MY LIFE Matters: TNBC Patient Voices Issue 2022 - 23

because I had to hold onto many unanswered
questions for a week or so until I
could meet with an oncologist. Ending
the call, I was afraid, heartbroken, and
nervous as hell about what my future
held for me.
During the days leading up to my
appointment, I researched breast cancer,
local cancer treatment centers, and
oncologists. Google was helpful and
harmful at the same time. I was able to
learn more about the scientific subset
of breast cancer, but I was also equally
horrified by some of the information,
photos, and statistics I found. I did not
want to allow those negative thoughts to
invade my positive mindset, so I began
to limit my time searching on Google.
I also researched oncologists to see if
their online presence and/or patient reviews
would be a great fit for my cancer
state. After narrowing down my top five
choices, I scheduled appointments with
each of them to see if we could work well
together as I began this cancer journey.
These meetings were considered interviews.
I needed to feel a sense of comfort
as I moved forward in my journey.
The oncologist who was available first
saw me for my initial appointment following
my diagnosis notification. This
doctor had no clue who I was. She read
my chart for the first time when she
entered the exam room and asked me
to verify the information. During that
appointment, the two most important
things to me included, 1.) explaining the
cancer diagnosis, and 2.) creating a plan
of care that would allow me to continue
functioning physically, emotionally,
and mentally. I do not remember much
of the conversation, as I checked out
after she said, " triple-negative breast
cancer is the most aggressive subtype
of breast cancer. " My mind was racing,
I began sweating, and all I could do was
think about all the statistics, photos,
and clickbait titles from my previous
Google searches. At the time, I did not
know what triple-negative breast cancer
(TNBC) truly meant. I now know that
TNBC means I do not have any positive
hormone receptors; it is the most aggressive
subtype and there are currently
no targeted treatment options available
for those living with TNBC.
The cancer diagnosis was explained
to me using scientific terminology, and
I did not completely understand the
information I received at the time. I
was shocked all over again. I was at the
appointment physically, but I was not
completely present mentally. I recorded
my appointments at the beginning of my
journey because I was ignorant, and I
wanted an opportunity to listen to the
conversations after completing my own
research. I would encourage everyone to
take a friend or loved one to document
pertinent information. Sometimes in a
state of high emotion, we do not always
hear what is being said to us. Having an
extra pair of eyes and ears has helped
me plenty of times throughout my
journey. My oncology appointments
started before the COVID-19 shutdown,
and I could take two loved ones to my
appointments. Fortunately, my family
members were my advocates, eyes, ears,
and notetakers-an essential part of my
care team. They did their research and
due diligence before my appointments
and thankfully remembered pertinent
questions that I wanted to ask my medical
team. They advocated for quicker
treatment and demanded swift services
when I could not (or did not) speak up
and advocate for myself.
I believe cancer patients are in shock
during their initial appointments and
should receive time to process the diagnosis
before discussing the follow-up
steps and creating a care plan. Additionally,
I believe oncologists should
explain the diagnosis using words the
patient can grasp at the time, be OK
when asked several clarifying questions,
and not show frustration or annoyance
as it is the patient's first time dealing
with cancer. They do not have expertise
like medical professionals do. Cancer is
a big deal, so I need my oncology and
medical team to have compassion, empathy,
and humility. We must be on the
same page fighting this disease together.
As of today, I am going into year three
of this metastatic breast cancer (MBC)
life, and I have learned that we should
MY LIFE MATTERS
TNBC PATIENT VOICES ISSUE 2022
23
MY LIFE Matters: TNBC Patient Voices Issue 2022

Table of Contents for the Digital Edition of MY LIFE Matters: TNBC Patient Voices Issue 2022
