University & Medical Libraries
I spent several hours doing updated research on adenoid cystic carcinoma - breast and head & neck, cancers of the appendix, carcinoid, phyllodes, pseudomyxoma peritonei (pmp), and several other rare cancers. On some, there was not much new since my last update. But, others had some very interesting journal articles.
If you new (or relatively new) to the rare or pediatric cancer world, you are probably wondering where I got all these great articles. So, I will share what I learned early in my own cancer journey.
When I was dx’d in 1998, I had a very rough time finding information. The internet was not as easy to navigate and the rare cancer info on it was sorely lacking. I knew I needed to do my own research because my oncologist honestly told me that. I asked around until I found out that tucked away in my local hospital, in a coat closet (it sure felt like one), under a stairway (literally) was a treasure trove of information. It was called the medical library and it was there to service the doctors on staff. And in that library was a virtual life raft for me - Laura, the medical librarian!
This lady was drop dead gorgeous, so the last thing I expected was someone so helpful and intelligent (me and my stupid assumptions!). She not only helped me find articles, she printed them for me, even spent her free time researching for me. She was very computer literate and medically literate and she taught me a great deal about finding treasure troves of info on the WWW. And I shut my mouth and listened and learned.
That was several years back and I have migrated around the country. I am sure Laura has moved on (at least I hope someone offered her something better than a stairwell!). The most important lesson she taught me was that most hospitals, teaching hospitals, or universities with medical education programs, have a medical library.
Today, I spent my research hours at the University of Arizona Health Sciences library. It is a 45 minute drive from my house, but well worth the trip and gas money. I always find a great deal of precious information there. I downloaded 4MB of journal articles today that I will read in my spare time (WHAT spare time??).
In any event, if you want information on your cancer, search the stairwells of your local hospital. Find your medical or university library and start using their resources. For me, I just want to give two thumbs up to the librarians of the world. One of you not only helped me save my own life, but gave me the knowledge to help others save theirs!