Woman shares first symptoms of rare cancer she was diagnosed with while in best shape of her life
A woman who was in the best shape of her life before being diagnosed with a 'rare' form of cancer has spoken out about her experience.
Lindsay Barad had not long completed her fourth marathon when she was given a shock cancer diagnosis in December 2021.
She discovered she had appendix cancer - believed to affect one to two Americans per million every year, according to the National Cancer Institute (NCI).
The appendix is a small organ beneath the lower right abdomen, responsible for producing and storing good microbes for the human gut, as per News Medical.
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Despite being considered 'rare', a recent study found diagnosis' of the disease have tripled in 41 to 49-year-olds, and quadrupled in 36 to 44-year-olds in the US.
Lindsay told UNILAD it's 'hard to say exactly when' her symptoms began, as she had been dealing with gynecological pain and discomfort 'for years'.
"It’s difficult to say when things started to get worse. That’s the tricky part about appendix cancer, by the time it’s discovered, it could’ve been silently growing for a long time."
Initially, Lindsay says her symptoms were brushed off as 'normal' menstrual cramps.
"I self-diagnosed with endometriosis, but doctors told me that even if it was, there wasn’t much they could do. It took a lot of self-advocacy to finally get the right diagnosis."
When Lindsay was finally offered an ultrasound before having an IUD placed - a doctor's attempt to deal with her on-going symptoms - she jumped at the chance, but admits cancer 'didn't cross her mind'.
Speaking of her initial symptoms, Linsday explained: "Most of mine were gynecological: painful menstrual cramps, heavy bleeding, persistent bloating. In the months leading up to my diagnosis, I started peeing more than usual, which was another red flag.
Other common symptoms, Lindsay explains, include bloating, abdominal discomfort, nausea and what’s sometimes referred to as 'jelly belly' - when a protein called mucin builds up and causes the abdomen to swell.
"Some people look nine months pregnant before they’re diagnosed," Lindsay recalls.
During Lindsay's ultrasound, an ovarian cyst was found. "It turned out that my ovarian cyst was so large, it was pressing on my bladder and taking up space, no wonder I constantly had to pee," Lindsay said.
When surgeons went to operate on the cyst, they discovered a tumor on Lindsay's appendix, secreting mucin into her abdomen. This turned out to be stage four appendiceal cancer.
The way this cancer manifests varies; it's often found by accident during surgery for something else, like an appendectomy or hysterectomy.
Lindsay was diagnosed with LAMN - low grade appendiceal mucinous neoplasms - which, despite its name, can still be dangerous if not caught in time.
"LAMN can grow slowly, but if the appendix ruptures or the tumor breaks through the appendix wall - which is what happened in my case - then cancerous cells can spread throughout the abdominal cavity," Lindsay explains.
"These cells produce mucin, a thick, jelly-like substance that accumulates in the abdomen. This condition is also known as pseudomyxoma peritonei, or PMP."
It was December 2021 when Linsday had laparoscopic surgery to remove her ovarian cyst, when her appendix cancer was discovered.
In March 2023, she underwent an eight-hour CRS/HIPEC - dubbed the 'Mother of All Surgeries' - to clear remaining tumors and microscopic cells, remarkably preserving her uterus and avoiding the need for a stoma bag.
Recovery was grueling, with surgery inducing menopause and months of pain, fatigue and other side effects like hair loss.
In August 2023, Lindsay had a hernia caused by the surgery repair. This allowed her oncologist to also check directly for any cancer recurrence.
Now, she is in a 'watch and wait' surveillance phase after no evidence of disease (NED) was found.
"With appendix cancer, we don’t use terms like 'cured' or 'remission' because there’s always uncertainty about lingering microscopic disease," Lindsay explained.
She must now undergo annual CT scans and blood tumor marker tests to monitor for recurrence, explaining: "LAMN has a high chance of slow recurrence, which is why I will be monitored for a minimum of 10 years."
"I no longer believe in what defines a rare cancer - in other words, I don’t think all rare cancers are actually 'rare'," she adds. "I believe appendix cancer is far more common than we think. It’s often overlooked, misdiagnosed, or mistaken for other conditions."
If you have any concerns, contact a medical professional.
If you’ve been affected by any of these issues and want to speak to someone in confidence, contact Macmillan’s Cancer Support Line on 0808 808 00 00, 8am–8pm seven days a week.
Ellie Kemp