Your Best Friend and Worst Enemy

The Internet.

Admit it – it’s the first place we go when we have a question.  Enter a few words into a search engine and, voilà, pages of answers automatically fill the computer screen before us.  But there is a fine line between becoming informed and finding out too much.

If you’ve searched the Internet for “soft tissue sarcoma” (and I know you have because you’re here!), what you found was probably not the most uplifting reading.  But, because of the rare and special nature of this disease, it is vital to be educated, especially in the beginning when approaching it the right way can make such a big difference.  At some point, however, you need to stop reading because we are people, not statistics, and our stories are individual, not necessarily reflective of a scientific study.

I’ve told many people that my inquisitive nature on the Internet saved my life.  When I first started to question the puffiness in my leg, I Googled something like “swelling on thigh” and immediately learned about a serious, rare cancer called soft tissue sarcoma.  Armed with the information, I saw my primary physician who didn’t think the swelling was anything to worry about it.  I was persistent and she finally agreed to an MRI.  Had I not read about soft tissue sarcoma, there’s a very good chance I still wouldn’t know I had it (my mass was buried deep in my thigh).  The Internet information also played an important role in the biopsy.  When the MRI showed a suspicious mass, I was offered the opportunity to have an immediate biopsy by a general surgeon, but I had read how important it was to have a sarcoma specialist conduct it, so I waited.  The importance of the proper biopsy procedure was reinforced many times by the specialists at Roswell Park Cancer Institute.

The helpfulness of all the information that had flooded my computer stopped there.  Reading information on staging and survival rates was like watching a train wreck – I couldn’t stop looking, and now, unfortunately, those facts are seared onto my brain.  Most of the time, I can push them back to a tiny spot way in the back of my head and forget about them.  I have found, however, that when they surface, that’s when I have my down days.  Chances are that you, too, have already read too much.  If this is the case, let’s encourage each other to remember that those Web pages, while helpful, don’t necessarily tell OUR story.

Share the strength.

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