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See how rare it is only me here!!!!
If you Join please pm me,
At last I have found other people in the UK with ACC! I am still getting the hang of how this group works, but would find it really helpful to correspond with others affected by this - so far have only found one other in the Uk! I had a primary ACC tumour removed from the top of my lungs / bottom of the trachea in March of this year - apparently a rare tumour in a rare place. I lost my left lung along with the tumour, but have recovered well. I had planned to go back to work in a few months, but have just found a lump in my breast, so am holding my breath waiting for an appointment at the breast clinic to see what lies ahead. I have found a YAHoo group that was helpful, but most members lived in the US or Canada where the heaalth system is just so different. Would love to correspond with anyone out there affected.
My husband was diagnoised with ACC of the Salivary Gland in April last year, unfortunately it had already spread to his lungs & Liver by the time it was diagnosed. You are the first person I have found with ACC except for a man who was diagnosed not long after Laurence was and we met his family and spoke with them but he himself didn't want to meet as he didn't want to know what would happen.
You want to talk more just message me.
I have acc of the submandibular gland and have had the gland removed , a neck dissection and radiotherapy.
I have lung mets and today my consuktant has agreed I can have 6 monthly CT scans and referral to London for RFA treatmnet to mets if they are a suitable size.
You seem to have done well following your surgery. i hope your breast lump turned out Ok
How old are you? I am 58
Ruth age 61 acc R submandibular gland
There is plenty of information about acc and treatments on the accrf or accoi sites
They are based in America I live in Bristol in the UK and have not found others in the UK
I am going to a european meeting in Germany on October 29th
best wishesand how did it go with your brest lump?
acc submandibular gland in 2009 followed by neck dissection and 6 weeks radiotherapy i now have lung mets but feel very well and have 6 monthly CT scans
which I had to persuade my consultant . he agreed because I had information and research to back up my request
My husband had ACC in his sinus 3 yeas ago but its back now behind his eye, we have been referred to London because its not operable and the only option is cyber knife, consultant yesterday said that they have to weigh up the pros and cons of using this treatment because it could well harm the vision in his left eye, so bit of a rock and hard place really. Still we thought he had months and now it seems its years so I actually feel very positive today. Ok so I'd like longer but at least we get to enjoy some time together for a while longer :))
I have now been referred to London for RFA treatment for my lung mets
I have heard you can have radiation treatment for your kind of acc. Try looking at the adenocystic carcinoma organisation international web site and in the yahoo support there is some info there.
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