Patient Advocacy Project

[AlaskaAngel]

Becky,

Even those with solid educations in medical matters struggle with this when they personally are diagnosed. And who hasn't discovered along the way that their very conscientious and caring health care providers don't know as much as we thought they would, or even as much as we end up knowing?

Those who at diagnosis have immediate access to major cancer treatment centers often might be able to see DVDs and visit a library for patients with lots of books and DVDs and pamphlets and computers with people to help patients look up information.

But out here... At the very best, there may be occasional pamphlets at the hospital or doctor's offices, and a couple of old editions of things like Dr. Susan Love's books.

So I was pretty happy when the Mayo Clinic came out with the Mayo Clinic Guide to Women's Cancers. It lets the reader explore any aspect of a lot of what we struggle to figure out when we are diagnosed, or even down the road. It isn't a perfect answer. The newest info isn't in it, even though it is not very old. But I would recommend it even just to get familiar with the vocabulary and concepts. I bought a copy and it is kept at my PCP's office in the room they use for chemo patients, so that it is available to them.

I'm not sure how we can find a way to keep something that has to be really current going, that would especially help those who already have learned the basics and are trying to handle questions like the one about your situation. What you are talking about is something almost like Wikipedia, constantly being updated. Am I on the right track with what you are thinking here?

AlaskaAngel