A Leicester mum is raising awareness of an extremely rare condition after doctors found a 15kg, non‑cancerous but aggressive tumour growing in her abdomen.
Nineteen-year-old Lola O’Neill returned to the Leicester Royal Infirmary just five weeks after giving birth, with excruciating pain and an enlarged abdomen, which she said made her look “around six months pregnant.”
After an ultrasound and CT scan identified a large mass, she was referred to the East Midlands Retroperitoneal Sarcoma Service at the Queen’s Medical Centre in Nottingham for a biopsy.
Lola said: “I had no idea if it was cancer or not. I had a newborn baby, and my stomach was just getting bigger and harder. I didn’t know if I was going to live to see my twentieth birthday, let alone see my little boy grow up. It felt like a nightmare.”
The lump was identified as a desmoid-type fibromatosis (sometimes called a desmoid tumour or aggressive fibromatosis) — an extremely rare, non‑cancerous but locally aggressive growth that arises from connective tissue. These tumours do not spread to other organs, but they can grow quickly and invade nearby tissues, blood vessels, and nerves. Doctors believe that hormonal changes, particularly higher oestrogen levels after she gave birth, may have caused Lola’s tumour to grow rapidly.
Lola was referred to Professor Samuel Ford, a specialist at the Midlands Abdominal and Retroperitoneal Sarcoma Unit at the Queen Elizabeth Hospital Birmingham, where she had the tumour removed during a five-hour operation.
Lola said: “It had attached itself to my colon and pancreas, and by the time I was admitted for surgery, I looked nine months pregnant again, but I was a distorted, twisted oblong shape.”
After five days in intensive care and further recovery time on the wards, Lola was able to return home. She will be closely monitored over the next 10 years for any potential recurrence.
Lola hopes sharing her story as part of Rare Disease Day will raise awareness of desmoid tumours. Rare Disease Day, held every year on 28 February, is a global event dedicated to raising awareness of rare medical conditions.
She added: “I had no idea it was there and still don’t know how long it was there. I’m so glad it’s now out, but I do want other people to be aware of these types of tumour and how quickly they can develop. Even though they are rare, they can happen to anyone.”
Professor Ford said: “Generally, these types of tumours do not need to be removed surgically, as most will stabilise and can be monitored with MRI scans. If they start to grow, they can often be controlled with medication.
“However, there is a subset of fibromatosis that we see — thankfully very rarely — in young women that can grow rapidly and relentlessly and can be very difficult to control with medications. Lola had this type, and it is very likely to have been stimulated to grow rapidly by pregnancy-related hormones. In Lola’s case, if the tumour had not been removed when it was, its rapid growth would likely have led to severe and potentially life‑threatening consequences.”
Professor Robert Ashford, lead clinician for the East Midlands Sarcoma Service, said: “We are glad that Lola is recovering well from her surgery, and we are grateful that she is helping to raise awareness of the condition. We are proud that our integrated service across the Midlands enabled us to work closely with neighbouring trusts to diagnose and treat the tumour in a timely way.”