Postby concernedrelative » Sun May 05, 2013 11:38 am
The trip to MDA was deeply disappointing. While we are under no allusions and never have been, the Onc there in Nov. led us to believe there were more treatments available as she didn’t want to talk about any of the drugs I asked about. She said “we have time to explore choices later.” She also pointed to our need to keep the faith as she has “patients with stage IV alive 5-8 years since diagnosis” even though she knew we were in the midst of 2nd line therapy. We were told, “we are happy to act as consultants and feel free to come down any time when you feel it is appropriate.”
We always come prepared, on time, with a list of questions so everyone’s time is maximized. On this trip; after explaining our current predicament prior to travel with a short list of things we hoped they would address but only if they could, she said “none” of the established regimens would likely work for us and clinical trials were all we had. The clinical trial won’t likely work either. Five minutes into the meeting, she was visibly agitated as if we were taking up too much of her time! When I asked about the positive stories she told us in the early Winter, she said “those were strictly anecdotal patient
stories”. Asking about our genetic screening done in the Fall, the answer was “only generalized mutation, none specific” leaving no further direction for the conversation. When asked about how quickly Folfiri & Avastin resistance were hit (10 months), she said “that was lucky, usually only get 4-5 months out of it” which would have been before the time we all agreed to a 2nd consulation (sometime this Spring).
Honest to g-d I was so flummoxed, I couldn’t believe what I was hearing. I’ve been in years of business meetings, some very contentious and never seen such a violent about face in attitude. As if we were just some tremendous burden on an overscheduled calendar. I was quite clear in what we were looking for and following up with them as they had eagerly recommended 8 months prior.
We’ve tried to stay open minded, focused on our predicament and realistic but this was just rude, curt behavior we didn’t need at this juncture. Truly a Dr. Jekyll and Mr. Hyde situation. My relative, who is knowledgeable about medical matters was so upset after the visit she went back to the Doc and gave her a piece of her mind. I reject completely anyone’s suggestion that we just weren’t prepared for bad news. This was an experienced clinician treating a patient worse than shabbily.
Feel free to PM me should you wish the name of the doctor if at a minimum you want to steel yourself to a similar consulation. I’m offering this up as a frank and open experience of one patient family with one leading clinician in the community. I welcome comments, etc but am done trying to rationalize someone else’s poor behavior. Moving on to our new plan.
Crgvr to 37 y.o. DW
3/11 Dx IV w mets lungs, xeloxi/avastin
8/12 switch irino/avastin
4/13 2nd line failed
6/13 imprime pgg trial failed
7/13 stivarga started/failed
9/13 folfiri+erb
Lost her valiant and noble fight 022114