NET patient UK

Building towards a cure for Neuroendocrine Tumours and Cancers through Research, Education, Awareness and Support.

To raise the awareness of NeuroEndocrineTumours (NETs) among patients, the general public, and the medical and the research communities by:

(a) providing well-informed support on management and treatment options to all those involved with NETs; and

(b) supporting NET-directed research and better clinical management practices that will achieve an ultimate goal of early accurate diagnosis and best possible treatment for NET patients

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Debbie Margeten

I was 42 when I was diagnosed with carcinoid. I had a tumour the size of a grapefruit in between my large and small bowel. They operated on Dec 1, 2000 and removed the tumour.

I am an avid runner and kept up the running even when I went through chemo from Jan to June of 2001. I was prepared to do a half marathon in October but cancelled since I had a miscarriage in September and was advised to have my tubes tied. Cancer was in my lymph nodes so I was told I had to have chemo treatments and I was to get menopause earlier. Not me I was pregnant and didn't even know it other than my breast being sore when I started to run.

2004 I was told I have spots covering my liver and I could not have an operation for no where in my liver was it available to get a clean spot. I stopped running for a year last year for I tried acupuncture and the lady said running is too hard on the body. The last report was not any better so I have started running again and did a half marathon in Oct 07. 2hrs.6min. and I was running back to catch a person who was having a hard time!

I've been told I have spots on my lungs now. I was very disappointed at the Cancer Clinic when I was diagnosed for I was told I would learn so much about carcinoid for my family doctor said he never heard of it. The cancer clinic told me there is no one I could talk to when you phoned for a person who has had the same cancer. I was told there is a computer at the cancer clinic but I was not a computer genie! I had my brother print off some information which I could understand. I went to X for a meeting about carcinoid years back and cried when they said my partner for communication from the website was dead.

I have dealt with carcinoid with shots of Sandostatin Long Acting Release 20 mg. Now I take two shots at 30 mg every two weeks. I was told I do not have the receptors to have treatment in London. I am not in pain and I work at a bank 4 days a week. My memory is not as good due to chemo but I am doing fine.

Hope this can help anyone else.

November 2007 by Debbie (Gray) Margetan,
Ontario
Midgut-Lung Tumour

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