Nurendocrine carcinoid - surveillance

Hi Bb20258265d1 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I 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 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.

Awful that you've had no replies. Im still waitin for my surgery so dont know what type of scans is given after. I have been told though, that will be checked for 10 years after surgery. Hope all is going well for you x

i had neuroendocrine tumour in my small bowel which spread to the lymph nodes in april 4th 2026 i had tumour removed along with 13 lymph nodes i had full body scan which revealed there was nothing left in my body so i am a very lucky person i am due a scan in november full body and have to have nuclear medicine dye and the scans will be every 6 months for life 

stay strong everyone ️

Im sorry it had spread, but they have done a good job getting it all. Wow every 6 months for a lifetime, thats definately keeping a close eye on you. Thats really reassuring for you though. ️ 

Hi thankyou for replying. I found out because my CT scan with contrast was clear in March 2026. My scans are yearly.  My Tumour was a Typical  nurendocrine. 

I only know its a neuroendrocrine tumour in my right lung. 2.5cm. Ive had CT scan, Pet scan, Dota scan and now they want an ultrasound on my thyroid, plus a Mri scan on my liver. Been told they want the liver scan to compare future scans to. Worried and scared is an understatement!

You will be. Its a scary time. Mine was Typical.  Slow growing. 

hey yes of course it’s a massive worry just stay strong as possible live the life i feel blessed there are others that are far worse than me keep in touch we can get the this 

Thankyou. Ill just be glad when ive had the op and back home. The hospital is quite a long way from where we live, so im getting wound up about that too. Im just a jibbering wreck lol.

you’ll be fine mine was slow growing to try and stay positive those tumours that we have are very treatable and that was told to me by my surgeon