carcinoid tumour on appendix

Please, please, please arrange for your son to see a specialist in appendiceal cancers.  They are not the same as other cancers, and cannot be treated with standard colo-rectal protocols.  I go to Memorial Sloan Kettering in NYC, and those of us with appendix cancers usually have to travel to one of the specialists.

angelsnls said:

Thank you abrub, we are in

Thank you abrub, we are in the UK (shetland Isles in Scotland) I am seeing my oncologist next week so I am going to talk with him about it and see if there is a specialist in Aberdeen that would see him.

Thanks again for your reply lots of love x

In GB, the appendix specialists are at the Christie and at Basingstoke.  I don't believe there is anyone in Scotland.  (By the way, I'm a 7+ year survivior, and only missed one season of curling!)

Alice

angelsnls said:

Thanks Alice I will look into

Thanks Alice I will look into it. I was just told that my lung mets are shrinking but there has been a recurrence in the site where my kidney & tumour was removed from, I am more worried about my son as he has a lot of living to do yet, I have 7 kids 4 all grown up and got there own houses etc and 3 younger still at home (15,14 and 8). So I will fight to be here to see them all grow. I am seeing my oncologist next week so he will be asked questions about my son and where to get specialist care even if it means going to England, take care.

Lots of love angela

Perhaps a visit to a carcinoid tumor specialist would be in order for your son?  I have panceratic neuroendocrine carcinoid tumor (carcinoid that originated from the pancreas). There's different types that originate from different areas in the body.  Your son's doctor needs to discern between well and poorly differentiated, if it is small cell, what growth rate can be anticipated (slow to moderate to aggressive), etc.  I was diagnosed at stage IV in 2010, and after chasing the wrong kind of cancer for 2 1/2 years I'm now on the path to possible remission, or at least the closest we possibly can come to it.  Mine is well-differentiated and moderately growing, and we seem to have found the magic bullet. Hopefully the surgeon got all of the carcnoid in your son's appendix and nothing more needs to be done.  Many people actually pass away with carcinoid as opposed to from it, with the disease only being discovered during an autopsy because the growth never caused an symptoms or problems.  I've learned to always second-guess the opinion of my doctors.  There's a carcinoid specialist in London, his info is below: