Rare Cancer Support Forum

John, I have had some success in finding others with very rare cancers through the story section of our website. If you would be willing to share your story in that section of the site, it may help others with your cancer find you. You can read some other stories in this section by clicking this link:

I have just joined this forum so my entry is years after your postingss- I too have had amc, on my skull- it was removed . Radiation was not recommended. This cancer is suupposed to be agressive and returns but mine didn't return in that location. But it has metastasized to the bone (also a rare event for this already very rare cancer) So we are now dealing with that situation.

What we have found out is that amc mimics breast cancer so therapies are those used to treat breast cancer. The whole situation is very complicated, and nobody really knows what to do- as you have found out amc is extremely rare.
We also are investigating various gene sequencing tools to identify effective therapies.

Your original postings are several years ago. How are you doing now?