[Guest]

I diagnosed Carcinoid Syndrome in 96. We recently found a tum by Octrioscan thus far I havent found a MD willing to remove it. I went through 3 rounds of 160mlq Penta-Octriotide helped syndrome, not tumor. I have been to 3 major med centers all have said " Carcinoid has no cure so we wont do anything. I have serched Web to no avail, seeking any clinical trials or MD willing to work on a Carcinoid. my syndrome beaing so sevear y believe it has mets beyond my liver. One majior problem I have is a CT has thus far not found a mass. One Carcinoid specialist said he believed tum to be " like a spider web" is we haden't found it in years bee. advice can give to those of us "tums of unknown origan". I amoung ors litterly dying no medical help, save Sostatin. I know is not a easy problem, if could offer any advice, or inmation it would be greatly appreciated. Respectfully, Moira

[Guest]

I would agree with your physicians that the presence of carcinoid syndrome almost always implies that there is extensive tumor burden. Given that you have the syndrome the mass which is seen is most likely the tip of the iceberg and surgery would expose you to the risks without significant benefit. Thank you for using oncologychannel and please write back if other quetions should arise. Also please look at the carcinoid section in oncologychannel as it mentions a physician who is a specialist in carcinoid who may know of trials of which I am not aware. Good luck.