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Sunday, August 26, 2007

Adenoid Cystic Carcinoma - What to do after the first treatment and recovery

Lilly posted a comment on my One Year blog post, but I will answer her here. If you are one year, two years, ten years out from the initial diagnosis and treatment of Adenoid Cystic Carcinoma, congratulate yourself that you are where you are. Hopefully, you are still being monitored periodically by your initial cancer treatment team, or your crack family physician is prescribing yearly checkups/scans to make sure that the ACC hasn't grown in the same or other places. (If not, you better find a team to be on your side quick.)
If, like Lilly, you are experiencing pain or other symptoms, go find a clinic/teaching hospital/some health facility that will look you over and check for recurrent cancer. Don't just sit - that won't ease your mind or help you in the long run. Don't depend on a blog like this to get you to the diagnosis level of your symptoms - blogs are just information (hopefully supportive), not hands-on health care, and you need to find the human experts that can diagnose. Get off the computer and get yourself to a clinic! The visit can change your life!
If all is going well, and you want to keep up with news about treatments, support offered, or offer support for the newly diagnosed, join any of the online support sites I have listed in and next to this blog. If you want to find an in-person group nearby, ask your local library if they can search a list of support groups, or ask your care team about groups that they know about (the SPOHNC link is also a good source, if your ACC was in your head/neck). You may need to do some initial footwork, but in the end you should find a group that will give support back to you. And there isn't a time limit on seeking support for dealing with cancer and its lifetime effects - we are lifetime members once we get that diagnosis.

Other sources:
-Here is a clinical trial search for ACC - clicking on it should get you to any trials currently open for treatments surrounding this type of cancer (there aren't usually many).

-In today's Parade Magazine, there is an article on cancer patients needing rehabilitation (instead of just chemo and radiation, and back to work we go). They give a list of links for more information on this page:

And I quote the list of links here, since I don't know how long that link will be working:
"For a list of doctors in your area who specialize in cancer rehabilitation
, email the American Academy of Physical Medicine & Rehabilitation (AAPMR) at
Informative websites:

American Cancer Society (ACS)

National Cancer Institute (NCI)

Vital Options International
1-818-508-5657 "
Thank you, Parade Magazine!

Finally, pay attention to yourself and your gut. I bet your original diagnosis didn't come easy - this is a sneaky kind of cancer, and doctors, figuring the hoof beats they hear are horses, not zebras, often jerk us along through testing or fiddling with other possibilities before coming to recognize it for the zebra it was all along. When/if the ACC comes back, it can still be missed - just stay strong and keep reminding everyone on your care team that you have ACC in your history, and you want to rule it out before they start listening for horses again.

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