Living with Pancreatic NET [video]

Video author: Streaming Well
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Video Transcript

Streaming WELL

Pancreatic NET: a rare cancer

Pancreatic neuroendocrine tumours (NET) are uncommon malignant tumors arising from endocrine cells of the pancreas. Well, I noticed that something had to be quite wrong because every morning I had diarrhea 3 times. And went to a gastroenterologist, and he told me, well, you have celiachia. I, too, joined a support group, and there I learned that if I kept a strict diet as I alreally did, then I shouldn't have any diarrhea, and they advised me to go again to a doctor and get a better diagnosis. And the doctor came and he had looked at what the gastroenterologist had written--I had taken it along--and he said, well we now know what you have. It's not that you have coeliac, we are almost sure that you have a NET.

Inge was diagnosed with pancreatic NET in 1988.

I didn't know what a NET was at those days, and they had little time and nobody explained it to me. Since then, I asked my very nice ward doctor if he couldn't give me any information, if there wasn't a book I could read about it, and then he brought me a booklet and which--from which I learned I could live for quite a time on a pill.

Inge had surgery to remove the tumour.

After 11 years, I found that I got the same symptoms again, and told my doctor, well, send me to the hospital again, and it was soon. And there I had a very, very nice doctor. And then it could be operated a second time.

B-S NET works to support people with NET.

The main aim of our organization is to help our patients to get to the right diagnosis very quickly and to give them advice, and really name those experts to them, where they really can get the proper treatment for it. We started with our organization in 1999. It was when we were first beginning, it was only 40 members, and then by-and-by we understood that there were many NET patients all over Germany, so we knew that we had to spread out. We started these regional groups, so that wherever there were a number of NET patients who are living around 1 place, so that they could meet and could discuss their disease and exchange experiences. There are support groups in almost all the European countries. I am very proud that things are developing for the better and that it's getting European-wide known so that everybody could get the correct help
in all the European countries.

What do you say to people with NET when they first call you?

They are very insecure when they phone us. They are very unhappy. Many of them are weeping when they phone me, and tell me I have just got that diagnosis, and then I tell them, I give you my example. I have a very slow growth, and I have been living over 20 years now with it, so don't think that you have to die so soon because now you are in the hands of experts.

What would you say to a physician who may have a NET patient?

What I would like to tell them is to look more closely to the symptoms patients have, especially when they are such diffuse symptoms because there a NET could be hidden. And--and then they could better diagnose it.

How do you feel about your life with pancreatic NET?

Naturally, of course, I am quite happy at that, and I'm enjoying life. I can still live it to the full at my age. I'm really very gratified for being so able to do something for others, and this I think is very fulfilling.

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