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my cancer Adenoid Cystic Carcinoma

my cancer Adenoid Cystic Carcinoma

Posted by Syl on Jan 29, 2019 7:31 pm

Anybody else knows about this type of breast cancer ? 
Sylvie Michaud

Re: my cancer Adenoid Cystic Carcinoma

Posted by ACH2015 on Jan 30, 2019 8:47 am

Hi Syl‍ 

You and I have very different cancers, yet the common factor is how rare our cancers are. Welcome to the rare cancer club.

I looked in the community and the only other person with a similar cancer type ( Adenoid cystic carcinoma) is Beth48‍. That is where everything changes as Beth's cancer was not in the breast, but in her parotid glands. These glands are present on either side of the mouth and in front of both ears. They are the largest of the salivary glands.

Below is a quote from a reliable website that describes your cancer type:

"Adenoid cystic carcinoma (ACC) is an uncommon tumor of the breast, accounting for approximately 0.1% to 1% of all breast cancers. It is characterized by rare lymph node involvement and distant metastasis, and associated with a favorable prognosis with excellent survival, despite its triple-negative status."

Here is the complete link if you want further information.


I have read some of your other posts including the one about your surgery tomorrow, and I wish you well.

Being in a grouping of rare cancers is just another part of the cancer experience we need to understand and come to terms with in our own way. 

The good news is that rare cancers have treatment plans just like the common ones. I have come across only 2 others in 2.5 years that have the same cancer (metastatic adenocarcinoma of unknown primary) as me. Both situations in our meeting were purely coincidental.

Keep well and I wish all the best to you.

ACH2015 - Andy.