I was diagnosed with goblet cell carcinoid 7 years ago following an appendectomy and had a right hemi cholectomy to remove any residual tumour - I have been under the Royal Free ever since and last year the disease returned.... I am currently half way through chemotherapy treatment - it has been something of a rollercoaster but encouragingly I seem to be more stable with the treatment now. All of the staff at the Royal Free have been and continue to be incredible - however, I am worried about my future and this is where things start to become vague - due to the rarity of the condition. Is there anyone else at a similar stage in treatment or just anyone else with experience of goblet cell carcinoid..?

Hi Paul

As you will know, you have one heck of a rare cancer there so it may take a while for a response on this site. Have you tried on the rare-cancer.org site - I 've seen a post by a Canadian guy with goblet cell carinoid on there.

I'm a mere commoner by comparison with a non-functioning pancreatic NET.

Tim

Hi Tim

Many thanks for your reply - I will have a look ate the rare cancer site...

Take care

Paul

Paul,
I was moderator on the Rare Cancers Forum Appendix Cancer thread, but resigned as such and was consequently de-activated. I wanted you to know that on FB, in the PMP Appendix Cancer Support Group, there are others with your diagnosis. https://www.facebook.com/groups/PMPAppendixCancerSupportGroup/

Although the group has PMP in its title, it is not restricted to PMP. My appendix cancer was mucinous adenocarcinoma, not PMP. There are many variants of appendix cancer, carcinoid and non-carcinoid represented.

I hope that this is helpful to you.

Alice

hi paul. i had a goblet cell carcinoid on my appendix too. it engulfed the whole thing. i then had a right hemicolectomy too. all was well till just in the last month, i have carcinoid syndrome symptoms. their doing blood work now to see if that is what that is.