[Jackie07]

Doctors have their egos.

My breast surgeon's (surgical oncologist) first reaction to my recurrence was "You are my first patient that have recurred!" [So it was 'my' fault? ] The medical oncologist continues to act as if I'm hypochondriac - trying to assure me that I'm 'cured' [and I should fall into the 'trap' the second time? ]

My family doctor had no clue about my 'family' history - can't blame him, all of my family members live overseas except the ones by marriage... But shouldn't he have at least brought it up? Oh, no, he couldn't. He didn't know that I'd had a long brain surgery 20 years ago and a GKRS for recurrence 2 years before I became his patient - do they really read the long medical history questionnaire I fill out each time?]

Since they won't take any active role in my health care (none of my cancer diagnosis was found by their 'clinical exams', lab work, or mammograms [they had seen things, but dismissed it as 'scar tissue' and told me everything looked 'fine'.]), I had to take initiative to undergo prophylactic procedure (the genetic counselor at the hospital did/said nothing about my test result except charting my family history - I could have done that myself!)

Thanks to this wonderful site and caring members (Marcia helped me getting my genetic result 'corrected' by a genetic expert - I had mistaken the upper case of 'i' for the lower case of 'L') I was able to find some research articles regarding my genome and my risk (possible HNPCC based on family history - figured that one out after my 2nd Brother had undergone colon cancer surgery and chemotherapy) Ever since my prophylactic hysterectomy/oophorectomy, I've not had dry lips (caused by 'low grade fever' - a sign of inflammation somewhere. My doctor could never have detected it because the cold water from the water fountain by his office always gave me a very low temperature reading - and he never questioned why my temperature had always been way low...[I drank the water because I was thirsty...because of the temperature that had resulted in very dry and chapped lips - but he just thought I was agitated and short of sleep (which was actually caused by the growing tumors inside of my brain])

Yes, we have to be our own adavocate. Check out the links Debbie provided and seek out the clinical trials that you qualify. It is true that what you've had so far is like on the control arm (traditional chemo+Herceptin treatment) of a clinical trial. But he shouldn't have discouraged you from seeking further information/treatment.