Patient joins campaign for treatment improvement
9:02am Thursday 12th September 2013 in News
A BARRY grandmother is raising awareness of a difficult-to-diagnose medical condition, amid calls for patients to gain treatment in England when it doesn’t exist in Wales.
57-year-old grandmother-of-five Ros Follett was diagnosed with carcinoid syndrome in June last year – after previously been thought to have been experiencing menopausal symptoms.
The cancer, neuroendocrine tumours (NETs), is unusual in that it is a difficult-to-diagnose, lifelong condition needing considerable on-going management and treatment in the same way as diabetes, rather than the more common cancer profile of a 'cure' - or not - followed by infrequent monitoring.
A netpatientfoundation group of local patients met with Vale MP Alun Cairns, in Barry, recently to discuss how people could access the appropriate consultants and therapies, even if this required referral outside the NHS in Wales.
They also called for equal availability of drugs regardless of postcode and the provision of a specialist neuroendocrine tumour nurse, to cover the South Wales area, who would be a key worker.
Ros, housewife and member of the New Jerusalem church, attended the University Hospital of Wales and Llandough for tests before obtaining her diagnosis.
She said: “I kept going to the doctors. You know when there’s something not quite right. I’m a diabetic and I had diarrhoea and flushes and they put it down to my diabetes.
“One said it was the menopause and prescribed tablets.
“I had them for a couple of months and still wasn’t feeling right.”
Tests then revealed Ros had primary cancer in her bowel with secondaries – multiple lesions - on the liver and lymph glands.
The former St Richard Gwyn RC High pupil needed needed monthly injections of octreotide – to control the release of the hormone-like serotonin into her body, before undergoing a two-and-a-half-hour operation on her bowel at the UHW on September 12 last year.
She spent ten days recovering in hospital and was left with a 12 inch scar on her abdomen.
There is a twenty percent chance the tumour can return, but Ros continues to have monthly injections as well as hospital checks to control and monitor her health.
She said: “You imagine people with cancer in pain, but I never had that.
“I would never have known.
“It has to be controlled and it’s not curable, but it’s controllable.”
She added: “Anyone can get it and that’s why we are campaigning.
“It’s not common so many GPs don’t recognise it.
“Now the flushing has gone that’s made a big difference to my life.
“Don’t put it off – it’s better to know.
“I can carry on with my life and do what I want to do.”
For details, visit www.netpatientfoundation.org