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Pancreatic NET Tumour Symptoms

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Living with Pancreatic NET

My name is lnge and I am 79 years old. I have lived a full and happy life despite having a pancreatic neuroendocrine tumour (pancreatic NET) for nearly twenty five years. I am an active member of the NET community and a passionate advocate for patient support.

It was in 1986 that I noticed the first signs of ill health. I visited a gastroenterologist as I had persistent diarrhoea. I was diagnosed with celiac disease and given instructions to bake my own gluten free bread. This made a difference for a few years but then the symptoms returned. When l joined a patient support group and spoke to other people with celiac disease, I realised my symptoms were unusual and my diagnosis was probably incorrect.

During this time, I became weaker and was eventually unable to stand. I went to hospital and was quickly diagnosed as having ten duodenum ulcers several of which had burst causing considerable blood loss. I had surgery for the ulcers and there they discovered the pancreatic NET.

The surgeon wanted to perform a precautionary procedure called a 'Whipple,' an operation to remove my pancreas, gall bladder and most of my stomach. I decided against it and opted for an operation just to remove the tumour which would preserve my quality of life.

ln 1997 the symptoms returned and I had a second surgery which was also successful and today I live a normal life with my disease with the help of a daily dose of antacid to help with the symptoms.

My pancreatic NET has changed my outlook on life and I decided to give something back to the patient community. I joined a patient support group, BSC-NET where I worked as part of the steering committee. ln 2006, I was elected as the first chairwoman of the Board.

BS-NET is active across Europe, collaborating with other local groups to increase knowledge of pancreatic NET and so improve the rate of early diagnosis and availability of new treatments. On a local level, we provide advice over the phone to newly diagnosed patients. When a new patient calls me, I give them the names of two experts who are near their home. We provide a forum for patients to share their experiences here and we provide information in the form of brochures and articles, and on our website. The condition is very rare so we give our brochures to practitioners because disease awareness is still needed to improve the outcomes for people with pancreatic NET here in Germany.

For more information visit BS-NET online at www.net-shg.de

The production of this video was made possible by Pfizer.

10081 Published 22 April 2011

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