Northern Ireland mum, 43, with one of the world’s rarest cancers appeals for anyone who knows about it
A Northern Ireland mother of three is living with a cancer so rare that only around 150 cases have ever been recorded worldwide, and her family are now appealing for anyone, anywhere, who has come across it to get in touch.
Nicola Crymble, 43, a former classroom assistant from Annalong, Co Down, has a female adnexal tumour of probable Wolffian origin, known as FATWO.
It grows from tiny leftover tissue from before birth, usually beside the womb. Most of the doctors who have treated her had never seen a case before. Nicola had major surgery in February 2025, and the family hoped that would be the end of it. Most FATWOs never come back after surgery. Nicola’s has.
Last month an MRI confirmed the cancer had returned in two places: at the top of her pelvis and at the top of her liver, just under her diaphragm.
Because both sit close to her heart and bowel, surgery and targeted radiotherapy have been ruled out. Last Tuesday Nicola began chemotherapy, which she will now have every three weeks, with a scan after three cycles.
Her doctors have been honest that the aim is to control the cancer for as long as possible. Because FATWO is so rare, there is very little research to guide her care. Andrew Crymble, Nicola’s husband, said: "There is no proven treatment and no clinical trial, because there have never been enough patients to study. For the last two years Nicola has had hospital appointments almost every week, in Craigavon, Newry and Belfast.”
He added: “There’s no roadmap for this. Every decision about Nicola’s care is being made with very little to go on.
"Somewhere out there is a woman who has had FATWO, a family who has been through it, or a doctor or researcher who has studied it. We want to find them.
"Any knowledge, however small, could help Nicola and the women who come after her.”
The family have begun sharing Nicola’s journey openly online as Nicola’s Story (@livingwithfatwo) 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. Andrew adds: “We have also started Nicola's Journey: The £5 Challenge on GoFundMe.
"We're not asking anyone for a lot. It's a small gift of £5 if people can, and, just as importantly, a share of Nicola's story and a nomination of five friends to do the same.
"Every share puts FATWO in front of someone new.”
The fund will support Nicola’s three daughters Rebecca 15, Rachel 14, and Hope 6, explore 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 is 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. 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.
l Anyone with knowledge of FATWO is asked to contact the family at [email protected] or through @livingwithfatwo on Facebook, Instagram, TikTok, YouTube and X. The GoFundMe page is at gofund.me/e5cc123a5