Stomach net caught by fluke

Hi Swill89 

I'm not a member of this group but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I’m so sorry you’ve received this diagnosis, particularly while caring for your mum. Because NETs are slow growing, by the time you have symptoms the can indeed have spread to other organs. However this is absolutely not a given, really depends on the stage and grade your primary NET is at. I sounds irresponsible for them to just tell you this news in a letter though - did they have a follow up plan for you to investigate other possible tumour locations? My husband was given an MRI and CT to find is primary and through that they found secondaries. However this was over two years ago, and while he struggles with symptoms of carcinoid syndrome, the actual tumours have held steady which is amazing. So hope you can take some hope in that as I’m sure you’re head is all over the place with your diagnosis! 

Hi thank you for the reply yes the timing is not good at all with having so many things going on at the same time i dont have the time to think about it. They have not put anything in place to see of there are more tumours anywhere else and have not told me anything else only that i have it. I only got referred to 2ww as i happen to mention to gp that i was having trouble swallowing food, although gp appointment was for something totally unrelated and that i have been on ppi meds for over 10 tears and recently found out that i should not be on them for that long but i also have eoe which does not help and my oesophagus jas narrowed and thinned out a fair amount which can have interesting complications having endo.