Net in stomach

1. Hi Amy I was diagnosed with a neuroendocrine tumour in my stomach last year,this was found on a ct scan at my local hospital.
2. I then had 2 endoscopy to decide the size ,it was 2 and half centermetres,I was then referred to Leeds where I then had a more technical scan that could see and take biopsy of a more detailed, I had already had 2 biopsy done previously. 
3. I was then referred to try and have it removed by a endoscopy procedure but wasn't successful. 
4. I then had a full body scan to which it had not spread and also revealed that it was asleep and acting as if it was a nonsense a non cancers, after many discussions that happened though the disaplimary team meetings with the endocrine team I made the decision to not operate and to have a yearly ct scan,so I understand how worried you are,I didn't know what was happening, you must pressure to get some thing done to help you understand, I havea fantastic team of people now looking after me at leeds,I hope you can get the same help .take care x

Hi Amy sorry if any help a emr you can look up what it involves, they also tried this procedure and I also had a full body scan called octreotide scan which having done was very reassuring x

Thank you. They haven't involved me in any of my care. I haven't even been offered a scan which is hard for me to understand as I never knew I had this one so how can they guarantee I haven't any others. It would do just that be reassuring.

I have read about the EMR and can't say I'm keen on the idea as I've struggled with the other 2 being only sedated. I have a problem with my throat so I retch loads and end up having panic attacks after.

I don't think I've had any referrals to any specialist teams. 

I will ask today about that scan too. I feel it will help put my mind at rest that it has been checked. 

Thank you for sharing your experience with me. I will write a list of questions and worries. X

Hi Amy I had the emr and it it's much different to the endoscopy they have to keep you awake but can give you a lot of sedation,mine didn't work because it was in the wall of the stomach,fingers crossed for yours.x

Hi, thank you, they have already told me it is in the wall of my stomach. That is why the last procedure was unsuccessful. They said they put in a lifting agent via injection and it wouldn't lift because it was deep in the lining of the stomach. I appreciate you sharing this information. x

Your welcome please ask before having it done if they think it will work,the man that did  mine said before he started he would not be able to do it don't want you going though that if not any good,do you know if its growing mine has stopped which is good ,they must know if you have has the endoscopy fingers crossed x

Thank you, the consultant's appointment for today has just been cancelled. I will definitely ask. When they found it, it was 0.5cm, on the attempted removal it was 1.2cm so it has grown. x

Such a shame they cancelled your appointment just to try and reassure you a bit mine was on a ct 7yrs ago but I wasn't told till they found it again last April during a ct scan to start with I was really cross and couldn't believe it was the same consultant 7 yes later so he very quickly referred me to one of the best consultants in England, first they said it was a sacoma tumour then was told it was a endernouercrine tumour,after I thought about it had had 7yrs of no worry which is how I now look at it.

It's now 2 and half cm and stopped growing at the moment,this is why I decided not to have the operation with the advice on a group of surgeons and specialist nurses.

So fingers and toes crossed your will be similar to mine.

It was awfull to start with ,I worked at a doctors but never heard about it only what I got of the Internet.do push for things to move on,and mcmillan nurses are a great help x