Since Thomas has MTC, most information on this site will at first be about MTC but we will add more content over time covering all types of thyroid cancer.
The majority of MTC cases (75-80%) are sporadic; however approximately 20-25% present as hereditary. Hereditary MTC patients must be tested to see if they are MEN2A or MEN2B and all of their offspring must be tested for MTC as well as they will have a 50% chance of having MTC.
If any direct offspring test positive for MTC, their offspring must be tested as well, and so on. The earlier MTC is detected and treated the better. This includes a total thyroidectomy of young children since testing positive effectively means a 100% chance of developing MTC during their lifetime.
Sporadic MTC (non RET gene mutations) have no chance to be passed to the patients offspring and they do not need to be tested.
Sporadic MTC can have HRAS, KRAS and NRAS gene mutations for which there are currently no targeted therapies like there are for RET positive mutations. Funds for research for treatments of these mutations is desperately needed!