Doctors are humans, right?

Doctors are humans and humans make mistakes, right? But how much /in what extend can you accept it that mistakes are made when it concerns a case of life and death?

The first mistake made is that there was a lack of aftercare after removal of the tumor in my breast. Local hospitals shouldn't treat rare cancer diseases, even if there is consultation with a specialized hospital.

And even in the specialized hospital I have to be alert. The difficulty when having a disease that is so rare, is that doctors are in as much uncertainty as you are. Which makes everything more complicated and that is understandable. What I don't understand is the unwillingness to think out of the box and to be open for suggestions. And the "I know it all" attitude based on experiences with other diseases. I think my sister (my BFF head of research), spoke with more Phyllodes patients over the last 3 months than any oncologist in the world. Because, in their entire career, they don't see so much Phyllodes patients stepping in their office.

So we gather that information world wide, but we don't have a medical background so we're depending on the collaboration with my oncologist. My oncologist is intelligent and has a lot of experience with cancer, but it's the conservative patient-doctor relationship. The 'they tell, you do' kind of relationship. I'm looking more for a collaboration but I don't want to be framed as the troublemaker with all those questions/info with the risk of turning back on me.

So why not finding another oncologist? Well she is intelligent and working in one of the best hospital, so my gateway to a lot of treatments. Maybe I'm still able to change things, so not giving up (not yet) :-)