[Guest]

I have been diagnosed Carcinoid Syndrome, unknown tumor location. My diagnosis has been confirmed by lab's 5-hiia, 5-tp, Acth, prostaglians ect. I have had Octrioscans done evry 6 months CT's following. I have const right flank pain requiring Morphine relief. I have all signs of a tumor in a kidney, ( gross blood in urine constantly ect) My problem is when we found uptake during a high dose (160mlq) Octrioscan in adrenal right kidney, as well as 2 places in liver to bone, when we do a CT to "comfirm" it is neg. I have had my appendex removed as y said tumor must be ir, it ent. n y did a complete hystorectomey due to a grade 3 pap path.Still no tums. When I am sent out to a surgon removal of kidney in question y have never seen an Octrioscan cant read it. out a confirming CT y wont remove kidney, though y remove any or organ a blink of an eye. I know how unuasual carcinoid is, have many MD's refuse to see me even a consult y believe if have syndrome have Mets should be placed on Hospice,( y have done). I have traveled across US in serch of help. In my Carcinoid support group ir 4 or cases like mine. No tum found on CT, only on Octrioscan. MD's refuse to reconise as a diagnostic test. Now ir only 2 of us "unknowns" alive. All died out any treatment or surgery, not even exploratory surgery or biopsey's. I told of a case like mine where during exploratory woman went into a crisses as MD refused to use Sostatin during surgery. I told no MD will perm surgery on us seeing my syndrome is extreamily sevear. I have had PET scans MRI VOX, all to no avail. Can advise if ir any new scans may find se hidden tums? I underst C.U.P's difficult cases. I have more scars n Fraensteins wife! I am orwise a healthy 36y/o F, living in CA. I have been to Dr Anthoney whom a great help, still needs a confirming scan a surgon will except. I told about someone who useing PET marking not glucose ss2 ss3 receptors, no one knows whom is. I have called NIH, y have no clinical trials CUP's Carcinoid. I am at end of my battle, my syndrome is out of controll, So no longer restrains it at 2500mcg infusion daily. If could please offer anything, scans, Chemo's ect or clinical trials I would thank along many or of us Carcinoid Orphens. Thank time,

[Guest]

I am blanking on the name of a physician who specializes in carcinoid and its treatment HOWEVER his name and the institution where he is located can be found in the carcinoid section of oncologychannel and I would refer you to this area for that information. Thank you for using oncologychannel and please write back if other questions should arise. Good luck.