PLAINFIELD CHARTER TOWNSHIP, Mich. — Three years after her brother's battle with appendix cancer, Lynette Barnard sits on her porch and shares her family's story in hopes to raise awareness of a cancer that many have never seemingly thought about.
"In August of 2021 he thought he had a hernia, and he scheduled an appointment with the doctor. However, a few days before this appointment, he ended up in the emergency room with severe abdominal pain," said Barnard as she described how her brother, who asked to remain private, was diagnosed in August 2021. "Within a few hours, they had him in exploratory surgery, and he was diagnosed with cancer. Shortly after that, they specifically told him that it is Pseudomyxoma Peritone."
It is a rare form of appendix cancer that Barnard says impacts between two to nine people out of a million. Appendix cancer is already rare in itself, with researchers saying there about 3,000 new cases in the U.S. each year.
"We'd never heard of it," said Barnard.
While her brother recovered from his surgery and later underwent chemotherapy, Barnard joined an online support group of people impacted by appendix cancer, and discovered that many across the country face very limited treatment options, and often face being misdiagnosed.
"A lot of people have to travel very far to get a doctor that's qualified, a specialist that can treat this, and we have doctors like that right here in Grand Rapids, so we are very grateful for that," said Barnard.
Dr. Andreana Holowatyj, an assistant professor of medicine and cancer biology at the Vanderbilt University Medical Center and the Vanderbilt Ingram Cancer Center, along with the Chair of the Scientific Advisory Board for the Appendix Cancer PMP Research Foundation, says it is becoming more important for healthcare providers to be familiar with this cancer, and for people to recognize that it is biologically different from colon cancer.
"Appendix cancer treatment varies based on the type of appendix cancer patients diagnosed with," said Holowatyj. "That's why it's really important, once diagnosed, to have an expert pathology review or review the appendix tumor cells under the microscope. Unfortunately, as a rare cancer, treatment options are currently limited."
Holowatyj says while treatments and patient outcomes for appendix cancer have come a long way, there is still much more research that needs to be done to better understand this cancer and for treatment to become more accessible
"Many appendix cancers are diagnosed after the appendix is burst, which means we do see a greater proportion, almost up to one in every two patients diagnosed with tumor cells that have spread, typically, into the abdominal cavity," said Holowatyj.
She also adds that the cancer is becoming more seen, as scientists have yet to fully understand why, and risk factors involved.
"One in every three patients with appendix cancer is younger than age 50 right now, and so it's important that we deliver both provider and public education about appendix cancer, because typically, symptoms of appendix cancer are general and non specific gastrointestinal symptoms."
Spreading awareness is one way Barnard gives back for the support her brother and their family received during his cancer battle, and says her brother has his own way of celebrating his full recovery as well.
"On the anniversary of his diagnosis, which was August 26, he goes on a 100 mile bike ride to celebrate his new health," said Barnard.
Available resources to lean more: