I'm Rare times 3

Just a note: I have copied & pasted the following from my Myspace blog. I don't typically blog there but I have only told about 4 people about my blogsite here so I had to blog there to get this information to as many people as possible so I can stop telling the story over and over. Okay here goes:

My doctor said he always knew I was unique but that now I was just taking it too far. Some of you know a little and some of you know none so I'll start at the start.

I've had a big "thing" sticking out of the side of my neck that only I ever really noticed for years, I can't recall how many. I'd asked a couple of my doctors if I should do something about it but they said no some people just have big lymph nodes. So about a month or so ago I was at my ENT (ear, nose, & throat) doc about my sinuses. He's been my doctor for 13 years and has done 2 sinus surgeries on me. We have a great rapport and I trust him, kind of a big deal for me. I casually asked him how bad it would hurt to remove this pesky lymph node. He wanted to know why and then he felt it. Then he wanted to stick a big needle in it right then and there and see what was up. I'm not afraid of hardly anything medical so I say go ahead. As soon as he stuck the needle in I knew something was wrong. He said it's not a lymph node. Black fluid was in the syringe and I said what the hell? He said it was probably old blood and that he thought what I had was a second brachial cleft cyst. It's sort of a birth defect thing, no big deal, but it has to come out.

Fast forward to my surgery one week ago today. I wake up and find out it isn't that. He doesn't know what it is. He and the pathologist think it looks weird. The pathologist suspects that it's papillary thyroid cancer and my doctor still thinks it's some sort of benign cyst. So I get the call this morning that the results are in. It's cancer. It is papillary thyroid cancer but not like normal. This is where I'm rare times 3. It's rare to have a congenital cyst (meaning I was born with it), it's even more rare that it would be in this particular location and even rarer still that it would become malignant. Hence rare times 3. He did take a few large lymph nodes that were near this thing and they tested negative for any malignancy so that's good. However, within 2-4 weeks I need to go back into surgery to have my entire thyroid removed and all of my lymph nodes from my central & right neck & a few from the left side. First I have to have a PET scan to see if they can detect that it may have spread anywhere else like my lungs. This is where I'll take all the prayers I can get. So from what I understand so far if you were forced to have cancer but you got to pick what kind to have you should probably pick papillary thyroid cancer because it's pretty easy to get rid of. The fact that its source is in a cyst makes it rare and complicated and weird but I think it's still going to be okay. I trust my doctor a lot and think he's pretty smart but my mom and husband want me to get a second opinion and my doctor has said that he would understand and support that. He is going to get me in to see an endocrinologist ASAP and will set me up for a second opinion at KU with their thyroid oncology board. He wants to see if his idea of how to handle this concurs with theirs as well. He also gave me the name of a world-renowned thyroid specialist in Kentucky who I will be e-mailing to see his suggestions. I read something online that said there have only been 266 cases written up worldwide where people have had this condition. So I guess I'm nothing if not unique. :) It is a little bizarre to me and I'm not sure how I feel. Maybe it isn't real to me or maybe I'm just that stone cold (hardy har har). I just keep researching and finding out as much as I can. So if I don't respond to you via e-mail or myspace or phone or whatever just know it has nothing to do with you, I'm just a busy little bee right now but I need your prayers.