ACC biopsy

Hi Shane, I’m Celia and my tumour was in my orbital floor just below my right eye. I had my surgery 7 years ago and like you have lost my eye. I had a biopsy carried out before my surgery. A few months ago they discovered a small lung tumour, this too was biopsied. My understanding was that although the tumour was small, and likely to be ACC (it was) that I had a history of smoking and felt it was important to rule out any other tumour. I have the greatest respect for the surgeon who carried out my surgery and still supervises my care. He explained that ACC has a propensity for travelling along nerves - and warned me off reading too much on line, explaining that the numbers in many studies are low, but has always been free to discuss my concerns. I hope things go well for you!  Celia

Hi Celia

Thanks so much for replying to my post. Can you explain a bit more about the numbers being low? Does he mean that the numbers of people in the studies are low so therefore unreliable. My oncologist has told me he expects my Tumor has been present for about a year. I don’t know if that is good or bad to be honest. I’ve read a lot of people have had these Tumors for 3-4 years before they produce pain or symptoms to lead to them being discovered. I hope they have a good treatment plan for you regarding the lung module. 

Yes I understand that many of the studies have fairly low numbers of participants as ACC is not very common and it’s better to read these with a good knowledge of statistics. I also understand that most ACC is slow to develop and that often they use a ‘wait and watch’ policy. They removed my lung tumour surgically because it was in a good position for that, but I believe radio ablation is often used. I also have one in my neck that has been there from the start - it showed on the PET scan but it has barely changed in 7 years. I think it’s good that these tumours are slow growing and I think it,s where the tumour starts that determines how quickly they are identified. I saw my oncologist originally, and for a while following my radiotherapy - the early years were a bit of a pest as I was attending the oncologist, an ophthalmologist, an oral surgeon and my head and neck surgeon. I only attend the head an neck surgeon now and that suits me! Cheers Celia

Thanks for the reply Celia, fingers crossed we both go on with many years to come. Take care