SHOCK TWIST Mum-of-three, 42, with ‘chest infection’ becomes first person in the world to be diagnosed with ultra-rare cancer
A MUM-of-three was told she had a chest infection after she struggled to breathe.
But after the antibiotics she was given failed to ease her suffering, Alison Varley, 42, was diagnosed with a "rare upon rare" cancer.
The mum from Ossett, West Yorkshire, is thought to be be the first person in the world to be diagnosed with this form of the disease.
She was referred to three different hospitals after her diagnosis of goblet cell carcinoma in 2021 - just six months after the birth of her second daughter.
As the genetic makeup of Alison's cancer is unlike any seen before, she said doctors are "struggling" to treat her.
The mum-of-three first underwent immunotherapy, which caused her cancer to grow and has just started her first round of chemotherapy as she continues to battle the disease.Her friend Adam Billington has set up a fundraiser to help the family with day-to-day costs.
'There is no one with my cancer'
Months after the birth of her second daughter Delilah, Alison went to hospital after struggling to breathe and suffering what she thought was a chest infection.
She told YorkshireLive: "I thought I had a chest infection and couldn't breathe very well. I went to the doctors and was given a week's course of antibiotics.
"They didn't touch it. I went back and had three more days and my husband said to call 111 and they sent an ambulance.
"They did a CT scan and found five litres of fluid in my right lung. They tried to drain the fluid and did a CT scan and found a large mass on my ovary."
Doctors said Alison's cancer had started in her appendix before spreading to her bowel, ovary, and rectum.
Alison said: "It's rare upon rare upon rare. There is no one with my cancer. The genetic make-up of it is like no other in the world.
"There are people with goblet cell, but not the genetic make-up.
"That's why they're struggling with me because there is no one in front of me [with it.]"
Gruelling treatment
Under the care of St James's University Hospital in Leeds, The Christie in Manchester, and Basingstoke and North Hampshire Hospital, Alison underwent immunotherapy, which she said caused a growth in her cancer.
Immunotherapy is a treatment that uses the immune system to fight cancer, helping it recognise and attack it.
It can be given on its own or in combination with other treatments.
Once doctors noted a growth in her cancer, Alison said they stopped the immunotherapy "immediately".
She underwent no treatment for nine months as doctors didn't want to aggravate the disease, in which time the cancer only grew "slightly".
But after experiencing bowel issues, Alison went back to hospital in March this year.
A colonoscopy revealed that the tumour had grown and spread further into her bowel.
Alison explained: "An oncologist came to see me and he said the cancer has grown and he thinks it is in the bowel.
"It has grown quite a bit which is shocking. I only had a colonoscopy in November and he said it was clear and fast forward to March...
"They arranged to put a stent in my bowel to open it up."
The stent expands and holds the bowel open so poo can pass through it again, staying in place to keep the bowel open.
Following the procedure, doctors next step was to start treating Alison's cancer with chemotherapy, which should last for the next three months.
Alison, who is also mum to Charlie, 20, and Daisy, four, with husband Matthew, said: "I'm absolutely terrified. I'm scared for my kids.
"It's worrying because I'm going to be trying chemotherapy. I don't know if it's going to work."
She said her youngest daughter Daisy had been asking why she was still at the doctors and not coming home.
A helping hand
Alison retired after her diagnosis and receives a pension and personal independence payment [PIP] - which she said she was initially rejected for because it was said she was "not poorly enough."
To help the Varley family out with day-to-day costs, the mum's friend Adam set up a crowdfunding campaign which he hopes will ease their financial burden.
Asked about donations, Alison said: "It really does mean the world to me. I appreciate every last one of them.
"When I'm poorly and curled up in my bed because I can't move, my kids will have food in the cupboards and I can put the heating on when it's cold."
The mum said she recently went "extra" for little Delilah's fourth birthday, as she doesn't know if she'll be around for a next one.
Alison said: "It's hard not to talk about dark things when you're in my shoes.
"I don't know if this is going to be my last Christmas or birthday with them. I don't know what is going to happen.
"They said it [the cancer] was stable but all of a sudden it's growing. I don't understand."
What is gobelt cell carcinoma?
GOBLET cells line the internal organs and make mucus.
Goblet cell carcinomas are a type of neuroendocrine tumour (NET) and start in the appendix.
Accoridng to The Christie NHS Foundation Trust, it only affects one to two people per million.
It's usually found unexpectedly and diagnosed during surgery for other reasons, typically an appendicectomy for suspected appendicitis.
It may also present as abdominal pain or swelling.
As the cancer can at first cause no symptoms, it can be difficult to detect.
A few patients have pain in the abdomen and some notice an increase in the size of their abdomen, The Christie said.
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