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EndocrineWeb Community Advice

Trying to get answers, but getting nowhere.

From: Aprils3 - 9 years 10 weeks ago

I am 34 years old & I have been fighting thyroid cancer since 2009. That was when I was diagnosed, had a 5 hour surgery & my right vocal cord was paralyzed due to the size & integration of my tumor. Within months I had regrowth in the thyroid bed. But doctors waited until 2011 to do another surgery when they discovered my cancer had gone metastatic to my lymph nodes. So another 4 hour surgery was done, a right sided lymph node resection. A week later I had an infection & was taken back into surgery to clean a superficial infection. Due to those surgeries I now have surgery induced asthma. Unfortunetly the cancer is back again & I have biopsies scheduled for next Monday. Biopsies don't really matter though because last one gave a false negative. I now have bone pain & my ribs are killing me, so I am requesting an MRI today to verify that it has not spread to my bone now. To top it off I have almost no uptake for the radiation iodine, so that as a treatment is no longer an option, and my thyroidglobulin level has never been able to be used as a marker, because it has never gone down since the first surgery. After all this the part that frustrates me most is my doctors. My endocronologist is the best in Tucson & I am thankful to him. But my other doctors have now become useless, if I catch a cold they send me to him. I just want answers to the constant pain, headaches, fatigue, and irritability that some I do know comes from my diagnosis, but not everything can be blamed on that. I am the mother of 3 teenagers, work full time, and help with my dad who is being treated for colon cancer.. Please someone out there tell me you found a resolution..

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Hi I saw your post and I thought offer some info. I am 35 & a father to 3 girls. I have had thyroid cancer for 7 years. 3 of which no one new what was wrong with me. Some people close to me even thought that because the doctor couldnt find what was couseing my symptom that i might be fakeing. I even started to question my own sanity But really what it was is that the doctors didnt know about this type of cancer. So when they performend the standerd blood tests and everything looked ok they assumed that it wasnt that serius. You have to know what types of test need to be done and what to look for. Needless to say the cancer had spread thru most of my body before it was fund. The pain and lack of energy is part of having the cancer Sorry to say. From your post I could not tell but it sounded like u haven't been told what type of thyroid cancer have. Or maybe you have. But if u don't I can tell u that from what you say that it sound like you have the same type as me. Which is called medullary carsinoma. Or in my case MEN2. this type of cancer is different them most types. The first thing is that it is a cellurer type cancer. This mean that it will continue to reapear. This cancer is one of the more rarer, more aggressive, & harder to fight. A vary important thing to know about this cancer is that it is a genetic type and there are two was to get it. 1 is past on thru your genes. Or 2 it is the speradic type. If you know u have this type of cancer then u most Likely know all this. But if you don't then you should talk to your doctor have him check you calcitonin levels a level of 5 or higher is bad. Most of the time one of the first signs is that you thyroid levels don't move up or down much. This give the doctor a false indacaition. This is called a cold thyroid. If you haven't seem a genetic counselor u need to. This type of cancer can be past on to your kids so if it is this type they would need there thyroids removed as soon as possiable to try and limit there chances of getting it. Oh and another thing this type aid cancer does not take up radiation so keamo want help. Most doctors don't know much about this cancer. And a lot of the time your blood work for the most part could look good making the doctor think that it ok. But once they know what to look for then the real work starts. I hope that this helps you. I don't want to continue on if this is stuff you already know. I will subscribe to this talk so If you have more questions i will know. Try and stay strong. I know how hard and frustrating it can be trying to be there and be strong for your family and friends. Anyways please let me know if this helped or not. If u know what type of cancer you do have and it not this type then maybe I can still answer some question about that kind. Take care and have a great day. Oh my name is Jeremy take care.