Acinic Cell Carcinoma

Hello Everyone
My name is Penny and I was diagnosed with Acinic Cell Carcinoma, a very rare form of Parotid Gland Cancer. Four years ago I had surgery to remove the tumor and so far I am cancer free. I do have concerns about recurrences of this type of cancer, and also problems I am having lately in the head, neck and face. My doctor did a cat scan in January but found nothing. Recently he sent me to an oral surgeon thinking it was a jaw problem. I have pain in the jaw, ear and back of head, all on the same side I had the cancer. If anyone has more info please let me know.
Thanks and good luck to all!
Penny

For Penny W:

I just posted a long message to you about this subject.

If you cannot find it, then email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

Edgar Stroke
Acinic Cell Carcinoma Information Center

Edgar
Couldn't seem to find the message. Please try it again as I am very interested in any info I can get.
Thanks
Penny

Hi Penny:

My name is alan, I'm 37 and was diagnosed with exactly what you have in Jan of 2005,... surgery,...radiation, etc.

Have you been having pains all along this 4 years or is it a new occurance?

I'm having similar pains, but they have been fairly consistent since surgery. I dont know whether these pains are from surger (parastesia) or radiation damage?

I have come across some research that indicates "pain" is a fairly common factor of recurrences. I noticed Edgar Stokes has replied to you. I am a member of the acc support groups run by him. He is very knowledgeable.

If your pains are new let me know and I will go back and dig the research I'm talking about.

good luck

Alan

Hi Penny,

My name is Mari and I was diagnosed with the same parotid gland cancer, Acinic Cell Carcinoma last year. It was excised on OCT 03, 2005. I also have the same concerns like yours. I do experience flanking/shooting pains on my jaw, neck, ear, behind the ear and at the back of the head, the same side where the cancer was. I was given 600mg of gabapentin 3 times a dy for the pain. The doctor said the pain is coming from the nerves. The medication helped a bit. It reduced the recurrence of the pain.

Mari

Hello Edgar;

 I visited your very thorough web site many times during the course of my husband's treatment.  He was one of the very rare ACC pts whose cancer was not slow growing and low grade.  He died in Nov 06 only 7 mths following diagnosis.   I always noticed the web site had not been updated since 2005 so I was glad to see here that you were well in 06.

Sincerely;

 Caroline

On 3/23/2007 Caroline Kyle wrote:

Hello Edgar;

 I visited your very thorough web site many times during the course of my husband's treatment.  He was one of the very rare ACC pts whose cancer was not slow growing and low grade.  He died in Nov 06 only 7 mths following diagnosis.   I always noticed the web site had not been updated since 2005 so I was glad to see here that you were well in 06.

Sincerely;

 Caroline

Hi Caroline, My sister had an ACC tumor removed 4 years ago and she now has Stage IV cancer that has spread to both lungs and is inoperable. But she is doing some chemo. Would it be oo painful for you to share some of your experience with your husband, how the disease progresse,d, what treatments you tried, etc.? Thank you and I'm so srry for your loss. We fear we will lose my sister, too, but are praying for a miracle. She's only 46. Sharon