hello I’m Shane Diagnosed with ACC within the right orbital area behind my eye. I’ve had the eye removed and a craniotomy to remove the optic nerve within the brain. I am waiting on my pathology results on the 13th. My question if anyone can answer...
Hi Everyone, There is a gathering for all patients and carers affected by ACC and other salivary gland cancers in October in London. I am an acc patient and there are going to be other patients and carers there. It's a chance to meet people in person...
After a 11 year battle with ACC my 30year old daughter is not doing well. After 7 years of bracethrephy treating her lung mets she now has trouble breathing. She's on a O2 concentrator at 8 LPM. She has pulmonary hypertension as a result of her damaged...
Hello Everyone, Just wanted to let you know of a meeting in Manchester and online on Sat March 8th. It's a chance to meet others, ask questions and hear some interesting talks about how support services and how genomics can potentially help treatment...
Hi everyone, We’ve launched our annual survey for 2024! We want to hear what you think about the Online Community. The survey should take around 15 minutes to complete. The survey is anonymous. Please complete our survey here. This survey is designed...
Hi, everyone. It is nice to have a group so that we can share some sad news. I just had given the bad news on 27th July that I got this uncommon ACC cancer. But still wait for ER, PR, HER2, CK5/6 and CK/14 which. Does anyone know if it’s normal for this...
Dear all, I start this thread for those who want to join the conversation or share experiences, best regards
just looking for resources and research 33 years ago massive facial reconstruction due to tumor on cheek. ACC STILL here, very positive person got on with life, even walked back into classroom to teach 6 months later BUT 18 months ago went to GP...
Concerned that there are so many ACC sufferers out there with no relevant support. This post trying to stimulate interest and posts
Hi everyone, We’ve launched our annual survey for 2022! We want to hear what you think about the Online Community. The survey should take around 15 minutes to complete. The survey is anonymous. Please complete our survey here. This survey is designed...
