Evidence-based medicine. It is what we all strive to
provide. It means employing the most up-to-date knowledge to the approach of
medicine, from preventive care to screening to the diagnostic work-up and
treatment. Wherever the data points us, that’s what we should do. Yet putting
it into practice can sometimes be the most challenging part of being a doctor.
I was reminded of just how difficult it is when my patient,
Jody*, recurred. She had been diagnosed with
a rare type of ovarian cancer two years earlier. At surgery it was confined to
the pelvis without evidence of abdominal spread. Chemotherapy had followed and
with each cycle, her CA-125 (which was elevated at diagnosis) had decreased
until it reached the normal range. Following her sixth cycle, a post-treatment
scan showed no evidence of disease.
At her first post-chemotherapy visit, I relayed the results
of her CA-125 and CT. “Based on both, you are now in remission.”
“Wow,” she said. “I am so relieved this is over. What comes
next though?”
At that point I discussed her follow-up. “Your risk of
recurring will be greatest in the next 3 years,” I said. “As such, I’d like you
to be seen here every 3 months for a physical exam that will include a pelvic.
I really wouldn’t recommend anything more.”
“Wait–no blood tests? What about imaging?” she asked.
“Well,” I answered, “the data suggest that nothing else will
be very helpful. I know we measured your CA-125 during treatment, but it was to
help me guide the impact of chemotherapy. After treatment, a large randomized
trial done in the United Kingdom showed that routinely measuring CA-125 isn’t
helpful [1]. In that trial, women entering remission agreed to have their
CA-125 levels checked but the results were masked. If their CA-125 rose above
twice the upper limit of normal, patients were randomly assigned to one group
who were told their CA-125 and asked to start chemotherapy as soon as possible
(called the “early” chemotherapy group) or to another group who were not told
their CA-125 and only started chemotherapy when clinical or symptomatic relapse
was diagnosed (called the “delayed” chemotherapy group). The upshot is that
overall survival was no different between either group. The only impact was
that women in the early chemotherapy group experienced worsening of their
perceived health sooner than those treated in the delayed group.”
“Therefore,” I concluded, “on the basis of pretty good data,
it would be very reasonable not to follow your CA-125 if you are feeling well.
However, if you develop any symptoms at all, or if you are worried at some
point, we could certainly check it. As for imaging, I wouldn’t subject you to
CT scans at regular intervals if you feel well. If we do a scan, it should be
because there’s a question or a concern.”
She had looked at me then, not quite sure what to make of
this. “Okay, but if I want my CA-125 checked every 3 months you’d do it?”
“Yes, I would,” I said. “I just wanted to make sure you had
all the information you needed to make that decision.”
“Fine,” she continued. “I would really prefer we checked my
CA-125 when I came in for my exams. It just doesn’t make sense to me that it
wouldn’t be helpful.”
We initiated follow-up and she remained clinically well. At
her last follow-up, she was well and had no symptoms. She had been back to work
full-time since the last time I saw her. Overall, she had re-adjusted to her
life and achieved her “new normal.” Her exam was normal as well without
anything of worry noted. I ordered her CA-125 and scheduled her to return in
another 3 months.
Unfortunately, her CA-125 result came back markedly
elevated. I called her and gave her the results, recommending that we get a CT
scan. She agreed.
Jody returned to my office the following week. Her CT showed
new growth in her abdomen, consistent with peritoneal disease. I started
to review options for treatment, but she stopped me. “I just need you to know
that I am angry,” she said. “Thank God I asked to have my CA-125 followed–it’s
how we picked up this disease. I can’t even imagine where I’d be had I taken
your advice and didn’t do bloodwork and just waited for symptoms. Who on earth
would follow such advice? It’s like you had asked me to put my head in the sand
and ignore what was going on around me. I’m sorry, but I could never do that–and
it turns out, I was right.”
I wasn’t prepared for her anger, especially about a
conversation we had had years earlier, but I also knew that rehashing the data
would serve no purpose. So, instead of going through the data once more, I did
what I thought was best. I apologized:
“Jody, I am sorry that you had felt like I was imposing a
recommendation on you. It was not my intent. I had hoped to let you know of
your options, so that together, we could choose a surveillance strategy that
made sense to you. To do it, I wanted
to make sure you knew that there was data available. If it came across any
other way, then I take responsibility.”
Ultimately, we moved past this conversation to a more
pressing one about how to proceed with treatment. But Jody reminded me once
more that evidence has its place–to inform decisions, not as a mandate for
care. In the end, the data need to be interpreted by our patients, in the
context of their own preferences and values, and each one is different. I
guess, in the end, Evidence is able to inform our guidance, but it should not
be used to enforce mandates.
Reference
[1] Rustin GJ,
van der Burge ME, Griffin CL et al. Early versus delayed treatment of
relapsed ovarian cancer (MRC OV05/EORTC 55955): a randomised trial. Lancet
2010; 376:1155-63.
*Name and circumstances changed
to protect privacy
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