Hello Everyone! Im so happy to have found this support group and hope to find some answers here. At the age of 14 I discovered a lump on the left side of my neck, my parents took me to the dr. and we were told it was a swollen gland. A year or so later it was still there and a little larger so my parents took me to see a different dr. who also said that it was swollen gland that girls sometimes get during puberty and that it would go away with time. In 1987, at the age of 17, I was involved in a car accident and had to seek treatment for back pain. While visiting this new dr. I showed him my mystery lump which still had not gone away with time and in fact was larger and finally found someone who didnt think it was "just a swollen gland"! Visits to the ENT and tests later revealed that I had a carotid tumor. My parents were told that it was nearly unheard of for someone my age to get one of these and that they were a rare ALWAYS benign tumor. I had a 7 1/2 hr surgery to have it removed and a week long hospital stay. That was supposed to be the end of it, we were assured that this doesn't occur twice and I had nothing to worry about. Life went on. All throughout my life Ive had episodes with profuse sweating, night sweats, flushing, feeling like I'm burning up from the inside, mood swings, anxiety, shaking, absolutely horrible stomach aches and digestive issues, agonizing headaches. More recently I have developed back pain that I have been told is arthritis and unexplained leg pain in the calves that is so bad it is nearly impossible to even walk at times, the list goes on. Dr after dr have never been able to figure out what is wrong with me and to be honest, at times I have felt that maybe I really was just crazy or a hypochondriac so for the most part I've just accepted all these weird health issues as a part of life. Last year I noticed a lump on the right side of my neck and didn't go to the dr. right away because I had just had a hysterectomy and quite frankly had had enough of drs. for awhile. I have now seen a dr. for this new lump and had my cat scans with dye performed and it too has come back as a carotid tumor. I am scheduled to see the ENT on Monday. I am now full of questions and am having trouble finding many answers. My PCP unfortunately admits that he knows very little about paragangliomas, in fact, he said Im the only patient he has ever had that even had one. (hey, atleast hes honest, lol) So, now I am wondering of course, is this cancer? Why do I have another one of these some 25 years later? What questions should I ask the ENT? What tests should I expect to have performed? Do I need genetic testing done? Is it possible for me to develop these in other areas of the body? I wish I had more family history to go on with this but my mother passed in 2004 and the only major issue my dad has ever had was bypass surgery. My grandfather died before I was born from cancer but I have no idea what type he suffered from and I had an uncle pass from lymph node cancer. I know almost virtually nothing about the health of any other relatives. My biggest is fear is that this will be handled much the same way as the first occurrence and that the drs. will automatically assume that its just an "ALWAYS" benign tumor. Of course I would be thrilled to find out that I am over-worrying the situation but also feel it would be best if were explored more thoroughly than it was when I was a kid. Any advice would be welcome or if someone would like to share their story with me I would so very much appreciate it. I've never known anyone else that has dealt with paragangliomas and it can sure feel lonely sometimes. Thanks for listening.