Tuesday, 6 September 2016

What is Adenoid Cystic Cacinoma (ACC)?

Have you heard of it? I hadn't. John hadn't either. In fact I think only one person who heard the news had heard of it. So here's some basic information in case you're wondering.

Contrary to its name it does not involve the adenoids. It occurs mainly in the salivary glands, the major one being the parotid gland. The tumour I have is in my left parotid gland. 

"Due to its slow growth, ACC has a relatively indolent but relentless course. Unlike most carcinomas, most patients with ACC survive for 5 years, only to have tumors recur and progress. (See: http://www.oralcancerfoundation.org/facts/rare/ac/)

Currently the best treatment is surgical resection (removal) and postoperative radiotherapy. 

It is rare. 2 or 3 in a million. There have only been 60 cases in Australia since 1950. 

The good news is that it is generally a slow growing cancer. 

The bad news is that it has high propensity to recur locally and in other parts of the body and for distant metastasis. This can occur decades after initial diagnosis. If there is metastasis there is no treatment. Because of this the literature gives an 8 to 15 year survival rate! This is information that I cannot entertain right now. John and I have been making some life decisions and changing plans because of this but I am determined to live a long and happy life with John and my girls! More on this later too.

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