Rollercoaster ride

sandralee Member Posts: 1
edited March 2014 in Thyroid Cancer #1
I was diagnosed with toxic multinodular thyroid one and a half years ago, after having a radioactive scan, I was told that I was not a candidate for RAI, nodules would not take up radiation effectively. I had to stop my meds-levoxyl and was told they could not do any needle biopses and cancer was extremely unlikely. I have several nodules both cold and hot and one side of my thyroid is 5x its normal size and the other is 3x. After being hypothyroid for near 20 years I am presently hyperthyroid-- a REAL rollercoaster!! The same endo has me on Tapazole(anti-thyroid med) with plans after lowering my thyroxine levels plans to do RAI rather than thyroid surgery. Still insists that cancer is unlikely, and says thyroid cancer is extremely rare. Since my family has experienced cancer in many forms, I am quite fearful. Also, do not understand why RAI is now an option when is was not previously. Has any one been here? Considering an opinion elsewhere. Thanks for listening.


  • gacbacker
    gacbacker Member Posts: 14
    I know the rollercoaster all too well....I am almost 22 years old and was diagnosed with thyroid cancer about 7 months ago. I had a thyroidectomy and then the RAI at the end of the summer. I know how hard things may be and how scared you must be. Why can't they do needle biopsies? Unless you are in poor health, there is no reason why they can't. Tell you endo that yes, thyroid cancer is very rare but that it is even more rare for a 21 year old in perfect health to be diagnosed with it. Don't let him dismiss it. Especially with your history, it is a possibility. Do what you feel inside. I had a doctor who thought nothing was wrong and I was not satisfied because I knew in my gut so I pushed and yelled until they did something. I would really hesitate doing the RAI without knowing what it actually is first....cancerous or not. If it is cancer, they can remove the thyroid and a lot of times you don't need the RAI. I think I just did it for peace of mind. My personal opinion is that you need a new doctor....he/she seems to be jumping the gun and going right to the RAI instead of working their way up. I have pretty much been almost everywhere that you are. It sucks and I never thought I would be dealing with something like it at age 21. I made it through so you will too. Let me know how things turnout.
  • rdjc
    rdjc Member Posts: 20
    Thyroid cancer is rare - but here we are. My surgeon told me the same thing...Nothing to worry about, probably no cancer here. Then when he saw the results of my scan, he panicked and lectured me on how I had a responsibility to deal with this quickly. My mother had breast cancer, so I was terrified of a cancer diagnosis. But we are both okay. The best information I recieved came from a booklet the ACS sent me after I called them. It explains needle biopsies, etc. I had the surgery because we were trying to save one lobe, but when the tumor was malignant, that was no longer an option. If I had to do it again, I would not have the surgery, but only because I had to have the RAI anyway. I also lost my voice for three months...The best thing you can do is educate yourself, because often you will be the expert, not necessarily your dr.
  • klieb
    klieb Member Posts: 2
    I too was on a rollercoaster ride. After diagnosing me with multinodular goiter, the endo and surgeon agreed to do a partial thyroidectomy because the likelihood of cancer presenting itself in the large nodule was very slim. Well, was I surprised when I met the endo for what I thought was a routine post-op visit to find out that the nodule contained cancer cells. The next step was to remove the rest of the thyroid on the right side. The craziest part of this whole thing is that my thyroid was normal!! If it wasn't for my mother who thought my neck looked enlarged, I don't think I would have done a thing about it!! The small right nodule also contained 8mm of cancer. I am 32 years old, I have two young children and I am the 5% of female that get thyroid cancer. I want to live to see my grandchildren- the doctors say I will. I am still getting a second opinion by a doctor a MD Anderson. Kim
  • This comment has been removed by the Moderator