By Jacqueline Howard, CNN
(CNN) — The pain was so sharp that Chris Williams took himself to the hospital.
It was a Tuesday evening in September 2021 when Williams started to feel throbbing abdominal pain and nausea. By the next morning, it had gotten worse.
“I had to go to the ER,” said Williams, who lives in Brooklyn.
At the hospital, he was diagnosed with appendicitis and had his appendix surgically removed. About a week later, he met with his medical team to get the staples removed and discuss next steps – and that’s when he received shocking news.
“They found a tumor sitting on my appendix, and they biopsied that tumor and determined it was cancer,” said Williams, who was 48 at the time.
“It was actually a blessing,” he said. “This was really just a godsend, in my eyes, and a blessing for me to detect the tumor – for the tumor to trigger my appendix to almost rupture for them to find it – because later on, they discovered it was stage III. Had it stayed in me for a while longer, it would have been stage IV,” which is the most advanced stage of cancer and more difficult to treat.
Williams, who is now cancer-free after finishing treatment in November 2022, is among a growing group of appendix cancer patients in the United States who were diagnosed at a young age.
‘Alarming and worrisome’
The appendix, which plays a role in supporting the immune system, is a small pouch-like organ that is attached to the large intestine at the lower right side of the abdomen.
Although cancer of the appendix is rare – typically, it’s estimated to affect about 1 or 2 people for every 1 million in the United States each year – diagnoses are rising sharply among Generation X and millennials, according to a new study.
Compared with people born from 1941 through 1949, incidence rates of appendix cancer have more than tripled among people born between 1976 and 1984 and more than quadrupled among people born between 1981 and 1989, according to research published this week in the Annals of Internal Medicine. These increases in incidence were found to have occurred from 1975 through 2019.
“It’s alarming overall,” said Dr. Andreana Holowatyj, the lead study author and an assistant professor of hematology and oncology at Vanderbilt University Medical Center and Vanderbilt-Ingram Cancer Center.
“We’re seeing some of these generational effects for cancers of the colon, the rectum, the stomach, and so that’s one of the reasons why we were curious to explore this in rare appendix cancers. But nonetheless, the rates and trends which we observed were alarming and worrisome,” she said.
The researchers on the new study – from Vanderbilt University Medical Center, West Virginia University and the University of Texas Health Science Center – analyzed data on 4,858 people in the United States, 20 or older, who had been diagnosed with appendix cancer between 1975 to 2019. The data came from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program database.
The data was separated into five-year age groups and showed rising rates in appendix cancer incidence by birth cohort, particularly among people born after 1945, the researchers wrote in the study.
Although the new study did not examine specifically why this incidence is on the rise, the researchers say it’s “unlikely” to be explained by advances in screening for the disease or diagnostic tools.
“There are no standardized screening techniques for appendiceal cancers. Many of them are incidentally found after presentation of something like acute appendicitis,” Holowatyj said.
Rather, the trend may be tied to “environmental exposures that may increase risk for generations now entering mid-adulthood,” the researchers wrote. And similar trends “have also been reported for colon, rectal, and gastric cancer,” suggesting that possible risk factors may contribute to gastrointestinal cancers as a whole.
For instance, obesity has been identified as a risk factor for appendix cancer diagnoses and is recognized as a risk factor for colon cancer, Holowatyj said, adding that identifying what risk factors might be driving these trends in cancer incidence could help reveal ways to prevent disease.
“The fact that we’re seeing these trends parallel across other cancers of the gastrointestinal tract does tell us, or suggest, that there may be both shared and distinct risk factors that can contribute to cancer development across younger generations in the gastrointestinal tract,” Holowatyj said.
“That’s going to be important to understand – what are those shared factors, or how do those risk factors differ, both in magnitude and absolute risk across these gastrointestinal cancer types – to help us support the development of effective prevention strategies and ultimately aim to reduce this burden or reverse these trends,” she said.
There are no specific screening recommendations for appendix cancers, but symptoms of the disease typically include abdominal or pelvic pain, bloating, nausea and vomiting – which often can mimic symptoms of appendicitis. Appendix cancer may be treated with surgery, in which the appendix is removed. If the cancer has spread, patients are often given chemotherapy.
“This is a disease where, if not caught before the appendix ruptures, tumor cells disperse throughout the abdominal cavity often,” Holowatyj said. “That’s why up to 1 in every 2 patients are diagnosed with metastatic disease” or cancer that has spread.
Rising cancers in young adults
The study showing an increase in incidence of appendix cancer among younger adults comes as no surprise to Dr. Andrea Cercek, co-director of the Center for Early Onset Colorectal and GI Cancers at Memorial Sloan Kettering Cancer Center, who treated Williams.
“We’ve known that early-onset appendix cancer is part of the bigger story of early-onset GI cancers, including colorectal cancer,” said Cercek, who was not involved in the new research.
She has seen the trend firsthand among her own patients – but it still remains unclear what specific factors may be driving these increases.
“There are a lot of suspects, including lifestyle changes, dietary changes. People talk about obesity, less activity. But there’s nothing that quite fits everyone. And then there are environmental changes,” Cercek said. “I think it’s probably some type of combination, something multifactorial, but we have not yet identified it. There is thankfully now a lot of work, a lot of research going into this.”
Despite the rising incidence, Cercek emphasized that appendix cancers remain uncommon.
“It is very rare, even though it’s rising,” she said. “However, it is an important part of this overarching story of the rise in cancer in young adults.”
‘I have everything to be grateful for’
Williams’ journey after his cancer diagnosis was not easy, he said, but he remains grateful for his care team. After he was diagnosed, he sought treatment at Memorial Sloan Kettering Cancer Center in New York, where he underwent additional surgery and received chemotherapy.
“For me, I could look at it in a couple of different ways. I could moan. I could complain. I could say, ‘Woe is me.’ Or I could be grateful that this was found and that there was a solution in terms of treatment,” Williams said. “It could have ended up being something that killed me, and because it didn’t, I feel like I have everything to be grateful for.”
Before his cancer diagnosis, Williams thought he was doing everything right. He was eating a mostly healthy diet and exercising regularly, but as a project manager at the time for the state of New York, he also was experiencing a lot of stress.
At age 42, he had his first heart attack, he said. He had a second heart attack a few weeks after his appendix cancer diagnosis. Then a third happened shortly after his surgery at Memorial Sloan Kettering Cancer Center, he said. And just last year, Williams had a fourth heart attack. Blockages were found in his heart, and he said he was treated with stenting, in which a flexible tube was placed in the arteries to increase blood flow to the heart.
“A lot of what I’ve experienced has been due to stress,” Williams said.
“My personality has been one where I internalized a lot. Especially among men, we tend to internalize a lot because we feel like we have to carry the weight of the world on our shoulders,” he said. “But in so doing, as you’re internalizing, you’re making yourself sick. That internalization leads to stress, and that can lead to heart disease, that can lead to strokes, that can lead to cancer.”
Inspired by his own health challenges, Williams has launched the Brooklyn-based nonprofit Heart, Body & Soul to connect communities of color, particularly Black men in underserved communities, with physical and mental health tools as well as increased communication with health care providers to help improve their overall health.
“We also teach them how to advocate for themselves as well because a big part of the challenges that are faced, especially when having conversations with men of color, is the concern of not being seen or heard when they get into a hospital,” Williams said, adding that he emphasizes the importance of listening to your body and having a primary care physician.
“Especially in the age where we see things happening like men and women being diagnosed at earlier ages with various diseases, I really think it’s important for us to start prioritizing putting a care team together,” he said. “We have to take a more holistic approach to how we treat ourselves and how we take care of ourselves.”
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