A mother has told how doctors believe she is the only person in the world to have been diagnosed with cancer.
Alison Varley, from Ossett in West Yorkshire, said she was “terrified” and doctors were “struggling” with her unprecedented illness.
The 42-year-old starts chemo today but fears she won’t make it to Christmas, freely admitting: “I don’t know if it’s going to work.”
Ms Varley was diagnosed with a specific type of goblet cell carcinoma in 2021 after seeking help for what she thought was a lung infection that was making it difficult for her to breathe.
Antibiotics failed to help, prompting her husband Matthew to call an ambulance for her.
Alison Varley, from Ossett in West Yorkshire, said she was “terrified” and doctors were “struggling” with her unprecedented illness. The 42-year-old starts chemo today but fears she won’t make it to Christmas, freely admitting: “I don’t know if it’s going to work.” Mrs Varley, pictured with her husband Matthew and daughters Delilah and Daisy
Ms Varley was diagnosed with a specific type of goblet cell carcinoma in 2021 after seeking help for what she thought was a lung infection that was making it difficult for her to breathe. Antibiotics failed to help, prompting her husband Matthew to call an ambulance for her. Pictured is Mrs Varley with her son Charlie
Hospital tests later revealed she had fluid in her lungs – and a mass on her ovary.
Goblet cell carcinomas develop in the appendix and are thought to affect only one in a million people. They are more common in people between 50 and 60 years old.
Ms Varley said she was told about the genetic makeup of her cancer is “not like any other in the world”.
Since her diagnosis in late 2021 – just six months after the birth of her third child, Delilah – the cancer has spread to her rectum and abdomen.
Recalling the news, Mrs. Varley said: “I thought I had a chest infection and I couldn’t breathe very well.
“I went to the doctor and was given a course of antibiotics for a week. They didn’t touch it.
“I came home and had three more days and my husband told me to call 111 and they sent an ambulance.
“They did a CT scan and found five liters 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.
She added: “It’s rare on rare on rare. No one has my cancer. Its genetic makeup is unlike any other in the world.
“There are people who have goblet cells, but no genetic makeup.
“That’s why they (the doctors) have a hard time with me because there’s no one in front of me (with that.)”
Goblet cell carcinoma often affects the appendix exclusively and is usually only discovered during examinations or treatments for other conditions, such as an appendectomy or small bowel resection.
It can be treated in some cases with surgery, to remove the appendix and surrounding tissues.
In other cases, however, as the body fights the disease, a mass of fluid may form.
According to Neuroendocrine Cancer UK, chemotherapy and immunotherapy are offered when there is a higher risk of the cancer returning.
Ms Varley, who is being treated at St James’s University Hospital in Leeds, The Christie in Manchester and Basingstoke and North Hampshire Hospital, underwent surgery to remove her appendix, followed by a complete hysterectomy.
Immunotherapy was initially successful in reducing the size of the tumors in his abdomen and rectum.
But, she claimed, this triggered an adverse reaction causing the cancer to grow.
She added: “They stopped this immediately. If cancer develops during treatment, it may get worse. I was more or less put on a “watch and wait list”.
Over the course of nine months without treatment, her cancer grew “slightly.”
But since then Ms Varley has also suffered from intestinal pain. A colonoscopy last week revealed the tumor had grown further.
“An oncologist came to see me and he told me the cancer had grown and he thought it was in the intestine,” she said.
Ms Varley, who is being treated at St James’s University Hospital in Leeds, The Christie in Manchester and Basingstoke and North Hampshire Hospital, underwent surgery to remove her appendix, followed by a full hysterectomy. Immunotherapy was initially successful in reducing the size of the tumors in his abdomen and rectum. But, she claimed, this triggered an adverse reaction causing the cancer to grow. Pictured is Mrs Varley with her daughters Daisy and Delilah
“He’s grown a lot, which is shocking. I didn’t have a colonoscopy until November and he said it was clear and fast until March.
Mrs Varley, WHO also shares son Charlie, 20, and Daisy, four, with Matthew, She started chemotherapy today, which she says will last about three months, to help prevent the tumor from growing.
“I’m absolutely terrified. I’m afraid for my children,” she added.
“It’s worrying because I’m going to try chemotherapy. I don’t know if it’s going to work.
In an effort to cover daily expenses while Mr. Varley takes unpaid leave to care for Daisy and Delilah, his friends have launched a JustGiving pageraising over £3,000 in just two days.
Ms Varley said: “It’s hard not to talk about dark things when you’re in my shoes.
“I don’t know if this will be my last Christmas or my last birthday with them. I don’t know what’s going to happen. They said the cancer was stable, but all of a sudden it grew. I don’t understand.’
The donations “really matter to the world,” she added.
“When I’m unwell and I’m curled up in bed because I can’t move, my children have food in the cupboards and I can turn on the heating when it’s cold.”