Is ACC a slow death sentence?

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 a course of radiotherapy to prevent its return. 

I've been searching all around the Internet about this ACC and all I've found just sounds like it's a slow death sentence :( The likeliness of return is high as far as I've I've been reading and the consultant has also told us. 

Is it as bad as it sounds? My partner is 31. I'm really, really worried for him. Has anybody ever had ACC that hasn't returned? If it does return, will it keep returning his whole life until he dies? 

Sorry for the negativity I dont want to upset anybody I'm just so worried and not finding any good info on this at the moment

  • Hi  and a very warm welcome to the online community which I hope you'll find is an informative and supportive place to be.

    I had a different type of cancer but there is always the worry of recurrence no matter what type of cancer you have. My best advice would be to take just one step at a time and try not to think about what might happen but just concentrate on what is happening. It sounds like your partner's consultant has a treatment plan ready and even if it does recur there is likely to be further treatment available.

    I'm 'tagging'  into my reply to you as I can see that she posted 7 months ago about having a windpipe resection. I'm hoping that she will pop on and share her experience with you.

    I hope you don't mind me suggesting that you also join the carers only group which is a safe and supportive place to discuss your worries and emotions with others who have a loved one dealing with cancer. If this is something that you'd like to do clicking on the link I've created will take you straight there where you can join and post in the same way as you did here.

    It would be great if you could pop something about your partner's 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.

    (((hugs)))

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  • Hi sorry to hear of your partners diagnosis. I can recommend the Accrf website and also the salivary gland uk website it does have som positive stories of AcC trachea survivors . My mum has survived 20 years treatment has improved and is improving all the time and many getting diagnosed now wlll not have to go through as much as she’s gone through because surgery , treatment radiotherapy has improved so much best wishes to you all he is young and strong I’m a theatre nurse and I see the most amazing surgeries every day you are in good hands I’m sure xx