Family fights rare form of cancer: http://www.dailysouthtown.com/news/547120,cancer-907.article
I found 17 in Nebraska with my kind of cancer, which can have a primary location of any secretory areas on the body. The national cancer statistics don't list where the cancer starts, so I don't know if anyone in Nebraska with ACC is 'cheeky' like me or not.
The family started an organization to raise funds to help further research on this cancer:
Attack ACC http://www.attackacc.org/. The funds raised will be sent to the University of Virginia http://www.healthsystem.virginia.edu/internet/cancer/teampages/moskaluk/ACCdonate.cfm. The University also maintains an ACC tumor registry http://www.healthsystem.virginia.edu/internet/cancer/teampages/moskaluk/ACCregistry.cfm, but I haven't quite figured out how the process works to send my tissue samples (for example, are they still around in the hospital somewhere??).
The Attack ACC site has a good description of the progress of ACC on this page http://www.attackacc.org/page7.html. Knowing that this might be my progress (but also knowing everyone is different) is what keeps me focused on getting things done in the next 5 years or so, but the sooner the better.
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