MY LIFE Matters - Health Literacy - 23

UNDERSTANDING MY DIAGNOSIS A Proactive Approach
And so, I did.
I did my research. I gathered protocols
from the hospital's website for treatment
as well as the website for treatment of
HER2-positive disease. The argument I was
expecting to hear was that my tumor was
small enough that this may not be an issue,
however this does not apply for patients
under the age of 35. I was 33. I drafted a
pleasant email with my attached findings
and went to bed that morning knowing life
was about to change for me again.
At 11:00 a.m., I received a phone call
from my doctor's nurse practitioner. She
was very kind and assured me that this
finding would not affect my treatment
plan. She told me there was a team meeting,
but that I should come in the following
week for an appointment to discuss
the findings. I was spinning. I knew she
was wrong. I knew my treatment plan
needed to be changed. Four hours later,
my oncologist called. He admitted to
this result being overlooked, but that it
was not by him. The result was allegedly
sent to the ordering provider, my breast
surgeon. He told me that the lapse in
time would likely not make a difference
because the tumor was under 1 cm. The
tumor was .9 cm. He said that if it were
" I want you to know that we have adjusted the way we
inform clinicians about HER2 results in response to your
very legitimate concerns. "
him, he would do chemotherapy. He
wanted me to come in the following Monday
for a team meeting and that I would
begin chemotherapy right away. Six days
later, I was in the chair receiving the first
infusion of 12 weekly Taxols and one full
year of Herceptin, a targeted treatment
for HER2-positive breast cancer.
When I arrived, I had a meeting with
my oncologist and no one else. He was
very brazen about what had happened
and repeatedly stated that my prognosis
was still excellent. I had done my research
and was sure this was not the truth, but I
kept silent. I knew something was off and
I knew this was not the time to speak up.
The biggest red flag was that there was
no team meeting. This made me wildly
uncomfortable. I had a feeling the team
had never been notified. I was right.
Unfortunately, I believe the time that
passed before receiving the correct treatment
was too long and the cancer cells
had already begun to spread throughout
my body. I suffered with bone pain for
most of 2021 before finally receiving an
MRI and being diagnosed with Stage
IV metastatic breast cancer with bone
metastases from my neck to my pelvis.
After contacting patient relations, I
" I am confident that my
diligence has saved many
lives, and will continue
to do so for many years
to come. "
was assured that my experience was not
only abnormal, but it was also a big deal.
That week I received a phone call from
the head of women's oncology. He was
very concerned and assured me that he
had not heard a single thing about this
occurrence until he received word from
patient relations. He called me in for a
private meeting and wanted to know
what I would like them to do about this. I
explained that I had three small children
at home, and I just wanted to be alive
for them. I also wanted to be sure this
would never happen to anyone else ever
again. He was kind and compassionate
and kept to his word. The only word he
was able to keep. Right before Christmas
I received an email from him stating, " I
want you to know that we have adjusted
the way that we inform clinicians about
HER2 results in response to your very
legitimate concerns. "
Today, I am 19 months into my fight
against stage IV metastatic breast cancer.
I have switched my care to a different
Boston hospital, and I could not feel safer.
Though I am saddened by the turn my life
took at such a young age, I am confident
that my diligence has saved many lives
and will continue to do so for many years
to come. My current team is supportive
of all my questions and concerns, and
without them, I know I could never thrive
the way I have been since October 2021.
There are many incredible doctors and
surgeons out there. We are all human
and none of us are above mistakes. I am
not writing this to scare anyone, but to
empower you to follow your concerns
and trust your gut. Health literacy saved
my life, and it wasn't just because I was a
nurse. After my diagnosis, I researched
textbooks on breast disease as often as
possible. I made sure I would never be
nodding my head in an appointment unless
I knew exactly what they were talking
about. You do not need a medical degree
to be part of the team who advocates for
your health. With responsible research
and the appropriate knowledge, you
could save your own life and potentially
many more. l
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
23
MY LIFE Matters - Health Literacy

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