New Here, Tracheal Adenoid Cystic Carcinoma

KJ2021 over 3 years ago

5 replies
150 subscribers
885 views

Hi, I posted last night on the ACC forum, after getting my diagnosis yesterday, but haven't yet had any replies from people who've been through it with this type of cancer - I wish it wasn't a rare type. I know the waiting part is the same though for anyone recently diagnosed with any cancer and it really sucks. I'm trying to stay positive but it's so hard. I've not been sleeping well for some time, partly through coughing and partly down to anxiety, and so I'm just a wet soggy mess now. I can't fault the speed to get me this far but each stage has another spell of waiting - currently a PET scan before they can determine a treatment plan and the consultant explained that surgery is not an option.

Reading through some of the posts here makes me feel little less isolated though. Cath.

Sporty Nicky over 3 years ago

Hi Cath

Welcome to the forum and I am sorry about your recent diagnosis of ACC. I have ACC I was diagnosed back in 2009, mine started in the minor salivary glands. Yes ACC is rare and this can make us feel more isolated I used to feel like this. All of us here will know how you are feeling at the moment as we have all been there. If I can be of any help to you and you would like to ask any questions about ACC please do.

Best Wishes

Nicky

RadioactiveRaz over 3 years ago

Hi Cath Hopefully someone will reply but you are welcome to come on here and we will all try to help you. Ok side effects might be different but we’re all in this together.once treatment plan is in place things do start to come together and make sense.
we’ve all gone through the waiting period it’s horrible

Hazel x

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

KJ2021 over 3 years ago

Sporty Nicky RadioactiveRaz

Thank you Nicky and Hazel and sorry for not replying sooner. Have to admit that it's been a roller coaster ride these couple of days, you'll know how hard it is to tell family whilst coming to terms with it.

I've come to see that the waiting bit has given me some time to accept it and decide what I want rather than heading blindly straight down an avenue of treatment - perhaps that's usual, sort of seeing some positive in this phase. I'm aware too that there will be days ahead which are even darker but also to enjoy the now.

I'll have a read through your own journeys, it's wonderful to see that you are doing well, thank you both. Cath X

Sporty Nicky over 3 years ago in reply to KJ2021

Hi Cath

Yes we will all understand the early days of a cancer diagnosis is so overwhelming. We have so much to think about and do and come to terms with, our heads can be all over the place. Talking things over certainly helps us understand things better. I wish you the very best.

Take care

Nicky x

RadioactiveRaz over 3 years ago in reply to RadioactiveRaz

Hi Cath yes baby steps care the way to go take everything in small steps snd remember it’s ok to cry rant and stamp your feet. I spent many a hour sat on kitchen floor at 0300 crying.
keep in touch Hazel xx