jmlucas

Okay, I'm a little bent out of shape by Musa Mayer's comments, especially considering she was dx'd Stage II in 1989 & from my understanding, has never experienced a recurrance, local or distal. So, how does she become an authority on what it is like to live WITH Advanced BC and survivING WITH Stage IV disease?
I found the following comments particularly interesting:

"… early detection of metastatic disease through testing before you have symptoms doesn't offer an advantage for you. This means that you don't have to drive yourself crazy with repeated tests every time you see your oncologist. It means that your body will let you know if there is a problem..."

I think Ms.Musa has missed the boat with comments like these. SurvivING w/this disease isn't about NOT DYING.In my opinion, it's about THRIVING and maintaining the highest Quality of Life in the face of it! Why wait until the bone mets are causing you pain or the liver mets are making you feel crappy or the brain mets are causing neurological problems, if we can take steps to treat while the tumor load is still small & prevent symptoms? Yes, we know we can't be "CURED", but I will gladly live 110 years with this disease, so long as we keep in under control!

I'm also VERY VERY VERY curious about everyone's thoughts about the following comments. When NED, I get scanned ever 2-4mos for "re-staging", to make sure nothing new has popped up or that NED is still around.

"There is very good research that shows that patients who have follow-up testing done, by which I mean bone scans, CT scans, MRI's, tumor markers, etc., in the ABSENCE of symptoms do not do any better or live longer than patients who do not have any of these follow-up tests done.
So what I am saying is that in terms of making sure you don't have a recurrence, it is not dangerous or harmful to wait until you have a symptom. You don't need to be tested periodically to make sure that you are cancer free.
Catching a metastatic recurrence before you have symptoms, versus catching it a month or two or three months later when it's causing symptoms, makes no difference in the course of the disease or in survival. When I found this out and read the research that demonstrated this shocking fact, I was stunned.”

I know some folks have posted that their docs have suggested No Scans Until Smptoms, but I thought that was primarly for early stage.
So, Fellow Stage IV'ers, what are your thoughts?
Keeping the Faith!
Jessica