The family of a County Down mother-of-three – bravely battling an incredibly rare ‘one-in-a-billion’ cancer – is appealing to anyone with knowledge of it, anywhere in the world, to come forward if they can help.
Nicola Crymble, a former classroom assistant, has FATWO – female adnexal tumour of probable Wolffian origin – a cancer so rare that only around 150 cases have ever been recorded worldwide.
The 43-year-old, from Annalong, underwent major surgery in February 2025 and she and husband Andrew had hoped that that was the end of it.
Sadly, however, the cancer returned and, given where it is located in the body – and how little is known about it – it has been deemed too risky to attempt removal.
Now they have embarked on a quest for knowledge, in the hope and belief that someone somewhere must have experience of FATWO and will be able to help.
A fundraising drive has also been launched as the family explore all options available to them in the days ahead.
Andrew said most of the doctors who had treated Nicola – whom he describes as “the heart of our family” and who has undergone much of her treatment over the past two years at Craigavon Area Hospital – had never seen or had any experience of FATWO.
Speaking to Armagh I, he explained: “Most FATWOs never come back. Last year they had said we feel that we’ve removed it and we don’t feel that it will metastasise, but unfortunately this year it did.
“The typical way of removing a disease that they’re not au fait with is to cut it out, but they can’t do this in Nicola’s case because it’s too close to the heart and too close to the intestines. What they’ve done is started her on a broad spectrum of chemotherapy but they don’t feel that it will touch it. It might slow it just.
“There is no proven treatment and no clinical trial, because there have never been enough patients to study. From 1973 to now, there’s been between 150 to 165 cases of it globally. They say there’s around, at any given time, three to four cases per year worldwide.
“For the last two years Nicola has had hospital appointments almost every week, in Craigavon, Newry and Belfast.”
The family decided to go public in the hope that they might be able to find someone with experience of FATWO who may be in a position to help Nicola and for all of those who may face that rare and devastating diagnosis in the future.
“Our goal is knowledge,” added Andrew. “Somewhere in the world there is a patient, a family, a doctor or a researcher who has come across FATWO and we want to find them. Any experience of this cancer, however small, could help Nicola and the women who come after her.
“We’ve been able to get clinicians globally so far in the last seven days to look at Nicola’s case; pathology stuff has been sent already from Northern Ireland for them to look at and for them to study.
“But what we’re wanting to do is have this type of cancer really well read up on, so that if Nicola doesn’t get to avail of it, the next Nicola does.
“Pharmaceuticals make an awful lot of money out of cancer. Nicola actually asked me this morning, she says, surely some big company would like to look at it? I said, no, they wouldn’t Nicola, because it’s so rare there’s no money to be made at it, because there’s only three cases a year. If there’s 100,000 cases a year, absolutely, they’re going to.
“We’re just trying to get people together. We’re trying to raise money too, because we’re going to have expenses down the line for different treatments, but at the minute we’re just trying to get everything in line.
“At the minute, Nicola is undergoing six sessions of chemotherapy, so it’s every three weeks. Our next one is on November 3 and it’s about February, actually, whenever those chemos end. We want to be able to be in a position at that stage that we can say, well, we can go route A, B or C. We’re already starting the A, B and C, but we need to have confirmed A, B and C routes in terms of where, what, why and when, and it’s to get the knowledge out about it.
“It’s to try and raise some money, to get more knowledge about it and ultimately get sort of clinical papers written up, so that a gynaecologist in Japan, for argument’s sake, or in Armagh, even, can look up and say this is how we treat Mrs Wilson. This is what we need to do, because at the minute it’s literally they kind of say we can’t do any more.
“That’s really what they’ve told us, but already we’ve been able to prove that’s actually not right. There’s a lot more people with a lot more information and they’re willing to talk and willing to relook at slides of Nichola’s biopsies.”
The family have begun sharing Nicola’s journey openly online as Nicola’s Story – www.livingwithfatwo.com – to raise awareness and reach patients, families, doctors and researchers worldwide.
They are also seeking specialist second opinions, to give Nicola every possible option, while being clear this is not a promise of a cure.
In addition, they have launched ‘Nicola’s Journey: The £5 Challenge’ on GoFundMe, asking people to give £5, share the page and nominate five friends to do the same.
The fund will support Nicola’s three daughters, Rebecca, Rachel and Hope – aged six, 14 and 15 – while exploring further treatment options and therapies, raise awareness of FATWO, help Nicola fulfil a few personal wishes and support a local charity and the work in Kenya that she has given so much of herself to over the years.
The family are appealing because the life insurance they had put in place for Nicola is no longer there; when her insurer closed, the policy passed to a new company, whose renewal emails went to the couple’s spam folder and, by the time they found out, the cover had lapsed and attempts to restore it, through the insurer’s complaints team and then the Ombudsman, were unsuccessful.
As Nicola continues with chemotherapy, the family hope the answers and help they need are out there somewhere.
Said Andrew: “It’s like everything, when your car breaks, maybe an electrical fault, you’d go all around Northern Ireland to get someone to fix it and no-one can fix it, but then the wee man in Bushmills, he knows that exact fault and he knows how to fix it. It’s that kind of thing. There is someone who has more knowledge about it, that has it or maybe has written it. We live in a massive world and we have very, very intelligent people globally, but there’s some people that their information isn’t being relayed.
“But she’s weak as water. She ended up in hospital on Saturday for pain medication, but she’s just very, very weak at the minute.
“I rang her this morning and she said she had a really good night’s sleep last night and she’s overwhelmed already by the amount of people that have reached out to her, but she’s tired and sore.”
So far, the response from the public has been “unbelievable” with “hundreds and hundreds” sending messages, emails and making contact via WhatsApp.
But Andrew added: “The clinical side is the bit that fixes the problem. Northern Ireland, believe it or not, for such a small place, we are one of the leading countries in the world for cancer and cancer research. Professor Glenn McCluggage, based at Queen’s, has opened a lot of doors in lots of other countries.
“I had contacted these people, because I had researched them, but because Glenn McCluggage is on board these people are listening and they’re very keen to do further clinical tests, do molecular tests, and once they do further molecular tests on Nicola’s biopsies, they then can determine the type of drug that may cure the cancer or slow the speed down.
“From a clinician’s point of view, truthfully, we have been contacted, I would say, from all four corners of the globe. I’ve had an email earlier this morning from Australia and the Australians came back and said that we have had no known cases of FATWO. I had one from a guy this morning who wants me to send through Nichola’s pathology details so that he can pass it to a panel of 40 other pathologists in China, Japan and around there.
“Ultimately what we want to do is get the information, pray that we can get a treatment. That treatment may be medical, but it also might be removal. Belfast told us that it was too risky to remove, because it was too close to other things, but as I said to the oncologist last week, is it too risky for you or too risky for Nicola? They said it’s too risky because it could go wrong. My theory is that it’s already going wrong.”
Anyone with knowledge of FATWO is asked to contact the family directly at nicola.crymble@gmail.com or through @livingwithfatwo on Facebook, Instagram, TikTok, YouTube and X.
And if you would like to make a donation, you can do so by clicking the link here.
