On 8/10/2005 Randall W. wrote:
There is VERY LITTLE information that I have been able to find about my "poorly differentiated neuroendocrine cancer" that does not originate from any organ, etc. It was an unbelievably fast-growing thing when it first showed up, surrounding my aorta and spine (grew from 3x5x8 cm at first scan to 8x10x15 cm at the next scan 20 days later!). While it IS responding well to the chemotherapy (Etoposide and Carboplatin every three weeks), I would like to have information about ANY specialist or specialty cancer center for this specific cancer. IT WOULD BE GREAT TO BE ABLE TO ACTUALLY TALK TO DOCTORS THAT DEAL WITH THIS TYPE OF CANCER REGULARLY! My doctor at Emory, Atlanta, GA, is wonderful, but he has not seen this before. Since this is, as I understand it, a systemic disease, I will have to continue treatments for a long time---and "who knows" the outcome. Thanks. R.W. Carrollton, GA
Hi Randall W. My mother was diagnosed with poorly differentiated neuroendocrine cancer with unknown primary approx 3 years ago. She recently sees a doctor in our home state of Nebraska for treatment. We have run into the same problem with finding someone who specializes in her type of cancer since it is so rare. Recently, we did find of a doctor at the University of Iowa in Iowa City, IA who has actually written a book on this type of cancer. His name is Dr Thomas O'Dorisio. His research and work on this type of cancer was done with several other specialists across the country. You may want to do a search on the internet to see if you can find the book they wrote. Dr O'Dorisio is actually an Endocrinologist but he consults with an oncologist when treating patients. Because this type of cancer affects the hormonal systems in patients bodies he does a very thorough research on one's hormonal system to see if he can pinpoint which hormones are affected and whether or not he can pinpoint the primary based on one's symproms and the hormones being affected. We did take my mother to see him and are awaiting his final analysis for his second opinion. They are administering a drug called Sandostatin to patients that help with symptom control and cause the tumors to not grow. There is also a treatment being done in Europe currently that they are hoping to have at The University of Iowa within the next year or so that will actually kill the tumors. Good luck and his book is on the internet. Deb.