Donna Marklew had a hysterectomy to treat complications caused by childbirth. Tests on tissue removed during the operation at Warwick Hospital, carried out after a uterine prolapse, revealed a rare form of cancer. Marklew, a Coventry mother, was diagnosed with neuroendocrine cancer. The operation had led to a life-changing diagnosis.
“I was very shocked because I’d never heard of neuroendocrine cancer,” she said. She was left with little information because the disease was not known to anybody, she added, and trying to explain the diagnosis to other people was often met with blank faces.
Neuroendocrine cancer starts in neuroendocrine cells, which produce and release hormones. Neuroendocrine Cancer UK estimates the disease affects 6,000 people in the UK every year.
Lisa Walker, chief executive of Neuroendocrine Cancer UK, said the average time between a person’s first symptom and a diagnosis is five years. “That is because the symptoms could be other conditions,” she said. People may find themselves going down a different route and then needing to go back when symptoms change or other symptoms are added, which start to look more like neuroendocrine cancer.
Walker said the cancer is complex and diverse and can develop in any part of the body, one reason detection is difficult. It develops in neuroendocrine cells, which produce and release hormones that regulate different body functions and are found throughout the body. Most commonly it affects the lungs, the digestive tract and the pancreas, but it can be found anywhere, she said.
Marklew, an occupational therapist who works in Leicestershire, said the disease is actually a group of cancers that develop in hormone-producing cells throughout the body. Diagnosis can be particularly difficult, especially for women, she added.
Before the hysterectomy, Marklew had no identifiable symptoms. Looking back, she thinks a trip to Scotland may have been an indicator. During a trip to St Andrews for her first wedding anniversary, she was anxious and had palpitations, but her GP suggested the symptoms were down to her being perimenopausal.
After she was diagnosed, scans revealed tumors in her appendix, fallopian tubes and surrounding tissue. In March 2025, she underwent a nine-hour operation at Warwick Hospital to remove as many tumors as possible.
Surgery alone has not been enough. Marklew has three injections every week to try to keep the cancer under control. She has also just started peptide receptor radionuclide therapy (PRRT), which is administered four times a week, every two months.
Marklew said the tumors are slow growing, which is one of the benefits of this type of cancer. A different type of neuroendocrine cancer can be more aggressive. Hers are grade two, meaning they grow quite slowly, although they are still growing.
Marklew, now 44, said she is able to live a normal life during her treatment, but the disease has had a huge mental impact. She has four young children, a husband, her mother and friends. She said she wants to get up and speak out so that no one else feels so vulnerable after receiving the diagnosis.
She said that unlike other cancers, neuroendocrine cancer is not as obvious or as widely known, so few people understand how she feels. “I could talk to my friends and family all day long, but no one will understand what it is like to live with this condition,” she said. Because the illness is invisible, people tell her she looks great. “It’s really really hard,” she said.
Marklew is trying to raise awareness of the disease, which coincides with World Neuroendocrine Cancer Day on Tuesday. She reached out to Neuroendocrine UK for support and advice, calling it an invaluable resource for people who have been diagnosed. The charity has patient groups in other areas, so she said she wanted to set one up.
A first meeting in September drew one other person and a nurse, which Marklew said was nice because it gave them a couple of hours to talk. The group then met bi-monthly, and later six people attended. Marklew said it felt good to build that support.