friends that were good and helpful to me,” she says, “but they were very confused because they had the impression that nobody dies from breast cancer anymore.”
After some time, Terry was able to get together with seven other women who also had IBC and start a support group. Today, with the help of Facebook, that group has grown to include more than 500 women around the world.
“I strongly encourage new IBC patients to get into a good support group specifically for IBC,” Terry says. “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, Terry recommends the IBC Network’s app, which guides the user through information on IBC diagnosis and treatment, as well as listing clinical trials that are enrolling IBC patients. “The app is like a friend walking you along,” she says.
Terry’s personal experience with IBC has also given her a unique perspective on facing IBC diagnosis. “Women often don’t want to inconvenience anyone, whether it’s to travel to get special care or to find childcare while getting radiation,” she says. “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, Terry says, is to pause and reevaluate your responsibilities after diagnosis. Over the years, whenever she and her husband have had a big life change—such as a new baby or a new band gig (her husband is a musician)—they’ve assessed whether they needed to drop or adjust any responsibilities to accommodate the change.
Terry recommends a similar exercise for newly diagnosed cancer patients. After diagnosis, “you want to keep things normal and plough through, but that’s not realistic,” she says.
“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?”
Then, she says, “you’ll be armed for what you need to do.”
Learn more about the IBC Network and read all about the research projects it funds at https://www.theibcnetwork.org/. You can also follow the organization on Facebook or follow Terry on Twitter.