Together we will beat cancer


carcinoid tumor ?

23 Sep 2019 12:08

hi on 2.09.19 i was diagnosed with tumours on my liver, Confused first they were leisions and once i had the pet scan they diagnosed them as tumours? also they said i have "probable" carcinoid tumour in my distal ileum, calcified abdominal lymph nodesShocked

to be honest im not a 100% sure on anything? i had an mri scan last week and need to wait before i see a professor and im waiting on a NET MDT referal?

i have given 3 stool samples and they were coming back at 700? from what i undertstand anything over 50 is not good? again im not certain on what this means?

i suffer from strong stomach pains daily and heavy diarrohea episodes up to 12 times a day and nite.

has anyone else had simialr issues? thanks for looking johnLaugh

carcinoid tumor ?

24 Sep 2019 11:01 in response to scouserjohnny

Hello John and thank you for your post,

Undergoing investigations can be worrying but I am afraid to say you do need to wait for the discussion of the multidisciplinary team (MDT) meeting to take place before anything more is known.  This meeting gives the specialist team involved in your care an opportunity to discuss your case with other specialists. At your next appointment your doctor will then discuss the outcome of this meeting. Hopefully then you will know more and if you need further investigations  to see if this is definitely a carcinoid tumour or if it is something else.

Waiting for the outcome of meetings and test results is difficult so I hope yo are able to cope. Talking with family and friends and keeping busy will help . I hope you know more soon.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,


carcinoid tumor ?

24 Sep 2019 13:33 in response to CRUK Nurse Caroline

Thank you so much for your advice x