Hello, my Hubby was diagnosed with this rare cancer 1year 6months ago, has anybody else heard of this or knows anyone who might have it, or maybe you have it. I think I'm ready for some help.
I noticed you haven't had a reply to your post yet so I've had a quick look through the forum and found two members who may be able to help. [@Lisa1968]'s partner was diagnosed three years ago and [@trisha12345] is currently undergoing radiotherapy for ACC so hopefully they will pop by when they can to offer their support and advice.
If you ever need to talk things through with our team of cancer nurses they can be contacted on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.
my brother was diagnosed with ACC in October 2019 aged 49, he has had two operations to remove tumours and saliva gland, after the first op he underwent 6weeks of daily radiotherapy, good news is his head is now clear of cancer but unfortunately it has metastasised to his lungs, all they can do for him now is monitor the progress
I've read cases where people have lived for many many years with ACC, which gives some hope. I've joined ACC groups on social media (most cases there seem to be in America and they're treatment seems more varied) but there's people who have live with it since the 90's, so don't give up xx
