Newly diagnosed with adenoid cystic carcinoma?

If you or someone you know has recently been diagnosed with adenoid cystic carcinoma, you are probably searching for information on this type of cancer, and what treatments may be available for the individual's diagnosis. Please don't feel like you have to locate the information by yourself - there are legions of information professionals ready to take on that mission for you. Call a librarian! Contact your local public library for help - searching for information at times of stress may not lead to the best sources that exist. (I am a librarian, and I didn't search out my own information - I asked the librarians at Nebraska's Consumer Health Information Resource Service for help http://www.unmc.edu/library/consumer/ ). You can find a local library in Canada, United States, or other countries - either public or medical - that serves consumers searching for health information by looking at MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html .

You could also look in MedlinePlus for local sources of help and information, by using the Go Local feature. For example: look at the Go Local box on the right side of the Cancer topic page in MedlinePlus http://www.nlm.nih.gov/medlineplus/cancer.html . Click on the drop-down menu, and select your state or area (not all states are in the database yet, but folks are working on it!). I select Nebraska. A page comes up, showing the state with county boundaries - I select Douglas, and can see a list of resources (including health professionals, facilities, and support groups) in Douglas County, regional services also serving Douglas County, and resources serving all of Nebraska.

Sidebar links for those that can't see the sidebar

For those that can't see the right-hand sidebar that includes links of potential interest to anyone with head/neck/oral cancer, here are the links I have collected so far:

Nebraska's Free Consumer Health Information Resource Service [CHIRS]

Locate a consumer health library anywhere in the US, Canada, and other countries

My Cancer by Leroy Sievers at NPR

Cancer section at MedlinePlus

Support for People with Oral and Head and Neck Cancer [SPOHNC]

Adenoid Cystic Carcinoma Organization International

Rare Cancer Alliance

Oral Cancer Foundation

The Assertive Cancer Patient

Sharingourdays-community for those with ongoing health conditions

New Year update

Things are going well, with the radiation side effects having little impact on my daily life. I can now touch anywhere on my scalp without pain; I have regained more feeling in the left side of my jaw and neck (they no longer feel like they are 'asleep' and tingly when touched); my left ear has decided that it will behave itself and remain part of the whole ensemble; and my hearing has cleared up -no longer hearing things like I am underwater on that side of my head. There is a bit of tinnitus, but since I live with many electronic devices that buzz, click, and whir, the extra noise in my head doesn't bother me nor is too noticeable except when I am in a quiet area. The remaining big difference is the lack of sense of taste. Smell, sight, and hearing have stepped in to take up the slack. Also, I am crocheting afghans like crazy to keep my mind off of missing food tastes (anyone want a blanket?). Saliva levels come and go like some weird tide - some days I don't notice much of a lack, other days my mouth is like it was in the early days after radiation: a Sahara. All in all, my energy levels are better than before my operation (which says a lot for my ability to work under extreme conditions!), and I look forward to a bustling spring and summer, the first ones in 3 years without pain in my head.