Hi fellow adenoid cystic carcinoma patients, Are you going to be joining the next patient gathering on Saturday May 10th? It's in Sheffield and on zoom too. I am going and really hope to see/meet some of you there. Our 2025 Events (gatherings and webinars...
Hi all oPsting here as I am looking for any positive stories of others who have been diagnosed with this condition. I've been dealing with the NHS in the UK and it's taken just short of a year to be diagnosed. They originally diagnosed me with Lymphomatic...
Hi Everyone l am new here and other than my young children I do not have anyone except my parents I can’t really talk to them much….! Well. At all. I’d just love to be to talk abut similar things. this is a scary journey on your own.
Hi all I was diagnosed with Cancer in March this year. Being on the pathway has been a whirlwind of scans, appointments etc. PET-CT scan picked up a couple of hot spots. I had an enlarged lymph node removed last week to check for Lymphoma. My surgery...
Hi I was told in October last year I had a lump in my saliva gland, After lots of scans biopsies and an operation to remove it which they couldn't do because of the risk of my face bring paralised, I have been told its a rare cancer called basal cell...
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...
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, I have just been diagnosed with adenoid cystic carcinoma . I have a 31mm tumor in the base of my tongue . Ive been told this is chemo resistant , so has anyone had a tumor in the tongue and can advise on treatment , surgery etc?
Hi - recently had a small adenoid-cystic tumour removed from my upper lip area. All happened very quickly and still struggling to process. Went from having a small lump for a few years that suddenly grew and hurt, to having it removed to being told it...
