Pheochromocytoma

hello I'm 45 years old and have been dealing with metastic  pheochromocytoma  since 2001.  In 2001 I had a adrenalectomy, in 2005 July again they tryed to resect it,and again same year in October the same thing.   In December 2006 I had a radical neck disection  and thoracotomy.  The nodes in my neck were positive for the pheo  but my chest was clear.  In July of the same year I had a retro peritoneal dissection done with positive tissue also.  Again there is not much info out there regarding this type of cancer.  The only way they seem to be able to pin point it is with a pet scan.  We live in Nova Scotia (Canada)and the closest place for us to get this scan is in Sherbrooke, Quebec. If anyone has any contribution to this matter please advise

My son now aged 22 had his 5cm Phaeo removed four years ago. Only 10% are malignant. Unfortunatey he is one of the unlucky 10% and just before Christmas last year he was diagnosed with malignant phaeochromocytomas and has secondaries in the spine. He has just started on treatment of I-131 MIBG and is extreemly positive. He looks a picture of health and it is hard to believe that he has cancer. I would like to hear from any long term survivers of this condition. We live in Australia and we have been blessed with great public hospitals and top specialists.

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