Chondrosarcoma – ah shit, bob's sick

Back in Vermont and generally feeling pretty good. I signed up for a seminar at MGH on the History Of Proton Therapy, and then got invited to a doctors level seminar on the Future Of Proton Therapy. I’m very excited about attending these seminars and hope to gather some new information about the treatments I’m receiving and proton in general. Both are being held this coming week, and I’m sure I’ll be making posts about them.

I am now beginning to see a few familiar faces around the center … which is nice. I’ve spoken with a few of them and am hoping to build relationships that go beyond the Proton Center, and continue on, after treatments are completed.

In another post made earlier this week entitled “It Came From Outer Space”, my friend Howard C. came up with an idea that I found extremely interesting. I was writing about where these rare cancers come from, and the hundreds or even thousands, of possibilities and Howard suggested building a large expandable, online questionnaire about this.

The general idea could be to have people voluntarily sign up, answer the questions, and then a backend computer program would mine the data looking for similarities in cases. But, there would have to more to it then just that. It would have to be able to add questions at anytime, and the system would email those that already took the survey and ask them to return and fill out the new questions … and build an ongoing base of information, to see if there are commonalties in some of the information. Yes of course, this could become a complex program quickly.

Now, there would have to be a lot more to this then I’m speaking about here … but that’s the general idea. I’m truly considering doing this. Howard’s correct when he says that no one ever seems to ask these questions in any depth, and I have found that to be true in my experience. With all the hospitals and doctors I’ve dealt with, not one has ever asked me to fill out any sort of “where did this possibly come from” form or survey. Isn’t anyone, or any agency looking at this? I know that most states asks that cancer cases to be registered, although it’s not required, but they use that for simple cluster searches, and very basic statistics … not for research purposes. They only ask about six questions … I’m talking about possibly hundreds and maybe even thousands of questions over a long period of time.

You join this ongoing survey (become a member like in a forum), and continue adding your health information over your lifetime, and adding/asking new questions. You add a little information once a month, or every six months … whatever.

Most people that have a cancer, I would think, have a lot of questions that never got answered, or asked, for that matter, during their initial experience. When your diagnosed with cancer, it tends to take over your life … and you do want ask questions. I have, and if their experience is anything like mine has been, and I’m not saying my experience is poor or bad by any means, there are going to be even more unanswered questions when I’m finished.

Can you imagine?, something interesting from global community could be discovered!

Wow … it could even create some good new jobs!