In February 2022, Neusha Raffijandi was diagnosed with advanced bile duct cancer. While undergoing chemotherapy that spring, she discovered that her husband had joined the UCI Anti-Cancer Challenge to honor her fight.
Family and friends rallied behind her, making "TeamNeush" the biggest group to participate in last October’s annual ride, run, walk event, raising thousands of dollars to support research at the UCI Health Chao Family Comprehensive Cancer Center.
“I'm excited to join again this year,” says the 34-year-old Aliso Viejo woman, who continues to fight the rare disease, a subtype of bile duct cancer called intrahepatic cholangiocarcinoma that is seldom seen in people under age 65.
Each year, about 12,000 Americans, or 1 in 100,000 people, are diagnosed with bile duct cancers, according to the National Organization for Rare Disorders. Only about 3,000 of these cases involve bile duct tumors within the liver, itself, and the five-year survival rate is very low.
Raffijandi’s journey began 18 months earlier in the summer of 2020, when she first experienced occasional but intense abdominal pain. She consulted with community physicians and underwent several tests, which were inconclusive. A busy event producer for a leading agency, she brushed it off because the attacks were infrequent.
'Shocked' by diagnosis
In early 2022, however, unbearable abdominal pain landed her in the emergency department at a local hospital. A new CT scan revealed about 50 cysts in her liver. After reviewing her results, a gastrointestinal specialist told her that the cysts were bile duct tumors that had spread into her liver as well as her lungs.
"When the doctor said 'cancer,' I was shocked,” Raffijandi recalls. “It's not at all what I expected but I looked at her with a straight face and asked 'Okay, what are my next steps?'
“It wasn't until I told my husband, Anka, and saw his reaction that I started to tear up. I knew that this was going to be just as hard for my family as it would be for me. I needed to keep my head on straight and stay positive and focused, for all of our sakes."
Her family encouraged her to go to the Chao Family Comprehensive Cancer Center, which has experts in all types of disease. There, she met UCI Health medical oncologist Dr. Jennifer B. Valerin, who specializes in gastrointestinal and hepatobiliary cancers.
“I knew that I had a fighting chance to pull through with Dr. Valerin by my side,” she says.
Soon after starting treatment with a combination of chemotherapy and immunotherapy in March 2022, she was delighted to learn that her husband had joined the UCI Anti-Cancer Challenge and created TeamNeush.
Raising awareness and support
Every dollar raised by participants in the UCI Anti-Cancer Challenge goes directly toward research at the cancer center. Since its inception in 2017, the annual ride, run, walk event has raised $3.7 million and provided grants for 100 innovative research efforts that are poised to revolutionize cancer care, including an early phase clinical trial to combat gastric cancer and a pilot project to find a switch to turn off tumor growth. Those seed grants, in turn, made it possible for awardees to garner more than $33 million in additional grant funding, accelerating their research efforts.
“I loved learning that 100% of the funds donated went to cancer research at UCI. It felt like it was going to me directly,” says Raffijandi.
Determined to raise awareness, she began talking about her cancer journey on social media, sharing her experiences with chemotherapy and other treatments. As she posted about the ups and downs she faced along the way, more and more friends and family members signed up to support her.
By Challenge Day last October, TeamNeush was 89 members strong, earning the “largest team” award and raising more than $20,000 for research at the only National Cancer Institute-designated comprehensive cancer center based in Orange County, one of only 53 in the nation.
“How amazing is it that so many people rallied with me to bring awareness and raise funds for cancer research,” asks an incredulous Raffijandi, who has participated in two clinical trials under Valerin’s care.
She is currently undergoing chemotherapy in hopes of halting progression of the disease.
“This is why research for intrahepatic cholangiocarcinoma is so crucial,” Valerin says, noting that the median overall survival rate is about one year.
'Neusha is a fighter'
"But these are just numbers,” the oncologist says. “Neusha is a fighter. Here she is, 18 months into her disease course, spending all day at Disneyland recently and participating in the UCI Anti-Cancer challenge with her loved ones. That is what success looks like.”
Raffijandi sent out word that TeamNeush will participate in the seventh annual UCI Anti-Cancer Challenge on Oct. 7 at Aldrich Park on the university campus in Irvine. As of mid-August, 125 people already have signed up.
“Your support, big or small, virtual or in-person, means so much to me personally, but also to the people like me that are still in this fight,” she says.
“Together, let's make a real impact in the fight against cancer and crush it!”
Learn more about the UCI Anti-Cancer Challenge or register at anti-cancerchallenge.org ›