Actually, I do know a couple of patients who had macroadenomas and cushings. In both cases, their diagnosis were delayed for a number of reasons. I think the a number one reason is that many doctors don't know how to properly test for the disease. Cushings is also one of those diseases where it is diagnosed in the laboratory. Many patients have a really hard time with diagnosis. I was one that it took a long time. (5 years) Another thing too, is that when you get alot of doctors involved, sometimes it gets into an academic discussion, and the doctors forget about the patient. Today, alot of clinical similarities are seen with the general population - type 2 diabetes, obesity, hypertension, that many doctors just don't put it all together until more than a decade passes and patients "look" like the patient they saw in their textbooks. ![]() Although most tumors causing cushings are microadenomas, some are growers, and the chance of full resections for those tumors are about 55%. I can get you a white paper on that if you like. ![]() The macroadenoma patients that have tumors that cannot be fully resected are often recommended to be followed up with stereotactic radiosurgery, or gamma knife. Some new technologies are novalis and cyber knife. As with all radiosurgery for pituitary tumors, you have to research those centers too for the best outcome! Some patients choose to have their adrenals removed in lieu of radiation, but there is a chance that the residual tumor could grow, pushing the need yet for another surgery and still radiation. Many doctors argue that radiation should be considered and if the hypercortisolism is not controlled after 3 years (40% of cases), then adrenal removal. You need to get the endo to review your labs with you before your surgery to see if any of them point towards Cushings. Your surgeon will also have the labs reviewed with him before surgery too, so he knows where you are at endocrinologically. It makes a difference on how he will approach your resection. ![]() The good news is that the surgeon you are considering has a very high successful resection rate for ACTH secreting tumors. The endo up there boasts it is around 90th percentile... but I want to see it in writing - lol. ![]() I got back from my post op consult last week, and I got the good news that it looks like I am in remission and am on the road to full recovery. ![]() I can put you in touch with some macroadenoma Cushings patients if you really want to talk with them - email me. Hope this helps. Minnie | 