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Adenoid Cyst Carcinoma - lump on leg

GB1976
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Good morning.

Diagnosed with a rare saliva cancer found in my leg this year. Thought to be just a benign cyst. 
Just had second op to hopefully get clearance. Nothing found elsewhere on PET or MRI neck. Mammogram showed cysts but not concerned so nothing biopsied. 

Any others patient or professsional have any experience with this?  

Thank you 

 

  • I'm sorry you were diagnosed with this rare cancer GB1976 but the good news you've received from your scan results sounds really encouraging and hopefully the operation you've just had will be successful in getting the clearance. 

    Unfortunately I couldn't find anyone on the forum at the moment who has had this type of cancer but we do have a very supportive team of cancer nurses you can talk to about this on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very knowledgeable and will do all they can to answer your questions and give you any information you're seeking about your diagnosis.

    You may also be able to get further information and support from Salivary Gland Cancer UK.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Offline in reply to Moderator Steph

    Thank you for your reply. If anyone does that would be nice to get intouch with. I've only come across one other this week who's experienced this in the limb! They are in America!


    Now I've had the op I feel relieved but still have to wait until next week to find out if clearance was achieved and if further treatment is required. Feels like forever! 
    Do you know the main lead specialists in the Uk for this or how I would find out. 
     

    thank you 

     

  • Offline in reply to GB1976

    Hi,

    I was diagnosed with adenoid cystic carcinoma of the breast in August. There is a good website for information called the adenoid cystic carcinoma research foundation. It is worldwide but they have a list of recommended doctors which I have only just discovered and lots of them are based in the UK, a lot of them say their sub speciality as well as many of them are just head and neck. I am not sure exactly how involved in ACC many of them are but I also found a website for a Dr in Manchester who focuses all his research on ACC but I am not sure yet if he is just involved in head and neck cancers. Hope you got clear margins, I got them after my second surgery. Good luck

  • Offline

    Hi GB1976

    I was diagnosed with ACC in my right thigh in 2018 - original location was right parotid.  The reason you can't find anyone is there may just be 2 or 3 of us world wide - ACCOI told me of just one at the time of my diagnosis.  Happy to help or answer any questions.

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