And It's About Time There Was Some Support For Cushing's!
I was diagnosed with Cushing's Disease in July, 2002 after suffering from episodic symptoms for about 2 years. My cortisol level reached 1400 with the normal range between 50-100. This caused much concern with my endocrinologist and she quickly ordered CT scans and MRIs of the head, chest and abdomen. The CT scan of my abdomen was negative, as was the MRI of the brain indicating my Cushing's disease must be caused by an ectopic tumor and not a tumor of the pituitary or adrenal glands. A 5cm mass was found in my chest CT scan. The mass was located in my left anterior mediastinum directly above the heart (very rare) and encased the great vessels leaving the heart.
I had a biopsy in Sept. indicating the mass was malignant, but was well-differentiated and low grade. The cell type could not be determined during this procedure.
I received several opinions from oncologists and surgeons, including Georgetown's Lombardi Cancer Center and MSKCC in NYC. The prevailing opinion was to perform surgery to remove as much of the tumor as possible and then to undergo radiation treatment to remove any remaining tissue.
I underwent surgery at MSKCC in Dec. and am currently in my 3rd week of radiation at MSKCC. I also take several medicines to help keep the ACTH and Cortisol levels in the normal range. These include Octreotide (Sandostatin) and Ketoconazole. 6 weeks after surgery my cortisol level had dropped from pre-surgery level of 1400 to normal. I also take a small dosage of prednisone to ensure that I don't go into adrenal crisis.
