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Patients Neuroendocrine tumour

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• Community manager
Posted on
Good advisor

How were you diagnosed? What tests did you have to do (blood test, urine test, colonoscopy, etc)

What made you see your doctor? Or were you diagnosed during a usual check-up ?

Beginning of the discussion - 15/10/2016

Your diagnosis


Posted on

My mum was for years with diarrhea, every doctor said irritable colon. She was diagnosed when a doctor palpatedthe liver, you can imagine it was something big by that time. She got flushing as well,(got red skin and hot when she ate or drunk) doctors didn t know what was it, until she got to the Oncologo. it is possible to detect testing the hormones in the urine.

Your diagnosis

• Community manager
Posted on
Good advisor

Thank you @luli31 for your feedback, and sorry to hear about your mother's diagnosis!

Your diagnosis


Posted on

I had neuro endocrine tumour had a wipples procedure 7 years ago I am now worried it's back as I can't use my left arm pain is 10/10 X-ray shows nothing I'm worried sick it's in my bones

Your diagnosis


Posted on

how are thing now Julie?sorry to hear about your mother

Your diagnosis

• Community manager
Posted on
Good advisor

Hi @candle76,

In order for the person you wish to talk to be notified about your comment, you should type "@" before typing the person's username, as I did with yours.

If you need any help on using the website, please don't hesitate to contact me.

Kind regards,

Margarita

Your diagnosis


Posted on

thank you

Your diagnosis


Posted on

I was experiencing extremely painful headaches. I naively put it down to work related stress so nearly a year. I put on 3  stone in weight but went to a doctor when my periods stopped. He quickly referred me to an endocrine specialist. 

After an MRI scan, they confirmed a Pituitary Tumour(macroadema). Blood tests also confirmed elevated prolactin & growth hormone production

Your diagnosis


Posted on

I was in turkey on holiday and got food poisoning as did few from our hotel I woke up in a private hospital and had been operated on I was told they had removed my appendix but I had already had ruptured appendix age 16 when I finally got back to UK I was sent for scans to see if a kidney had been taken as it had happened before to someone in Turkey to cut it short they discovered I had a neuro endocrine tumour on the head of my deodeum it had spread to my lymph nodes and 17 where removed in a wipples procedure I was 46 this usually happens to older people anyway I suffered terribly with pain since the wipples and they discovered my bowel and stomach hernias I had to have the wipples re opened to put a large mesh repair as my abdominal wall had collapsed I can not eat now without taking octreotide injections as I get dumping syndrome and Creon to digest my food I have terrible nerve damage and suffer great pain because of the operations scar I have diabetes and fibromyalgia also degenerative spine disease irritable bowel syndrome 

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