Hello, Newly Diagnosed

Hi, I was given the news today that the stenosis in my trachea is ACC but it is inoperable and I'm awaiting a PET scan before treatment is discussed.

I'm really trying to be positive although everything I read leaves me feeling that my outlook isn't so great (some say it's slow, others say it's aggressive).  I've great support from husband and family but no one knows what you're feeling like others who have been through something similar and the nurse today directed me to Macmillan.  So here I am.  

If I don't respond for a bit it's because I'm catching up on desperately needed sleep Slight smile

  • Should I be seeking a 2nd opinion on whether surgery is possble?  How do you go about requesting this?  Thanks for any helpful direction.

  • Hi

    I had a section of my trachea removed because of an ACC tumour 7 years ago, followed by radiotherapy.

    The gold standard treatment for ACC trachea is surgery if possible, followed by radiotherapy. Did they say how much of your trachea is affected?


  • Hi Barry,  thanks for your reply.  No they said it was inoperable because of the extent within the lower trachea and the tumour cells present in both bronchi. The consultant showed the CT scan and we didn't think to ask more specifics at the time.  Only after reading a bit did I realise surgery was preferred treatment. I did panic a bit when I wrote the post having only just been diagnosed (Papworth). 

    I'm being referred to ENT also and awaiting the PET scan. I don't quite understand the ENT referral.

    How do you even go about getting a 2nd opinion? I'm not distrusting the consultant's judgement and it's major surgery.  I'm presuming with the few cases of Tracheal ACC that specialists aren't in every region.  I've Hashimoto (underactive thyroid) and don't cope well with stress - all types, so on reflection if I'm a borderline case - it may not be the right path for me.   I've kind of accepted what will be, will be. Not being defeatist but I don't want life to become a battle - especially if it the ACC is elsewhere.

    Sorry for the ramble. Thank you so much for your reply.  I have many questions but the answers I've read all seem to be unknown (it depends etc) at this point. 


  • 7 years, that is wonderful that you are doing well and were able to have the resection.

    If I need to ask deeper questions about this, would you mind? 

  • Hi Cath

    I've heard good things about Papworth so I reckon you're in good hands. Re a 2nd opinion, you should say to them that you know surgery + radiotherapy is considered the gold standard first line of treatment, but just to bring as many minds to bear on this as possible, you'd like to canvas a 2nd opinion. Guys do good work, you might want to scout around for other names who do big tracheo-bronchial surgery - it is a while since mine so I'm not up to date with the best surgical centres.

    A PET scan will show you the places where the tumour is active and that will give you anfd the surgeons and oncologists lots of useful info.

    Not sure what the ENT referral is for. Wait and see on that one. I was of the view that the more people they wanted to refer me to, the better. I wanted all the big brains to have a look at their particular area and give an opinion.

    Feel free to DM with more questions as they occur, it isn't a straight line - things crop up at random times that you wish you'd asked previously.

    At Derby I found the (lung) clinic nurse was an absolute star (Hi Nurse Sally Rowe!) and Sally was and is always helpful and informative when I needed to get a question through to one of the team, so you may have a similar character at Papworth.


  • PS, I don't know if you know of www.SalivaryGlandCancer.uk ? There is a zoom meeting for patients, carers, supporters and anyone interested on 31 July. Have a look at their web site and if interested, email Emma at hello@salivaryglandcancer.uk for the zoom invite. I wasn't sure about joining in at first but I have found the group enormously helpful and supportive. It is very friendly, informative, and good to see a bunch of people with the same condition. Some recently diagnosed, some going back 15+ years.

    (ACC is a secretory gland tumour, related to salivary gland cancers. A lot of people who join the zoom meets [and in person until Covid] have had tumours in the head and neck salivary glands, but quite a few have tracheal and bronchial sites too).


  • Hi Barry, thanks so much for both of your messages and the helpful info - sorry for not replying sooner (no excuse but we have a young puppy that is both adorable and demanding as well as a great source of joy right now).   I will have a look at the salivary gland website.

    I have both the ENT and PET/CT scan this week so hopefully more information should soon start to fall into place. 

    I had a bit of a meltdown yesterday and have to say the nurse I spoke with at Papworth was a star listening to me and answering the questions I had.

    Thanks so much for taking the time to get in touch.


  • No apologies necessary - this is a roller coaster ride and we all get to scream sometimes! I've been there. Feel free to ask questions :)

    After your PET/CT when you see the consultants, there will be a lot of talk about radiotherapy. You might want to ask about Carbon Ion radiotherapy (now available at I think Guys and the Christie in Manchester). A lot like regular radiotherapy but because of the way it works they can get more of the treatment power on the target and there is less damage to any surrounding tissue.

    Everyone is different and every case needs different treatment to the next, so nobody here will be able to say what will be right for you - that will be for you and your consultants to work out. Having said that, there is an awful lot of experience in these forums. Whatever you've got, there's probably someone who has had something similar.

    I'm glad the nurse was helpful, a good clinic nurse is worth their weight in gold.


  • Hi Barry

    Thought I'd drop by and update where I'm at.  I've now had a stent fitted - taken in as an emergency case which I feel grateful for at the moment, especially since so many surgeries are being cancelled due to staff shortages (pinging etc).  The procedure went well and my breathing has much improved, now just dealing with some of the after effects of surgery.

    I've had a look at the salivary gland cancer site, thank you so much for mentioning this,  and found it very informative, particularly about the treatment options.  I didn't manage to join the zoom meeting as there was so much going on but have today joined the network.  Lots of really clear and helpful info.

    After the stent procedure a specialist oncology nurse said that my recent PET scan revealed no other uptake sites and uptake for the tracheal site was 4.4 (i think) so a little above 3 which I was told is low uptake and likely indicates the ACC is slower/less aggressive.  I have since read that low uptake cancers (like ACC?) are sometimes hidden within normal cells and so interpretation of the scan can vary.

    The nurse I spoke with said that in the notes from the MDT mtg that combined radio and chemo therapy were to be suggested.  From what I've read on the SGC site chemo doesn't seem to yield much and it's not something I'm keen to undergo as my immune system is already dysfunctional with an autoimmune condition.  Both my husband and I have  seen people go through chemo hell with no improvement to quality or quantity of life. However, I will try to keep an open mind but have more interest in whether I'm suitable for accessing the specialist radio therapy treatments - like you've mentioned.

    Thanks again for all your thoughts - they've been a great help.  


  • Hi Cath

    Great news on the PET result! Yes, ACC is a slow grower which I guess does give us time to plan the next stage and get our heads around the current situation.

    The stent must make things a lot easier on the breathing. I have never had one so I can't give you any hints and tips on that, so do share anything you learn or how it feels - who knows which of us may pass that way later...

    Chemo is not routinely used on ACC but there are a number of trials going on if the tumour has particular genetic mutations. Have a look at Dr Rob Matcalfe at The Christie in Manchester. He appears on the SGC web site. Great guy doing amazing work.

    Keeps us posted on progress and all the best.