Tuesday, April 22, 2008

Disappointed and Somewhat Ticked Off

I am disappointed in and somewhat ticked off at my oncologist. I am going to have to become less trusting (what in the hell was I thinking, to go trusting a doctor, anyhow) and even more clearly assertive. Or something.

I may not be able to recount all the details correctly, but I guess it all started when the doctor asked me if my tumor tissue had been tested for EGFR at MD Anderson. I was pretty sure it had not been, since it was like pulling teeth to get Johns Hopkins Hospital (JHH) to send slides and I was pretty sure slides would not be sufficient to do any testing. I never checked, however, and the doctor did not ask me about it again. I kinda forgot about that exchange. Turns out that she asked this because there is a drug (Tarceva) that can be very helpful for treating cancer which has the EGFR mutation (and there is some indication that it might be good even for treating cancer which does not have that mutation). The side effects include rashes, diarrhea, and fatigue. (Which sounds waaaaaaay better than chemo!). The doctor mentioned that there was a clinical trial on Tarceva at MD Anderson.

After researching Tarceva, finding out that my tumor tissue was never tested, writing a letter to the doctor (at her request) to request the test, and being told that I'd have to wait "weeks" for the result, I also did some looking around and found the Tarceva trial at MDA. I read it thoroughly and it looked like I met all the requirements and did not meet any of the disqualifiers. Yesterday I called them to find out if I could join the trial and was told that the trial had met its enrollment requirement and was closed last week; they just hadn't taken it off the web site yet. However, the nurse there also mentioned that Tarceva was now "standard of care" and I could get it from my doctor.

I emailed my doctor to ask about getting Tarceva and her response was "I didn't talk with you about it at our last conversation because you were against doing systemic treatment." My reaction was one of shock and surprise! I never, ever told her that I was against systemic treatment! I may have said something like "Gosh, I never want to do chemo again, haha," but I certainly never said that I would rather have surgery than take a pill with minimal side effects! Why on earth did she interpret my words like that?!

Oh well, it will not really help to be angry. So now I am going to send her an email that clearly and officially states that I want to hear about all treatment options. In the future I will make sure to say that at every visit. And I guess I am going to have to step up my research into treatment options so that I can ask good questions and get as much information out of her as possible. Always a good policy, of course. I just got so scared and overwhelmed that I forgot to subscribe to my usual policy of doctors-know-nothing-so-I-must-research-everything for a while...

Sigh.

3 comments:

Anonymous said...

I'm sad, but not surprised, that you're having to spell this out for your doctor. Good for you for being proactive and being your own advocate. I hope this new medication will be an option for you.

Kathleen

mamefatimdc said...

Thinking of you

Book Woman said...

jeez, what a drag. You'd think that doctors would tell us about every possibility. The idea that the patient now has to do research about every aspect of their problem and then order what they want from the menu as if the doctor is a waiter and not a health professional is astounding. So sorry you have to go through all this on top of everything else.
Thank goodness you live in a place where you actually >can< do the research and ask for what you want.
love as always.
Amina