MY LIFE Matters - Health Literacy - 8

Powerful Patient Stories BEATING THE ODDS
I Have Been Beating
the Odds My Entire Life
BY KEISHA STEPHNEY, TIGERLILY ANGEL ADVOCATE
W
hen I was diagnosed with triple-negative breast
cancer (TNBC) for the first time in 2021, (yes, I
said the first time) I was not equipped to handle
my diagnosis. I don't think anyone possibly could
be. Information is thrown at you so quickly you
don't really have much time to digest what is happening. I remember
sitting there watching the doctors mouth move but hearing nothing.
I was alone, numb and paralyzed with fear. It was a nurse navigator
who told me after I completed my exam and tests that based off
what they could see during the exam itself that it was most likely
cancer. I was told there was a 95 percent chance that it was breast
cancer, and I knew from that moment that the odds were not in my
favor. I left that appointment with no information, no resources,
no support, just a " go home and we will call you in about a week. "
How I wish this was a different experience. I wish I was provided
with the opportunity to have someone with me when I heard that
95 percent slap across the face. To get a probable diagnosis without
any guidance, resources, or information on ways to get educated/
empowered or to cope with my emotions was so impersonal, it still
hurts to this day. I feel as if I was robbed of that consoling hug, hand
holding, and support when I first heard my " possible " diagnosis. I
recall breaking down in the car with no idea how I even got there.
I sobbed uncontrollably for a good 15 minutes.
That week of waiting on an official diagnosis seemed like a
lifetime, but ultimately my fear was confirmed. Being told you
have TNBC is very scary. I immediately went into panic mode.
Any fear you could possibly imagine, well I felt it that day.
There was so much I wanted to know but I was unsure of what
I should know. I truly put myself in the hands of my care team.
I was desperate for information, to learn more, to understand,
and I found it very hard to put the pieces together. I did meet
with a nurse navigator. Unfortunately, in my situation, they
were not very active, involved, or supportive in my medical
care. The role of a nurse navigator is so important. It is their
job to assist you in navigating through your journey and aid
you in the process as you make life decisions. Every patient
should be allowed the opportunity to have a doctor or nurse
navigator sit down and explain the specifics of your diagnosis
and encourage you to ask questions, so you fully understand
your diagnosis and treatment options.
I relied solely on my care team to guide me in the right direction,
because in my eyes, they were the experts and I had
no idea about anything. During my appointments, I listened,
took notes, and then tried to do my own research. There were
significant gaps in what important medical information was
provided to me. The reality is I was not told or explained the
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MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
MY LIFE Matters - Health Literacy

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