It's back! 8>( ACC

I was diagnosed with Adenoid Cystic Carcinoma in my submandibular gland back in Dec 2016. I went through surgery to remove the cancer and had had 33 sessions of radiotherapy as a precaution.

I recently noticed a lump under my tongue and after an MRI and needle biopsy it was confirmed that the cancer is back! (April 2019) Im absolutly gutted. Im a positive person but just dont know how to react or even act! The more i research about ACC the more i read about it coming back.

Im just awaiting a CT scan then have an appointment at the end of April to go through the next steps.

All i have been told so far is that surgery will be involved, maybe including a skin graft from my forearm. They will operate from inside the mouth not like last time which was from the outside. Im so scared!

Does anyone have any experience of this type of cancer/surgery or process? 

  • Hi there

    ive recently just had my eye removed because I had an ACC Tumor behind my right eye. Im still in shock about the whole situation. My advice is to stay strong stay positive and appreciate the positives that they are offering you treatment and that it has come back somewhere that surgery is an option. Keep your chin up, it looks like I’ll be facing this cancer again in the not too distant future. And I will follow my own advice then. It’s a hard unfair cancer. I always say why not me. And live every day to the fullest. 

  • Thank you for this and im so sorry you had to have your eye removed. I think its because i only got told 6 days ago and nothing is hapening now until the 29th. Hate that waiting part, and telling people. I try and look at the positive things, its just that scary fear of the unkmown.

    Do you mind me asking how old you are? Was going by your user of 1982 suggests you've got it at a similar age.

    I did a journey last time round to keep me busy (and so that i didnt have to inform every individual everytime i had an appointment haha) 

    If you are on facebook, I have a page called 'Toria's Journey' that you are welcome to look ar if you like.

    Id love to hear about your progress etc.

    Vicki

  • Yes I’m 36, I’ve left my number on one of the chats. I’m 36 with 2 small kids, living in Leeds. I’ve spent all my life being happy to help anybody in any situation. Now I have this cancer I am offering myself to the cancer nurses to be someone they can use to chat to people newly diagnosed to help talk through the stress of diagnosis. Phone me anytime or message and I’ll be happy to help.

  • Hi Mayde 

    Are you a member of head and neck cancer group chat? 
    Toria and loads of others are on there. It's the best place to get lots of info. 
     

    Head and neck cancer support group