Rare Pediatric Cancer Support
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Rare Cancer Research

I have found that medical professionals are much more apt to do research for 'common' cancers.  Remember these professionals are dealing with the everyday rigors of treating cancer patients.  They seldom have time to sit in a medical library and search for new data.  Most receive medical journal publications, but not all cancer research information will be available through this medium; and not all professionals have the time to thoroughly read each journal they receive.  That leaves the task of researching your rare cancer up to you.  Actually, in order to get the most up-to-date information, I would strongly suggest this under any circumstance.  So how do you do that?

First things first, make sure that you are spelling your search term correctly.  We strongly advise that you look up your cancer name/terminology in our Cancer Dictionary. You may search by first letter, or any combination of letters; as well as complete words.  Use this dictionary to look up other medical terms and check your spelling.  This is a great resource for further information.  Try variations.  For example, my cancer is Adenoid Cystic Carcinoma.  I first search for that exact term.  In most search engines this can be accomplished by putting quotes around the term (i.e. "adenoid cystic carcinoma").  Then I would search under "adenoid cystic".  I would also search on some of the older naming conventions for my cancer, such as cylindroma and cribriform.

When I started out in my cancer research journey, I first went to the medical librarian at my local hospital.  Many health care institutions have a small to large size medical library.  I explained to her that I had just been diagnosed with a very rare cancer and she immediately became one of my most helpful advocates.  She taught me the ins and outs of medical library research and online searching.  I also went to my local library and found another wonderful resource.  Here in the U.S. you can order books and publications from around the country through your local library.  There is usually a waiting period, but for some books it is well worth the wait.  Since my rare cancer diagnosis, I have come to realize that librarians are one of the unsung heroes here in the U.S..

You can also do a great deal of research online.  Hopefully this website, the Cancer List links, and the Journal and Cancer Search Engine links in this module will help with this endeavor.  Going to the Forum link will give you another venue for info and support.  Postings there  may be able to save you time.  If there are website links for your particular cancer on the List pages, you may find some answers to your questions by visiting them or emailing the contact support person.  You can also use one of the many cancer websites that allow you to search for information about your cancer.