[alicem]

Can someone help me understand the difference between standard protocol and FDA approval? Without knowing any better, it seems to me that oncologists go by what the FDA approves in order to set up the standard protocol of care.

In doing research I see that the FDA approved the use of Herceptin for Early Stage Breast Cancer (EBC), Her2+++, Node Pos. in November 2006. The FDA approved the use of Herceptin for EBC, Her2+++, Node Neg. in January of 2008. So the standard protocol of care that Liz is referring to did not actual come about until January 2008?

It looks like Susan became a member in March 2006, and the standard protocol of care at that given point in time, not now, was to give chemo and Herceptin ONLY to women with advanced stage breast cancer. If that information is correct, her oncologist, in March 2006 gave her the appropriate advice for the existing protocol at that time. However, the protocol has now changed. Do we know if Susan were newly diagnosed today if her oncologist would give her the same advice now that he gave her in March 2006? Perhaps not since the protocol seems to have changed between now and then.

My only point is that we are not doctors, we do not know the size of her tumor. What does it hurt for her to go in and get a second opinion from a second oncologist, and then get a third opinion from a third oncologist. When I was first diagnosed with DCIS, I went to 2 different oncologists just to seek their advice as to whether I should proceed with a lumpectomy or with a mastectomy as my next choice. They both told me they saw no reason why I should opt for a mastectomy. I chose the lumpectomy, only to need a mastectomy anyway. Thank God I had the mastectomy because that is the only time that any invasive cancer was found, it never showed up on any biopsy, or mammogram or MRI. Would I have done anything different, no. I felt I had peace of mind because I had asked for more than one opinion. The nature of my cancer dictated my care. I shudder to think if my surgeon would have gotten all clean margins on my lumpectomy - the cancer would not have been found.