A mum is living with an “invisible” cancer that can’t be treated – because it isn’t growing fast enough.
Kerie Ivory has small bowel neuroendocrine tumours that have spread to her lymph nodes, liver, spine and rib.
But the 52-year-old has been told she must wait for the tumours to grow larger before further treatment can begin.
Neuroendocrine tumours are often described as slow-growing and difficult to detect, meaning patients can live with them for years before diagnosis.
“It’s hard living with a slow-growing, creeping cancer,” Kerie, from Buckinghamshire, said.
“I am constantly waiting for the tumours to grow big enough to get treatment that is appropriate for me.
“It’s devastating knowing I have cancer and we are not treating it.
“A lot of other cancers have the kitchen sink of treatments thrown at their cancer.
“I’m forced to live with this disease rather than eradicate it.
“My children have found it hard to accept.
“They understand it’s never going away and that at times it will grow and need treatment.”
Doctors believe Kerie may have been living with the cancer for four to four-and-a-half years before it was finally discovered in 2012.
Kerie’s first symptom was a persistent cough, which was repeatedly misdiagnosed as rhinitis, asthma, reflux and post-nasal drip.
Despite returning to her GP again and again, she was told that she did not have cancer.
Blood tests later showed she was anaemic, as reported by Need To Know.
As her condition worsened, Kerie developed severe bowel symptoms, and was diagnosed with irritable bowel syndrome.
Eventually, she was referred for a colonoscopy.
She said: “I kept going back and forth to my GP, who dismissed my symptoms.
“By then I was so fatigued I was on my knees.
“I had to choose whether to eat or have a shower.
“When they found I was anaemic, I wasn’t convinced this was the only thing wrong with me.
“I thought, ‘I am a healthy young woman, this cannot be it.’
“And then my bowel symptoms got worse.
“My stomach would be flat in the morning, then over the day it would balloon.
“I looked five months pregnant by the evening
“Finally, I was referred for a colonoscopy, during which the scope couldn’t get through – there was a tumour on the ileocecal valve which caused bowel obstruction.
“It was a relief to know that something had finally been found. The subsequent MRI found enlarged lymph nodes.”
Since her diagnosis, Kerie has undergone numerous major surgeries, including the removal of lymph nodes, sections of her small and large intestine, her ileocecal valve and appendix, part of her liver and her gall bladder.
But recent scans have shown new lesions appearing in her liver, spine and rib.
For now, she must endure regular scans and hope the cancer doesn’t suddenly accelerate.
In 2022, Kerie was “devastated” to have to give up work due to crippling fatigue caused by the cancer.
She added: “I have to prepare myself for more scans and wait to see if these lesions grow.
“I cannot relax knowing there are new tumours forming.
“I also have to limit what I do every day.
“Sometimes it may only be one thing in a day. It can catch me unawares, too.
“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.
“It’s these little things people take for granted.”
