Raising awareness of neuroendocrine cancers around the world

NET Cancer Day

November 10


Dec 2 2010

‘My Unusual Cancer’ Story on BBC News

Philippe Parker has a very rare cancer – so rare few have heard of it.

He was diagnosed with neuroendocrine cancer – which starts in hormone-producing nerve cells. They usually occur in the digestive system but can occur in other parts of the body.

Philippe, who is from London, was lucky. He was diagnosed six months after his first symptoms, including abdominal pains and itching caused by jaundice appeared. But others with the cancer waited around five years to find out what is wrong.

An ultrasound scan revealed Philippe, 39, had a blockage in his pancreas – and most of it had to be removed.

“At first they thought I had contracted something like hepatitis on holiday, or an inflammation,” he said.

“But I had a blockage. A tumour.”

“The tumour was unusual and difficult to determine. It took quite a while before I could get a biopsy.”

When he did it confirmed that Philippe had cancer.

Janet French, of the Association for Multiple Endocrine Neoplasia Disorders (AMEND), agreed that getting an accurate diagnosis is difficult.

“From a recent survey we found that on average patients visited GPs 30 times before getting referral,” she said.

“Patients had an average of 15 referrals; saw an average of 10 different consultants or doctors in hospital and required an average of 15 visits to get a diagnosis.”

She added: “There is a lack of knowledge in all sectors of the NHS, and a patient needs to be treated in a specialist centre where they actually stand a chance of the medical staff having heard of it and know the right things to do and when to do them.”

Philippe is now being treated at the Royal Free Hospital in London with interferon therapy, a type of drug therapy which stimulates the body’s immune system to fight the cancer.

And although it will not cure his condition, it keeps it at bay.

“It is not really curable and not one of those cancers you can be rid of,” he said.

Neuroendocrine cancer is rare with up to 2,000 new cases a year in the UK
It is a cancer of the hormone-producing cells of the body’s neuroendocrine system
Neuroendocrine cells are found throughout the body in organs such as the gastrointestinal tract, and lungs and there are many types of neuroendocrine tumours
The cancer mainly affects the small intestine, pancreas and lungs. It often spreads to the liver.

28 November 2010 – ‘My unusual cancer’ By Jane Elliott Health reporter, BBC News
– http://www.bbc.co.uk/news/health-11838147