Hello ACC in my Trachea

Hi all I was diagnosed in March 2020 with ACC in my trachea (start of the pandemic) I had a debulking and radical radiotherapy which left me with a few swallowing issues and still fatigue.

in June this year I was told that I now have nodules on my lungs. I was devastated to find I now have metastatic disease. Having been reviewed at MDT with the surgeon surgery is not an option too small nodules and too wide spread. On Friday I went to Christie’s to see Dr Metcalfs team and this is when things have finally hit home on how rare this is and how limited the treatment options are. am now trying to work out what this means and how I live with it.

and I have everything crossed that the team can give me some light at the end of the tunnel and perhaps find some targeted therapy 

Any  advice welcomed xx

  • Hi I’m really sorry that you have mets so soon after discovering that you had ACC. They generally grow really slowly and it can be many years before they cause any symptoms so try to    not to worry too much (I know that’s easier said than done)  Dr Metcalf is looking at various clinical trials and is in contact with ACCRF in America, like you I’m hoping for a break through in the treatment of lung mets. I also have too many for surgery or brachytherapy and there are not really any options in the uk. I’m on watch and wait but I really wish there was something I could do to stop them growing further. Make sure you get regular ct scans and try to get on with your life the best you can. 

  • Hi 

    thank-you so much it’s all rather scary but have taken some time off work to try and process things.

    feel a little less alone now I have discovered this forum, it’s hard when your a planner to feel there is no plan Disappointed relieved

    take care x 

  • I know how you feel, you just want to DO something not be told to wait and see. It goes against all  you hear about cancer treatment. Taking time off work is a good idea, do something you really enjoy and take some time just for yourself. All the best 

  • take care, here if you need to vent at any point xxx

  • Hi

    i also have in my trachea I’m having a windpipe resection in 6-8 weeks as I have been told that’s the only thing they can do for me I’m very scared as it’s such a rare place not much information at all about any of it which makes anxiety even higher so I understand how you are feeling the unknown is very scary,

  • Hi 

    it’s definitely not an easy disease to find information on, I didn’t have a resection due to size position and Covid. Good luck hope all goes well.

    What I am learning is that the most important thing is to keep putting one foot in front of the other and taking one day at a time xxx

    take care big hugs x

  • Yes definitely xxx

  • I am 12 years post diagnosis. I have had lots of treatments. You can live a long time with this slow growing disease and enjoy your life along the way. Keep up with ah all the research. Hope you are going to the SGC meeting in London on October 9 th xxx


  • Hi Ruth 

    my nodules in the right lung continue to grow, I would be interested in what treatments you have had, 

    I won’t be add the session on Saturday but hopefully will log in via zoom 

    take care 

  • I had RFA many times and tried Lenvatinib atra 

    I hope to join on zoom on Saturday x