Rare Tumour

Adenoid cystic carcinoma

Adenoid cystic carcinoma (ACC) is a rare cancer of the secretory glands, most often occurring in the head and neck. This is a place for people affected by this cancer type to get together, ask questions, share experiences and support each other.

Rare Tumour

No. of entries: 16 | Posted on 08 Oct 2009 10:29

Rare Tumour

  • See how rare it is only me here!!!!

    If you Join please pm me,

  • Hi,

     

    At last I have found other people in the UK with ACC!  I am still getting the hang of how this group works, but would find it really helpful to correspond with others affected by this - so far have only found one other in the Uk!  I had a primary ACC tumour removed from the top of my lungs / bottom of the trachea in March of this year - apparently a rare tumour in a rare place.  I lost my left lung along with the tumour, but have recovered well.  I had planned to go back to work in a few months, but have just found a lump in my breast, so am holding my breath waiting for an appointment at the breast clinic to see what lies ahead.  I have found a YAHoo group that was helpful, but most members lived in the US or Canada where the heaalth system is just so different.  Would love to correspond with anyone out there affected.

    Jane

  • Hi Jane

    My husband was diagnoised with ACC of the Salivary Gland in April last year, unfortunately it had  already spread to his lungs & Liver by the time it was diagnosed.  You are the first person I have found with ACC except for a man who was diagnosed not long after Laurence was and we met his family and spoke with them but he himself didn't want to meet as he didn't want to know what would happen.

    You want to talk more just message me.

    Shelley

  • Hi

    I have acc of the submandibular gland and have had the gland removed , a neck dissection and radiotherapy.

    I have lung mets and today my consuktant has agreed I can have 6 monthly CT scans and referral to London for RFA treatmnet to mets if they are a suitable size.

    You seem to have done well following your surgery.   i hope your breast lump turned out Ok

    How old are you?  I am 58

    best wishes

    Ruth

  • There is plenty of information about acc and treatments on the accrf or accoi sites

    They are based in America   I live in Bristol in the UK and have not found others in the UK

    I am going to a european meeting in Germany on October 29th

    best wishesand how did it go with your brest lump?

    Ruth 

    acc submandibular gland in 2009 followed by neck dissection and 6 weeks radiotherapy i now have lung mets but feel very well and have 6 monthly CT scans

    which I had to persuade my consultant .  he agreed because I had information and research to back up my request

  • My husband had ACC in his sinus 3 yeas ago but its back now behind his eye, we have been referred to London because its not operable and the only option is cyber knife, consultant yesterday said that they have to weigh up the pros and cons of using this treatment because it could well harm the vision in his left eye, so bit of a rock and hard place really. Still we thought he had months and now it seems its years so I actually feel very positive today. Ok so I'd like longer but at least we get to enjoy some time together for a while longer :))

  • I have now been referred to London for RFA treatment for my lung mets

  • Hi,

    I have heard you can have radiation treatment for your kind of acc.  Try looking at the adenocystic carcinoma organisation international web site and in the yahoo support there is some info there.

    Ruth

  • I have acc lung mets and am going for RFA treatment in London on Tuesday.

     

    I enjoyed the acc european gathering October 29th this year.  There do not seem to be many acc patients in the UK

     

    Let me know the result of the lump in your breast

    Best wishes

    Ruth

     

    age 58  ACC submandibular gland in July 2009

  • Hi i am also in the uk...you are right there isnt many of us about!

  • I am in the UK. Was diagnosed on 20th June with ACC in left breast.  Have been told this is good news and that they don't think I will need any treatment but am being sent for a full scan as this is standard practice.  I am a bit confused by it all. Can anyone tell me where I can get further information/advice from?  Would be very grateful for any info at all.

    Thanks, Heather x

  • Hi,

     

    I suggest you look up acc on the accrf and accoi web sites as there is a lot of information and research out there though mist is in the USA.

    I have had to guide my doctors by informing them of the latest treatments .  I developed lung mets 2 years after diagnosis of acc submandibular gkland and have them ablated and destroyed by RFA treatment

     

    Best wishes

     

    Ruth

  • Hi heather..are you on facebook??

  • Sorry Deb I'm not on facebook.  I keep thinking about it but then decide against it.  I am trying to gather some information together aboutt ACC as I have an appointment with the oncologist on Thursday and from what people are telling me I need to make sure he/she is experienced with this cancer before I accept any treatment?

  • Hi,

     

    When you go to your oncologist you need to know if you have positive margin or clear margins.   it's important to have clear margins.  If there are positive margins you need to have radiotherapy.

     

    You should also have CT scans of your chest every 6 months - 1 tear to check for any spead

     

    Good luck

     

    Ruth