Monthly Archives: January 2012

A Screening Misadventure

It was supposed to be a routine item that I just checked off
my health care “to do list.”

Instead, I unknowingly embarked on a journey that left me
with more questions than answers, a fear that the screening and diagnostic procedures
might actually be harmful and extreme frustration with the lack of opportunity
for thoughtful conversation with my doctors about weighing the risks and
benefits of the decisions I was expected to make during the process.

Like many people, I was completely surprised to suddenly become
the subject of further medical scrutiny. I received a phone call from the
hospital that my screening mammogram had revealed “a suspicious abnormality.” I
wasn’t too alarmed at first because this wasn’t the first time I had been
called back for additional mammography studies. It was when the radiologist
came in and explained that the micro calcifications in my right breast should
be biopsied because, he explained, such calcifications are sometimes associated
with cancer.  As I tried to collect my thoughts, he suggested that I call my primary doctor for a referral to a surgeon. A surgeon?! When I walked
into the hospital, I was a healthy person. By the time I walked out, I was running disaster scenarios in my head.

With a referral in hand, I contacted a surgeon who worked me
into her schedule the next week. It seemed like an eternity before I saw her. I
tried to do some research on the Internet but not so much reading that I would
get myself freaked out. I was really hoping that she would look at my
mammograms and tell me everything was fine. Instead, she seemed to accept the
radiologist’s classification as the final word. I was shocked. A biopsy? Me?  I asked her what would happen if I decided to wait and see what my mammogram showed in a year. She said the choice was mine but it was clear that she felt I should do the biopsy. The suggestion that there could be cancer in my body and it might be dangerous was enough to instill intense fear that made it hard to tolerate the uncertainty. The biopsy would
eliminate the uncertainty, she counseled.  OK, I told her, I’ll do it.

The good news was that she suggested a stereotactic biopsy
which is a less invasive procedure. The bad news was that the procedure was not
fully explained to me in such a way that I felt adequately prepared. This procedure
involves lying on your stomach on a long table that is not well-padded. You
must lie on the table so your breast tissue hangs down through an opening in
the table. This requires that your turn your head to one side and for me this
created discomfort in my neck. Pretty soon, my left arm, which was bent by my
side, started to feel like it was going to sleep. Fortunately when I
communicated my discomfort to the nurses, we repositioned my arm and a
pillowcase was stuffed gently under my head – that was as much padding as they
could offer.

Meanwhile, the nurses and surgeon were trying to make
adjustments so that the compression (they use mammography to guide the small
surgical implement which removes tissue for the biopsy) was sufficient to
create a clear image on their computer screen. It’s like having a mammogram
only it is longer and more intense. The doctor did not give me a local
anesthetic to numb my breast until after the initial compression during set-up.
Come to think of it, I could have used a little Lidocaine in my ribs that were
pressing into the table! It wasn’t until I was climbing up onto the table to
get into position that one of the nurses informed me that after the biopsy the
doctor would place a small titanium clip in my breast in case further surgery
was necessary. I later learned that this has become routine. Maybe it was
routine for the medical team but it wasn’t for me and I felt angry that this
was not explained to me ahead of time. I felt like I had climbed up on to a
medical conveyer belt and really didn’t have much control over what was
happening.

In the end, the results of my biopsy were negative! I was
flooded with immense relief and yet I was also upset by what I had gone through
physically and emotionally as a result of this screening process. The studies,
doctor visits and the biopsy have cost me thousands of dollars. And I was
healthy the whole time! It felt like I was guilty until proven innocent. I
wondered if I should have made a different choice. I wondered what choice I
should make the next time.

I have learned a lot during this experience.  Digital
mammography now allows doctors to see breast tissue in new ways. My surgeon
explained that before digital mammography they would not have even seen the
calcifications. I learned that medical science is catching up to this new
technological frontier; seeing something and knowing what do about it are two
very different matters.

I also realized that my emotional frame of reference is based on a time when finding an abnormality probably meant you were in big trouble – that is not necessarily the case now.
I learned that there are varying and even conflicting opinions among experts
about how often to get mammograms, at what age and even how well they help us
find cancer. Meanwhile, if anything doctors don’t understand is found the
biopsy is the only way to further investigate and that means many healthy women
are enduring experiences like mine. That may ease our minds but do the benefits
outweigh what we put our bodies through?

Finally, I realized how difficult it was to have a thoughtful conversation with any
doctor. My primary care doctor simply urged me to see the surgeon. The surgeon
deferred to the indication on the radiologist’s report classification. The
radiologist sent me to the surgeon.  It seemed like each person was focused only on not having “something” missed on their watch. The surgeon was blunt about it. She told me that it is her job to find cancer. There was one problem because they had missed something – me. I was the person attached to the body that in this process had come to feel like a battlefield for doctors on a search and destroy mission. In the end, I felt like maybe I had been hit by friendly fire!

My hope is that our experiences will prompt us all to begin
conversations – with our doctors and among ourselves so that we can all benefit
from what we are learning on these new and evolving frontiers. Too often, we
feel alone in our journeys only to discover that there are others with wisdom
and experience that brings light to the grey area we are all navigating as
medical professionals or as patients. Given my recent experience, I believe we
will have to insist on these conversations and look proactively for those
willing to have them.

 

By, Ginger Murphy

Our Video Presentation: Wellness Day at Paoli Hospital, Paoli PA

Please watch the scenes of one of our Wellness Days. Our Wellness Days are designed to introduce breast cancer patients to complementary therapies that can help restore their health.  In collaboration with area hospitals, we regularly host these events where trained professionals lead discussions in acupuncture, massage, yoga, meditation and nutrition.

By, Uniteforher