Is ACC a slow death sentence?

Hi HannahR 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' chelle75 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)))

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

Hi Hannah

I'm an infrequent visitor here and your post is now two years old, so I'm sorry for the late reply :/  I had 3cm of my trachea removed 9+ years ago with an ACC tumour and followup radiotherapy and currently have no recurrence or mets. happy to chat if you like.

Barry

Thank you so much for your reply, I cant believe its been 2 years already. Glad to hear that you've had no recurrence and I hope it will be the same for my husband. Its really hard because im constantly worried about re occurance, probably even more than he worries especially as he is a smoker.

Well smoking is a nono obvs :/ I was never a smoker, but my brothers were, along with most people in every pub etc years ago. ACC is not caused by smoking, but with any lung disease, smoking will make recovery much harder.

Did he have surgery and radiotherapy? How is he now?

B.

Yes he's had a resection surgery of his trachea, followed by radiotherapy. They mentioned that he had nodules in his lungs but they said this is most likely just a reaction to the radiotherapy. 

He has no re occurance so far (hopefully never) and follow up scans this week. I always get very scared around this time

Great news that he's doing well. Yeah, scans are always a tough time. The way I like to look at is, a regular scan gives either an all clear (excellent) or a heads up on something needing attention (good). ACC is a slow moving thing so the more advance notice you get, the more options are available.

I have lung nodules too. Very common from radiotherapy I believe. 

I hope the scan and results all go well.

B.