Anybody out there had Acinic Cell Carcinoma of the Parotid Glan

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Anybody out there had Acinic Cell Carcinoma of the Parotid Glan

I was diagnosed four years ago, two surgeries and six weeks of radiotherapy. I lost all the nerves in the right side of my face. Been doing well but fear it could come back. Would like to hear from others who have had this

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Cancer Council Team

Re: Anybody out there had Acinic Cell Carcinoma of the Parotid Glan

Hi @AliJ, so sorry to read of your experiences, that does sound like a rare side effect. Have you discussed it with your health care team?

 

If you would like to chat to someone about it, please call 13 11 20 and speak to one of our health professionals. I do hope you are well!!

 

Kind Regards,

Kate

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Re: Anybody out there had Acinic Cell Carcinoma of the Parotid Glan

My 15 year old daughter has been diagnosed with Acinic cell carcinoma in the parotid gland 

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Re: Anybody out there had Acinic Cell Carcinoma of the Parotid Glan

Hi Cassandra, I can only tell you what happened to me and how I delt with it. I was diagnosed with cancer of the parotid gland in 2013. At first they believed it to be a secondary tumour but a PET scan showed it only in the gland and three  lymph nodes. As the tumour was interfering with the facial nerves, when it was fully removed the whole of the side of my face was left with paralysis. They could not do a nerve graft, but they did do a nerve splice to help with movement. I was able to close my eye so they did not need to put in a weight. It looked like I had had a stroke.....BUT..... there is a way forward from this. Just like with a stroke you can do rehab. I have been able to regain full use of my mouth, my speech is almost normal (but hey, what is normal I should have said back to what is was) my face is not as droopy as it was. I have used massage from a physio specialising in post cancer treatment. The radiotherapy left the skin thick and the muscles tight, I have almost full mobility in my neck now and the exercises she gave me to help move my mouth and make expressions really worked. Up until then moving the right side of my face didn’t always turn out the way I thought it did, kind of like trying to stand when your leg has gone to sleep. The best advice I got. Don’t settle for what one person tells you, ask questions until you get an answer you can work with. Use alternative therapy’s, my doctors said they would do little to improve my outcome but I sailed through radiotherapy by taking supliments and eating right, it also gave my body the extra stuff it needed to heal and made me feel like I was doing something to fight for my health. Don’t be ashamed of feeling vain, it’s her face, it’s the first thing people see and she is fifteen. Let her feel and grieve, but know it will get better. She is young and treatment will work so much better. I am more than happy to private message you and tell you what I did

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