I just saw your post the other day and I see it's dated almost 4 months ago...
how are things now? I saw your post cause I searched the forum for the word 'neuroendocrine' - I have neuroendocrine cancer and wanted to find others like myself but it seems no one else has ever had it, or has ever heard of it. I was just diagonoised mid Oct 2015...when did you find out?
Hi ... I just did a search today and found your post. I was diagnosed in August 2015 with NET originating from the appendix. There isn't much information around at all. How are you feeling? Are you having treatment? I'm having somatuline injections each month and I'm fairly symptom-free at this stage. Early days I think.
I am new to this site but found your messages after searching Neuroendocrine.
My husband (51) has been diagnosed with this cancer in Feb, initally back in November he had been diagnosed a hiutus hernia they did a routine scan whilst there and found a fatty pancreas, no lumps or signs of anything unusual, he then got janudice over xmas and had a stent op to unblock the bile duct, scrappings were taking and cancer was found, still no lumps!!! further scans showed a 2cm lump in the head of the pancreas initally though of as pancreatic cancer, we got referred to a surgeon to discuss operating, they did further scans 6 weeks later to find another lump in his liver, biopsy then showed it cancerous and stage 3 neuroenocrine which is inoperable and incurable, he now has 3 fast growing tumors.
he has just had 4 rounds of iv chemo and tablets but have been told would only look to prolong by 3 months and looking at 12 to 18!!!
we have scan next tuesday and follow up the thursday to find out if it has helped at all.
i am not good at talking and have no idea what to do, sorry for the long post but its nice to get it all out.
