 It's
no fun having me as a patient
[My breast surgeon] Dr. McCready and I talked about
the surgery and what to expect. He asked if Maureen
[Trudeau, my oncologist] had put me on tamoxifen. I
told him we had decided on anastrozole (Arimidex) and
he said okay, but it made me anxious and nervous. He
had assumed I would be on tamoxifen. I began to worry
that I had pushed Maureen in the direction of Arimidex.
I knew she would never agree to do something she did
not feel comfortable with, but I couldn't let go of
the thought that somehow I had pushed and that, in the
face of two equivalent treatments, maybe she wouldn't
have suggested this option.
My anxiety
increased and I was angry with myself. I reminded myself
she was an expert and could not be swayed to prescribe
a treatment she did not believe in. But I couldn't let
go. I wasn't sure what to do. How could I call yet again
and have this discussion without being insulting or
pompous or just plain irritating? I realized that I
was doing exactly what I told my patients to avoid doing.
I was accepting a lot of free and unsolicited advice,
and it was upsetting me. I have always told my patients
that there will always be conflicting opinions, and
therefore to find the source they trust in. In the face
of uncertain knowledge, go with the opinion of the doctor
you have chosen, not the opinions of those you have
not chosen. I was furious with myself, but I couldn't
calm down. I had driven the bus — or at least it
felt like I had driven the bus — and I had only
a learner's permit. Maureen was the bus driver. I agonized
for hours about what to do. In our last visit I had
apologized for being difficult and acknowledged how
hard it must be to have a patient like me. She told
me I was a challenge and that she enjoyed the challenge.
I knew she certainly was never intimidated by me, that
she understood me and my difficulties in being a patient
no matter how hard I tried to be a good patient. But
somehow this felt different. Would I be insinuating
that she had not been the real decision-maker for my
treatment plan? Would I be giving her the message that
I didn't believe in her? But it was exactly the opposite.
What I had realized was that I didn't believe in myself.
I was not, am not an oncologist. And while I am a good
doctor, what makes me a better doctor is know- ing my
own limitations and restrictions. I decided at last
to contact her via email, thinking it would be the least
intrusive form of communication. Even so, I thought
she might fire me as a patient; I thought she just might
have had enough. I sat down and slowly constructed the
email. I sent it off.
Dear Maureen,
So I have to start this by fully acknowledging how difficult
it must be to be my doctor. How a modicum of knowledge
on behalf of the patient must be trying from your point
of view. . . . not always, but certainly at times!!
And I thank you for indulging my questions. But now
I am anxious that perhaps I have pushed too hard in
terms of my opinions and viewpoints. Whatever I do know,
I know that I certainly am not an oncologist and more
importantly lack your years of expertise, that accumulated
experience that accounts for so much of what makes an
expert an expert. What is so difficult about also being
me is that I get so much unsolicited advice from physicians
. . . the so-called benefit of their experience and
free advice. I remind myself and you that I chose you
as my oncologist because of my firm respect for your
expertise, training and academic knowledge. Above all
else you are empathic and patient with me. I know —
from my husband as well as the mirror — that that
is not always easy. I saw David McCready for my pre-op.
He assumed I would go on tamoxifen first then an aromatase
inhibitor.
Not an unreasonable
expectation. And I won't bother you with the other experts
who have added their two cents' worth. I wanted to settle
in my own mind that the decision to put me on Arimidex
is one you feel is the best choice for me. I worry that
I pushed for this. It is all so confusing — the
data on tamoxifen for two years followed by an aromatase
inhibitor, the newer ATAC study. . . . More than any
other patient I understand the uncertainty of treatment
and making decisions based on the best knowledge we
have at the moment, and accumulated expertise. So I
wanted to make sure that you are entirely comfortable
with the decision to use Arimidex rather than tamoxifen
first. I wanted to make sure that you think the TAHBSO
[total hysterectomy] is the right thing to do as well.
...Again,
thank you for caring for me and putting up with me.
I'm getting better at being a patient—or at least
I will try!!
My deepest respect,
Marla
That night
I went to sleep feeling unhappy and uncomfortable. I
knew Maureen was out of town for a week. I would have
to sit and wait. And if the email seems really technical,
all it really boils down to is yet another agonizing
choice under conditions of uncertainty. It is so damn
hard to have cancer when there are no clear answers.
I was fortunate that Dr Trudeau could see what was going
on in my head and the anxiety I faced about knowing
a lot about a little and realizing that perhaps I had
intervened too much. Her response, once she got home
to read the email, was swift and reassuring: "You're
not a pain in the ass!" She then went on to review the
science of the decision and her opinion that the decision
to go directly to Arimidex, rather than tamoxifen, was
an entirely reasonable one. But more important, she
ended the email with the following: So, no, you didn't
push the discussion in a direction I wasn't already
considering. But having said all this, you and I both
know there can be more than one right answer. Often
we only know what was best in retrospect.
Maureen
That was
all I really needed to hear. I knew all too well the
uncertainty in disease management and could accept the
intrinsic uncertainty. What I could not accept was being
my own doctor. I had learned a valuable lesson. My oncologist
was the expert. I was not. You see, being a doctor does
not necessarily mean you know everything in every specialty.
While it is important to be informed, in the end it
is more important to have a team you trust and can collaborate
with. I now had the answer to the question that had
been asked of me so many months earlier. It is important
to have the doctor whom you believe knows the most about
you and the science, and to let him or her guide you
through this maze.
From
Chapter 16 of Life in the Balance: My journey with
breast cancer by Dr Marla Shapiro. Reprinted with
permission from HarperCollins
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