prognosis for Medullary Thyroid Cancer

[batterup100]

My sister (42 years old when diagnosed) has Medullary Thyroid Cancer.  They originally thought she had Graves Disease, but when they removed her thyroid, they found the cancer during routines biopsies.  She has had her second surgery to remove the lymph nodes in both sides of her neck and to do the disection of the right side tissues.  During that surgery they had to remove the jugular vein on the right side as it was taken over by the cancer.  She has since had radiation localized in her neck but still has a calcitonin level of 60'ish and it has been 4 months sincer her dissection surgery.  

My questions are:  
What is her prognosis?  She just turned 43 years old and seems to have a reoccurring problem with the level of calcitonin.  She is having a scan in September, but, to be honest, I have no idea what they are looking for.  I just know they are scanning the neck and chest area.  

The tests indicate this is not a hereditary form of the disease, but all of the women on my mother's side of the family have thyroid diseases (goiters, hyperthyroids, partial or full thyroid removals, etc.), although none confirmed as cancer.  Should I get tested for this disease?  If so, what sort of tests should I ask for?

[Mark Lupo, M.D.]

It may take more time for Ct level to decrease after the ? external ? radiation treatment (I assume it was not I-131 treatment) -- would give it at least 6 months post radiation to re-eval.  Prognosis is still very good.

Would consider a thyroid ultrasound but if sister is RET negative, it is not high risk for you (and other family members) and probably is unrelated to the rest of the thyroid family history.  A serum Ct level would be reasonable as well for screening - particularly if a nodule is seen on thyroid ultrasound.

[batterup100]

Yes, the radiation was external.  Thanks for the heads up on how long we can expect to see Ct levels.  It was not only informing but comforting.

Thanks, also, for the time you spend answering medical questions for total strangers. . .it is a real service to those of us who are not able to go to the doctor's visits with our loved ones.  Questions like prognosis are not exactly on the agenda when speaking to a cancer patient.