OK, I know everyone has a unique story, but I am so frustrated by my Doctors, maybe it is the "CANCER" diagnosis or "standard care" or "lack of care" from the MD's??? Maybe someone out there has a similar experience or can put it perspective for me.
So here is my story;
In 1985, my MD diagnosed me with Hypothyroid and I began taking Synthroid for 21 year. 4 years ago, during a routine physical, my MD stopped the Synthroid, stating I now was too low. So for 4 years I did not take any Synthroid. During my annual physical last year my MD noticed a lump on my right thyroid and ordered a ultrasound. During the ultrasound,I asked the technician to check the left side, because I could feel a lump on that side also, she did and noted a goiter on the left and a hyper-vascular mass on the right. The MD then ordered a biopsy on the right, stating the left was just a goiter. The biopsy came back undiagnosable, but my labs were still off. The MD then referred me to an Endocrinologist. He repeated the ultrasound and a biopsy on both sides, after I insisted he check the left side also. Again I was told the left side was just a goiter. Again the test came back undiagnosable. The Endocrinologist wanted to wait and test again in a few months. I had another ultrasound and the goiter on the left had grown and the hype-rvascular mass was the same. I was then referred to a surgeon. It was my husband that asked the surgeon if we could just remove the entire thyroid, if radiation would affect the future test results on the left side, and I had been on Synthroid before, it just made sense to be done with it. The surgeon agreed. In April 2010 I had a total thyroidectomy. The surgeon stated she did not see any thing questionable, other than the hyper-vascular mass on the right.
A week later the pathology report stated the left thyroid was positive for medullary carcinoma pT1 Nx, Stage 1. The surgeon, as well as I, was very surprised.
Now the questions begin. Everything I have read states the lymph nodes should be removed, at least on the affected (left) side. The surgeon states I do not need additional surgery to remove them due to the carcinoma being less than 1 cm. But did not really check them because cancer was not anticipated. I will be having lab test next month to check my calcitonin levels, which the surgeon anticipates to be normal. So, if the calcitonin level is high that means there is still cancer somewhere? Where does it go, the lymph nodes, then the lungs and liver? Do you feel the MD's are doing what is needed or should I get another MD as my husband wants me too? I understand there are 4 different types of medullary cancer. MD has never stated which kind, or testing to find out, I have 2 daughters and sure do not want to pass this on.
Sorry for all the rambling, just wanted to get my story out.
Any thoughts or ideas are appreciated, I think I'm still in shock from the prognosis and unsure about what I read because I don't know what type I have or even if it matters.
Thank You for letting me vent!