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From: Tanya
Date: 12/10/2006
Time: 10:43:44 AM
Remote Name: 65.54.155.46
Hello I am going through these things myself. I had a Pheo. removed in 2003, but started having symptoms again 8 months later. thought that it would be taken care of right away but the Dr.'s are not familar with it either only what they studied in school, or by working with patients who have the illness. Start by contacting the cancer institute and ask them to send you all the info about pheo they will send out a lot of info read it all very carefully and highlight information as you go through then bring you info to dr. but beware this condition is so rare the dr's are trying there best but they will tell you things that contradict the info bring that up. There might be other problems with other parts of the endocraine sysyem. regular Thryoid tests can say it is fine but deeper tests to check for autoimmune should be done. My son and daughter are being tested my daughter came up positive on urine and blood pressure was high but we at the time did not know I had the condition so nothing else was done 4 yrs ago. My son has his 24hr test come out positive, and positive on the autoimmune thyroid test just a month ago now he has other tests to do. just so you know the 24hr urine test is more senetive than the blood test is less senetive contrary to what the dr might say. Be very proactive on this issue learn as much as you can and please do not take you dr's word for it unless you know it yourself like I said this is so rare that 1 in 1 million will have the diease but once you get to surgery part you are all clear with the dr's knowledge It is before you get to that point to always keep your guard up. Has everyone been tested for MEN 1 and 2. After careful research you will probley know more than the dr's but thats good. and pheos can be famillas, or just a rare one time thing. Mine was passed on from family. if you have any thing that you would like to know please post your questions. Please do one thing take a deep breath most of pheos are begin and 1% are maglinant but that is usually due to it getting to big also you will feel better if you are stress free it will be hectic but please take it calm and one day at a time so you can concentrait on the day when everything is conqured. There is no biopsy to tell you if the pheo is begin or maglinant it can just tell you that you had a pheo. If you can please tell me what were the symptoms of your son to prompt surgery or made you aware of something is not right?