Most cancer patients hope their tumors disappear quickly, but a UK mom is actually “waiting” for her tumors to grow so she can get the treatment she needs.
“I am constantly waiting for the tumors to grow big enough to get treatment that is appropriate for me,” Kerie Ivory, 52, told Jam Press this week.
The Buckinghamshire mother of two had suffered from a persistent cough and acid reflux, and doctors diagnosed her with rhinitis, post-nasal drip and asthma.
Ivory said it took 15 months to reveal her underlying problem — neuroendocrine cancer. The rare disease, which affects over 170,000 Americans, arises from hormone-releasing cells primarily in the digestive tract, lungs or pancreas.
The tumors often take five to seven years or even longer to be diagnosed.
“It’s hard living with a slow-growing, creeping cancer,” Ivory lamented.
“It’s devastating knowing I have [it] and we are not treating it,” she added. “A lot of other cancers have the kitchen sink of treatment thrown at them — but I’m forced to live with this disease rather than eradicate it.”
Neuroendocrine tumors tend to behave less aggressively than other cancer types, affecting growth and delaying diagnosis.
Apple co-founder Steve Jobs died in 2011, at the age of 56, from a pancreatic neuroendocrine tumor. He had been diagnosed with it in 2003.
Ivory believes that she had the cancer for over four years before being diagnosed in 2012.
She has a tumor in her ileocecal valve — the muscle located between the small and large intestine — that spread to her lymph nodes, as well as tumors in her bowel.
Ivory said her symptoms were initially dismissed even as she insisted that she was a “healthy young woman” who got so tired that she had to choose whether to eat or shower.
“I was getting severe bloating, [gas] and stomach pain,” she recalled.
“My stomach would be flat in the morning, then over the day it would balloon,” she continued. “I looked five months pregnant by the evening.”
She was told to get a colonoscopy, which couldn’t be completed because the tumor was in the way.
She had to get surgery. In a grueling procedure, some of her lymph nodes, part of her small and large intestine, her ileocecal valve, appendix and a section of her liver and gall bladder were removed.
Despite the extensive operation, the problem didn’t go away.
She said she was “forced” to give up work in 2022 due to severe fatigue.
And her latest scans showed more lesions in her liver, spine and rib. Now she waits to see if they will grow.
“I have to limit what I do every day,” Ivory said.
“I went to a spa recently with a group of girlfriends and we all went to the swimming pool, but I didn’t put my head under water because if I get my hair wet, it means having to wash my hair, which will be exhausting for me.”
In the meantime, she’s working with Neuroendocrine Cancer UK (NCUK) on its campaign for World Cancer Day, which is Wednesday.
“A key part of the challenge of neuroendocrine cancer is that it doesn’t align with the common cancer narrative many expect,” said Lisa Walker, CEO of NCUK.
“It doesn’t act or look like more known cancers and unlike others, it isn’t always about recovery or decline — it often requires people to live with it for many years.”
The organization is urging people to be aware of the signs of neuroendocrine cancer, including unintentional weight loss, increasing fatigue, pain, diarrhea, bloating, gas, heartburn, asthma-like symptoms, flushing and a persistent cough.
“On this World Cancer Day,” Walker said, “we hope our report goes some way to raising awareness and achieving earlier diagnosis, so that people receive timely treatment and support that can change lives.”
