MY LIFE Matters - Advocacy in Action - 5

ADVOCACY IN ACTION The Power of Advocacy
I could no longer keep this to myself.
I talked to my husband about what I
knew thus far, which wasn't much. We
had no idea what we were facing or
how to face it. Cancer could clearly be
seen on the mammogram and ultrasound,
but I needed a biopsy? I didn't
know much about breast cancer, and
although I had a family history, it had
been many years prior, and I would
come to find out a lot had changed.
There were advancements that I knew
nothing about. Meeting with a breast
cancer nurse navigator the day of the
biopsy helped a lot. A few years later I
would learn the importance of a nurse
navigator and social support resources.
I was still at the point where I knew
very little about breast cancer. In my
mind, I am thinking I'm just going to
lay on a table and get a quick needle
for the biopsy. Nope, not the case. My
tumors required a stereotactic biopsy
where I had to lay on a table in prone
posit ion with my breast through a
hole where I was prodded with several
needles. I did understand the biopsy
would confirm cancer, the subtype (I
still didn't know what that meant) put
markers in my breast where the tumors
were for surgery and determined my
treatment plan. At this point, we waited
for the results and an appointment
with a medical oncologist. Meeting
with the first medical oncologist did
confirm that I had breast cancer and
it was Her2+. I would need to have
chemotherapy and targeted drugs to
shrink the tumors before surgery. I
was experiencing pain in my ribs, and
I felt like I was in a fog mentally. It is so
important, if possible, to have someone
with you at important appointments.
Although I felt uncomfortable with
the doctor, I didn't speak up because
I was uncertain of myself and what
I was really feeling. Two important
things happened that day. The doctor
was attentive to my complaint of pain
and ordered a pet CT scan. My husband
was also uncomfortable with the doctor,
and he spoke up about his concerns. At
this time, we didn't know how crucial
it would be to have an oncologist who
was knowledgeable about research and
would communicate with me the way
I needed. The scheduler understood
and got us set up with a new doctor.
I had a port placement procedure and
pet scan. I received a call ahead of my
appointment with the new oncologist.
She called me to introduce herself and
strongly recommend I bring someone
to the appointment.
At my appointment on March 19,
2018, I received my final diagnosis of de
novo stage IV metastatic breast cancer.
De novo meant I was stage IV at my
diagnosis. Metastatic meant the cancer
had already spread to other parts of my
body outside the breast. In my case, it
was bones and liver. Huh!? What?! The
fog in my mind got thick. All I could
think was I'm about to die. What about
my children? My youngest son was just
turning five, my daughter was a senior
in high school and going to college, and
my oldest son, although an adult in his
twenties, still needed his mother. All I
could really remember from that visit
was the doctor seemed nice, I would
have treatment forever until I ran out
of options, and that the infusion nurses
seemed nice. When we got home, I
cried with my husband and told him
that no matter what was going on with
my health in September, my daughter
should still be packed up and in college.
I decided I would have to tell my family
I had breast cancer, but I couldn't
tell anyone the cancer was stage IV. I
couldn't handle anyone else's emotions
about stage IV cancer because I couldn't
handle my own emotions. I couldn't
allow my stage IV breast cancer diagnosis
to overshadow the excitement
of my daughter's senior year of high
school. It was at this point I realized I
had to make an effort for my life-to
make decisions, learn things, and just
figure things out. The first important
decision was trusting my oncologist
and deciding to have treatment at my
local hospital.
I started a new routine of treatment
every three weeks, st i l l working in
healthcare receivables and being a
mother and wife. After three months
of treatment, my scans revealed a good
response to the treatment, the tumors
were shrinking. After another three
months scans revealed I was " NEAD "
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
5
My oncologist
helped me find a new
oncologist about 20
minutes away from
the predominantly
African American
community I lived
in. This would be my
first introduction to
disparities in care.
I quickly noticed
the higher quality
facilities, quantity
of staff, and an
overall better
atmosphere.
MY LIFE Matters - Advocacy in Action

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