hello there - Secondary ACC

  • 3 replies
  • 11 subscribers
  • 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 with sinus blocked
  • scan done and heyho ACC on lung - radiotherapy  
  • obviously a lot older 
  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that 33 years after having ACC you have recently discovered that it has spread to your lungs.

    I haven't had this type of cancer but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

    I can see that you've joined the main head and neck cancer group so it might be an idea to also post there as it's a busier group. You could also join the secondary lung cancer group and see if there are any people there who were first diagnosed with ACC.

    If this is something that you'd like to do, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here, and join in with existing conversations by clicking on reply.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.


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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Sorry, I thought I'd replied to this just after you posted. Brain fade Slight smile

    Take a look at the web site of Salivary Gland Cancer UK: https://www.salivaryglandcancer.uk/

    The charity is very active, arranged in person and zoom meetings twice a year, has lots of links to information and is a great place to compare notes with other ACC patients. 


  • Hello Joadie, I understand you very well. I also have mets in my both lungs. But my doctor said me just to keep the eye on them and if they will be bigger and cause any symptoms then he reffer me to Christie. How many mets do you have? And what sizes? I have four mets and they are less 1 cm.