Acinic Cell Carcinoma

Hi there, I recently had surgery to remove a benign lump from my left parotid gland which i think had been there for about 12-15 years, when this was sent to the pathology department this turned out to have cells of Acinic Cell Carcinoma, the pathologists report staged this as a PT1.  I am 30 years old, and I can't help think my life is over and that I am now dying.  My cancer doctor didn't reccommend radiotherapy and said he leans more towards just monitoring.  I am so scared.  Can anyone help me?

  • Hello Tracey89, 

    Welcome to our forum. I am sorry to hear that you have had your pathology results and that these to showed to be acinic cell carcinoma. We have a little bit of information on our website on acinic cell carcinoma here which I hope will give you a little reassurance. If you wanted to talk this through with one of our nurses, they will be able to tell you more about it. You can call them on 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    If you have any worries at all about what the report means, don't hesitate to share your fears with your doctor I am sure they will be able to reassure you and tell you more about it.  I hope you will also meet others here who have been diagnosed with acinic cell carcinoma and that they will be along soon to share their experience with you.

    Best wishes, 

    Lucie, Cancer Chat Moderator 

  • Hi, 

    I was diagnosed with stage 2 acinic cell carcinoma at the age of 19 and felt exactly the same as you. I had only surgical treatment and am now 15 years clear with no issues - just a bit of a battle scar! I hope you have a similar positive journey. Definitely ask your doctor any questions you have.

    Happy to chat more if it would help xx


  • Hi there,

    Thank you so much for your reply. I'm so glad to hear someone else had it and went through the same. Every time I google it says it has a high recurring rate. I am so scared. I am so also scared as my margins were relatively close so I have convinced myself my life is over. I am just being monitored every 3 months now for the next 5 years. Did you get any scans? Thanks. X

  • Google can be scary (I did the same!), but just remember the differences in stages probably has an impact on this. I'm sure your doctor has recommended monitoring as this is best for your type - but definitely ask him more about this, and reoccurance rates etc if it is a worry for you. In my experience they were so helpful with any questions.

    I had a few operations (the first where they discovered the cancer, then for parotidectomy and lymph node removal). As lymph nodes were clear, I just had regular checks as you've been recommended. At the beginning this also involved scans (mri i think and chest xrays), as well as a thorough examination of my neck. They moved from fairly frequently to annually, and I had my last one 10 years post surgery. I used to do my own regular checks on my neck with my fingers and went to the doctors with any worries. Again my anxiety would rise a little in the lead up to any checks so it's important to get support at these times and have someone to talk through things with. 

    How you are feeling is completely normal - just that one word can turn your life upside down. I hope my story can provide some hope in it all and that reassurance from the doctor can also help - make an appointment now and write down all your questions. There are also support groups out there or people to talk to on the phone through charities if it starts to feel overwhelming. Sending lots of love and luck to you.

    Again, happy to keep talking as and when you need it. 

    Helen x

  • Hi Helen,

    I had a partial tail parotidectomy which was to remove which was believed to be a benign lump but the surgeon took a margin and took 2 close lymph nodes also when I had the surgery and the lymph nodes were clear also. I had a CT scan with contrast from my chest above and this was all clear too. I then had a ultrasound of my whole neck and this was also clear. I guess in my head I keep telling myself it's spread.  Not sure how when everything is clear. I know stage 1 is very early stage and hopefully it's gone now. I am only being monitored for 5 years. I feel my neck all the time and get so paranoid when anything is wrong with me. So freaked out it's an understatement. How clear were your margins? I have my next follow up appointment on 17th December so I have written some questions down to ask. I appreciate you taking the time to share your experience with me. Thanks Tracey xx

  • Hi Helen,  I havejust been diagnosed with acinic cell carcinoma and I am terrified.  I have to have the tumor, gland and some nodes removed.  Worried what my face is going to look like.