Mum of three seeks to raise awareness of rare illness

Mother-of-three Joan Kinahan was diagnosed with a neuroendocrine tumour (NET) in 2004. NET is a rare type of cancer; in Joan’s case the original tumour affected part of the bowel called the terminal ileum. It took three years for Joan to receive the correct diagnosis, as her symptoms mimicked those associated with Irritable Bowel Syndrome; including cramps, weight loss and nausea. The tumour was resected in 2004, and initially this helped with her symptoms.

When her symptoms returned with cramping abdominal pains, diarrhoea and facial flushing, and after her children insisted she saw the doctor again, Joan was finally told she had a series of small, 1mm tumours in her liver. Over the course of the following decade, Joan has had a number of interventions and treatments provided by the Birmingham Neuroendocrine Tumour Centre, based at the Queen Elizabeth Hospital Birmingham. Joan, now 69, receives monthly injections of Sandostatin to help manage her symptoms. Speaking about her experiences, she said: “I was told that the tumours in my liver wouldn’t kill me, but that I would die with them. The injections have given me a quality of life that just wouldn’t be there otherwise. I can’t praise Dr Shah, Stacey Smith and the Birmingham Neuroendocrine Tumour Centre enough.”

For years, a single injection of Sandostatin once a month was sufficient to help Joan deal with the symptoms from the NET. But then, in late 2014, Joan became seriously unwell with an unrelated virus and found that even after she recovered from it, she had lost her appetite, was experiencing strange pains on one side of her body, and became unable to keep food down.

In early 2015, Joan was still very ill and lost two stone in just five weeks, finding it incredibly difficult to eat anything. Finally, and at the insistence of Dr Christine May, Joan was admitted to the QE suffering from malnutrition, where she then stayed for nine weeks.

“We’re so grateful to Dr May,” said Joan, who lives with her husband Shea, 70, in West Bromwich. “She saved my life by admitting me to the hospital.”

It was discovered that an issue with Joan’s digestive system was preventing food from passing through her gut, and after much debate on whether or not to operate, she was introduced to a treatment called parenteral nutrition, or PN. PN is a special formula of nutrients which is fed from an external bag straight into the patient’s bloodstream, without needing to enter the gut first. “It brought me back to being me,” said Joan. “I gained weight again, became healthy again.”

PN is not usually a treatment considered for cancer patients – but Dr Shah and the NET team have been working with nutritionists to make it available to these patients as a life extending treatment. They hope to continue to develop these nutrition services further with the help of patients and generous donations.

Joan now receives the PN treatment four days a week, having started on seven, and is able to eat small amounts of food normally as well. Years ago, a patient receiving PN would have had to stay in hospital so that nurses could maintain the formula bag and insert the tube required to transfer the nutrients to their bloodstream. However, following Joan’s discharge from hospital, nutrition nurses now visit her four times a week to set her treatment up in the comfort of her home.

The nutrition team have also given Joan’s husband Shea the training necessary for him to maintain the bag and help her if need be. Shea said about Joan’s care: “The service, treatment, aftercare – we couldn’t fault any of it, from the wards to the clinics.”

Recently, Joan was asked to come to the hospital and receive tests to see if she was suitable for a new NET treatment involving radiation. “I was in the waiting room with a few other people,” she said, “and it turned out they were there to receive the same test as me. We got chatting and they all said they’d never met another person with the same diagnosis before. One man asked how long I have had NET, and when I said since 2004 he said it gave him hope. He hadn’t met anyone else before in the same situation who had been able to give him some reassurance. I think it was that conversation that made me want to raise awareness of NET.

“Because it is a relatively rare form of cancer, many people have never heard of NET, and the diagnosis can be very isolating. So I want people to hear about it – I want to be able to support people who have NET by speaking about my own illness and letting them know they’re not alone.”