Stacie Lindsey still remembers the news like it was yesterday. It was 2005, and her brother Mark Clements sat their family down and announced that he had been diagnosed with cholangiocarcinoma, a cancer in the slender tubes that carry the digestive fluid bile through the liver.
The news was devastating, as there wasn’t much hope for recovery. The rare yet aggressive cancer wasn’t well known to many.
“There were no options,” she explains. “There was not even a standard of care for this form of cancer.”
But that didn’t stop Lindsey or her family from doing everything they could. Online research didn’t immediately turn up much. But Lindsey kept digging.
“I was searching in PubMed for articles and looking at the bottom at the references to see if I could recognize patterns and who was publishing the data so that I would know who to talk to,” she says.
For nearly a year and a half, she and her family tirelessly gathered what information they could about the rare cancer, hoping for a miracle of curing Clements. During Sunday night dinners, they’d share the research with each other. Then they’d share the research with Clements’ oncologist, who would discuss it with them. There just seemed to be something missing—and that was a network of others going through the same thing.
“I quickly realized that I needed help,” Lindsey recalls. “I needed to be able to connect with other families, other doctors.” So Lindsey talked to doctors across the country about the cancer that was attacking her brother’s body.
Bringing People Together
This was before social media, so a family member set up a website with a discussion board. Within the first month, about 20 patients from all over the U.S. were connecting with each other.
“They were all young,” Lindsey says. “I think the youngest was 21. She had just gotten married. And I think Mark might have been the oldest at that point.”
Making the connection more personal, they held conference calls and emailed each other all the time to see what treatments might be working. To offer each other hope. To figure out if anybody was having any success.
Once, on the way home from a chemotherapy appointment, Clements asked his sister, “What are you going to do when I pass away? What are you going to do with all of this information you’ve gathered?” By this time, hundreds of people were on the discussion board. And Clements’ dying wish was for the information and network to be preserved. Because other people won’t have families with hours to spend researching like his did, and “they’ll need what you’ve created.”
“So, he called his law firm and they had us come in. Mark, my dad, and I went in, and we set up a 501(c)(3). And that’s how we began.”
The Cholangiocarcinoma Foundation was officially born.
Clements’ doctors did what they could, but in the end, all the hard work didn’t equal the outcome they wanted. Clements died in 2007, leaving behind a wife and several small children.
And while they still grieve the loss of a brother, husband, father, and friend, there is one thing that Lindsey knew needed to happen—to ensure that no one else needed to navigate the journey of cholangiocarcinoma alone and in the dark.
Leaving a Legacy
Now celebrating its 15th year, Lindsey and others integral to the foundation can look back and see what they’ve accomplished in that short time.
To start, Lindsey and others involved in the foundation realized that they needed to pull in the medical community and have ongoing discussions. One of the most impactful conversations she had at the beginning of this process was with Dr. Nabeel Bardeesy, a scientist at Massachusetts General Hospital who had done significant research on pancreatic cancer. Lindsey saw him at a meeting and felt drawn to him.
“We started funding his lab, and I just felt like he was the one that to help us start a scientific advisory board and pull the scientists from across the nation together and start to talk about what we needed to do,” she says.
From that they developed a medical advisory board for the foundation. By 2010, a standard of care was developed so that doctors who hadn’t heard of the cancer would have a starting point with evidence-based suggestions. Beyond that, the foundation was offering a forum where patients from around the world could interact and ask questions.
“So, really, that’s where we started,” Lindsey explains. “I just started building a community.” Although at first, that was easer said than done. Sharing information didn’t come naturally to many academic institutions. In fact, some were competitive.
“I wanted to build a community where we can lower these barriers, where these institutions and these scientists and physicians can work together. That it’s a warm, welcoming community where the junior members can be mentored widely, not just specifically within their institution, but widely by the best in the field.”
Looking at Cancer Differently
The growth happened incrementally, but it came. People showed up and offered help. Like Lindsey explains, they’ve been building, building, building for years. And all the work has led to something pretty great.
“In the last year and a half, we have had three FDA approvals for treatments for our patients. That’s been huge for us,” she says.”
One big shift was precision medicine, or genomic testing, which is what the cells in the tumor actually look like. In looking specifically at cholangiocarcinoma cells, you can look for mutations or other things within the tumors.
“So that means that when you can identify what’s happening in the tumor, then you can develop targeted treatments to affect them,” Lindsey says. Better data means better drugs coming on the market, which means better treatment.
She adds, “We’re able to educate the patients, talk with them about getting the testing, and then they’re able to, if they choose, to participate in clinical trials. And that’s how we find solutions.”
One reason there’s a lot of discovery in fighting cancer right now is due to the scientific community engaging with the patient community. Years ago, that wasn’t the case. But now they understand that when a drug is developed, it’s a good idea to get input from the patient.
“And that’s where patient advocacy organizations can be so helpful,” says Lindsey. “Because we are trusted partners with the patients, we then become trusted partners with the clinicians and the researchers.”
Recently, Lindsey was named a finalist of the Cancer Community (C2) Awards in the category of C2 Catalyst Change. According to the organization, these awards recognize individuals and organizations who have created positive change in cancer care.
In the end, everyone wants to solve the problem of cancer and work together to find a cure. Along the way, patients and their families can have hope and community through the foundation. And that’s something Clements would be extremely proud of.
To learn more, visit cholangiocarcinoma.org.