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Two week ago, during a routine CT scan, a 5mm nodule in my trachea caught the screening radiologist's eye. I was promptly scheduled for a biopsy. Alas - it is ACC in the distal trachea. The pulmonologist contacted me last Wednesday. He said he would...
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...
Partner was diagnosed with Adenoid Cystic Carcinoma yesterday, in his windpipe. It's small enough to do surgery to remove so they will have to cut off part of his windpipe and re attach it. Awaiting consent from 2 surgeons who have to accept first. Then...
Hello! My name is Nadiia, I'm from Ukraine. Due to the war now I live in Scotland. I have ACC of salivary gland. I had surgery and radiotherapy in 2017. Now I have mets in my both lungs. Approximately 4 nodes less than 1 cm. In Ukraine oncologist suggested...
My tumour was in my orbital floor, removed 11 years ago, and followed up by radiotherapy. At that time I had a node in my neck (still there), and one in my lung. I had a wedge resection of lung 3 years ago, and enucleation of my eye due to radiotherapy...
Hi every one. I had oral Acc 21 years ago and had extensive surgery in 2002. I have gone on to live a healthy life with only a few restrictions ie: limited opening of my mouth and quite a few nose operation caused by the radiotherapy. In August my...
My name is Tony, and I was first diagnosed with ACC about 25 years ago. After a couple of run ins which were sorted by operation it has now come back in several places on my lungs and is inoperable. I've had sabre radiotherapy to push it back a little...
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
