MY LIFE Matters - Health Literacy - 22

From Nurse
to Patient
HOW UNDERSTANDING MY HEALTH SAVED MY LIFE
BY JENNA LYONS
here in this chair with all my faith in you
to save my life so I can go back to being a
mother and a wife. Why do I keep walking
out of here feeling so uneasy?
But I, as a healthcare worker, had faith
in the system. I had faith in Boston hospitals.
I had faith in THE Boston hospital
that you think of when you think of
cancer. Because of this, I ignored my intuition
on multiple occasions. I assumed
no news was good news when I was told
that I had an excellent prognosis with
stage Ib invasive ductal carcinoma, and
that no chemotherapy or radiation would
be necessary.
In September of 2019, I went back to
work after my June mastectomy followed
by an emergency surgery that lengthened
my recovery process. I was ready to get
my life back in order. On a break during
one of my first overnight shifts since my
return, I decided legally to look at my
pathology report as I still had questions
regarding the result. I hadn't put much
thought into it after they had told me
they would be sending one of the tumors
back for extra testing because I was told
that the result wouldn't matter. Out of my
four tumors, one was being sent back to
test its HER2 status. I was told that breast
cancer is treated based on the pathology
of your largest tumor and that my largest
tumor was estrogen receptor/progesterone
receptor (ER/PR) + HER2-negative.
This, combined with the size of the tumor,
meant I was in the clear and would only
need Tamoxifen for 10 years. I had done
research of my own and found this was
true and felt comfortable moving forward.
However, there was an addendum to my
pathology dated four days after I had last
seen my doctors. This addendum read:
F
22
inding your place between healthcare worker and patient when you find yourself in
the position of navigating your own disease process is something they don't teach
in nursing school. How do you put down the stethoscope? Should you?
April of 2019 was the beginning of my now lifelong battle between patience
and persistence.
They don't tell you how much autonomy is involved in a cancer diagnosis and treatment
options until you're in the chair making the decisions. Lumpectomy? Mastectomy?
Radiation? Chemotherapy? Ovarian Suppression? This drug? That one? We advise,
but it's up to you. What? Why? You're the professionals. My medical expertise stops at
about 10 pounds and under one year of age. I'm a neonatal intensive care unit (NICU)
nurse. I know nothing about oncology. I don't even have a family history of cancer. I'm
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
" Final Diagnosis: HER2+. " My stomach
dropped into my ankles. I can still remember
the way everything faded away around
me. I knew what this meant. This meant
that the tumor in question for HER2-positive
status was NOT the smallest tumor,
it was the largest. This meant that I was
supposed to have received chemotherapy
three months earlier. This meant
that I was now at a much higher risk for
metastatic recurrence. This meant that I
would have to question two doctors at one
of the most prestigious, trusted hospitals
on this planet.
MY LIFE Matters - Health Literacy

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