MYH mutations

Has anyone here been diagnosed with MYH mutations? I have had 7 surgeries trying to hold off precancerous and cancer tumors, as well as Paget's skin cancer. Hoping to find someone else with this mutation on the colon genes. Not that I would wish it on anyone... just feeling isolated and like I am teaching the docs and finding the research... there is just so little known about it.

Thanks, and God bless