Mum with world's rarest cancer FATWO after symptoms dismissed
Mum diagnosed with world's rarest cancer FATWO

Nicola Crymble, 43, from Annalong in County Down, Northern Ireland, was diagnosed with Female Adnexal Tumour of Probable Wolffian Origin (FATWO), one of the rarest cancers in the world, after doctors initially dismissed her symptoms as perimenopause and anxiety.

Crymble first experienced pain and bleeding while working in Kenya, after having a contraceptive coil fitted. When she returned to the UK, the symptoms were attributed to perimenopause and anxiety. Even after the coil was removed, the symptoms persisted, and it was only after 10 months of bleeding and a visit to A&E that she discovered the true cause.

Diagnosis and Surgery

A scan revealed a growth, which was later diagnosed as FATWO, a cancer with only 150 known cases reported worldwide since 1973. Crymble's cancer metastasised to her liver and vaginal vault, and with no known treatment, she and her husband Andrew, 44, are seeking help.

Speaking about the diagnosis, Crymble said: "Doctors said it was one of the rarest cancers with only 150 cases ever recorded. My husband, Andrew, asked 'what in America, or the UK, or Europe?' and the doctor said 'no, in the world'."

Missed Symptoms

Crymble, a former classroom assistant, had her copper coil inserted in February 2024, but it caused intense pain and had to be removed while she was in Kenya. Upon her return to Northern Ireland, doctors suggested the symptoms were due to perimenopause and anxiety.

She said: "They told me it was all fine and that it was all in my head." After 10 months of persistent pain, bleeding, and swelling, she felt a lump in her stomach. She and Andrew went to A&E in December 2024, where a scan revealed a growth in her cervix.

Treatment and Metastasis

On February 14, 2025, Crymble underwent a full pelvic clearance, which removed her ovaries and fallopian tubes along with the mass. A month later, the pathologist identified the cancer as FATWO.

Despite the surgery, Crymble continued to feel unwell. She experienced a sudden stabbing pain under her ribcage, and scans revealed the FATWO had metastasised to her liver and vaginal vault, which occurs in about 17 percent of cases. The growths were too close to her heart and bowel for surgery, and doctors decided to try chemotherapy despite no evidence it works on this type of cancer.

Seeking Support

Crymble started chemotherapy on October 13 and will receive six rounds, one every three weeks. She has cut her hair to manage how her daughters see her during treatment.

Her husband Andrew said: "I was asking the doctor questions about it and they just don't know. They've never seen it before, they don't know how to treat it. We just want to get Nicola's story out there in case it reaches someone that knows something about this cancer."

The couple discovered an issue with their life insurance after being advised to get their finances in order. Andrew said: "Apparently our insurance provider had switched, and our payments hadn't gone through - but the emails had gone to spam. Now they won't cover us." Despite appealing and contacting the ombudsman, they were told nothing could be done. The pair have set up a GoFundMe and are encouraging people to take part in the £5 challenge to create some financial security for their children.