Numb Chin Syndrome - feeling terrified
I hope this is OK, I am posting this on behalf of a dear friend with MBC, Maria. Shes sitting next to me as I type this but is feeling too overwhelmed to do this herself and asked me to post.
Maria is 53 years old and was diagnosed stage IV in 2015. She currently has mets to her liver and bones (mainly bones in the legs and hip). She has been on ibrance, Verzenio and Piqray.
About a month ago she started experiencing a bit of numbness in her chin. It came on randomly and has spread to her entire lip area (top and bottom). MRI of the brain was clear, she is waiting for a jaw MRI but no date yet.
We made the mistake of googling and came across numb chin syndrome, which apparently has a dire prognosis of months. Maria is now convinced this is what’s happening and she is terrified and overwhelmed.
There is such little information online so she wanted to post here in the hopes that someone else has come across this or knows something. We’re both confused and had a few questions:
1) why is numb chin so dire? The few websites I found cited NCS as the first sign of a metastatic disease and that people would often die within months of diagnosis, but what does it mean for someone who already knows they have MBC?
2) If numb chin is caused by new mets in the jaw, is this bone or brain mets?
3) Can bone/skull mets turn into brain mets?
Thank you all in advance, we are both so worried