octreotide scan

Hi Boo79 and a very warm welcome to the online community

I'm sorry to read that you've been told that you might have cancer and I know what a worrying time this will be for you. 

I don't have the experience you're looking for, so did a search in the group to see if anyone here has and found these previous posts. You could have a read through some of them and reply to any of the more recent posts if you think the poster can help you further.

Let us know how you get on next week

x

• Thank you very much latchbrook

Hi boo I was diagnosed in April as having a net in my duodenal upper stomach, after having a endoscopy  after being really sick and diarrhoea for 2years 

Then I was sent to Leeds hospital( jimmys)  cancer unit.

I was referred to a great surgeon for sacoma cancer but after having an endoscopy with camers and xtras taken more biopsy they diagnosed me with neuroendocrine in the upper gi at the start of the bowel.

Apparently this had been shown up in a previous scan 7 years earlier!! Never been told this information  but on hindsight maybe it saved me 8years of worry.

I was then given a octreotide scan to see if it had spread,

Good news was very promising, 

Then I had to go back to trying and remove it though the throat but was not successful, it was stuck in the wall of the stomach. 

Was then sent a appointment 2days later to see a gi surgeon and a team of great nurses to which they had a few disaplimary team meetings to discuss my options, 

Very nervous and determined to get rid of the tumour I went in with this decision. 

But after the advice 

at it was at the moment its asleep and acting as a sleeping tumour decided not to go with the Hugh operation but to keep an eye on it with yearly scans or endoscopy, 

It worries me every day but I think I made the right decision for me.

I have somebody always to ring if am worried.

Thank you leeds (jimmys) I have my trust in you,

Also I went to the mcmillion nurse there but unfortunately wasn't able to see me but sent me over the road to a place called Maggies a chat day centre ,thank you also.

I have many questions unanswered to which one day I will get answered. 

Good luck boo and take care x

Thank you for your response Married. Please can I ask how you cope with the pain? X

Hi boo79 hope you have had your scan and your results are OK,I have been in and out of a&e  at york with pain in my stomach, I had a ct scan and have been told at york that it hasn't spread,was seen by a neorendorcrine doctor who sent me home with a 24hr urine test for 5h1aa testing.

This to me is so confusing as when I looked it up I have so many of the symptoms this last 2 years.ie sickness diarrhoea pain in stomach very hot flush face urine infections for over 2 years but every time I take a sample they say its clear?.and having shivering shakes.i now have taken the sample,no results yet but seeing a specialist this month in York.also seeing a surgeon at leeds gi today re pain.take care married