MY LIFE Matters - Health Literacy - 6

Powerful Patient Stories SHARING MY STORY
day. " At my mammogram
and ultrasound appointments,
once again the same
look, they told me I would
have to schedule a biopsy.
The follow week I had another
biopsy, only for them
to tell me once again that
the cancer is back on the
right side.
I met with my team of
doctors and since the cancer
came back too quickly,
I opted to do a double
mastectomy. The following
week, I met with my breast
surgeon and the plastic
surgeon to map out what
was going to happen. My
breast surgeon told me she
would come in to remove
the tumor then the plastic
in the car until I came out. I finished my
radiation at the end of January 2019. After
I did more scans to make sure I was
in the clear, I followed up with a doctor's
visit from my oncologist. Since my cancer
was hormone related, she outlined
my treatment medication to be taken
going forward. It was daily medications
along with getting a painful hormone
blocker therapy injection every month.
The medical team was great; the injection
was administered to my abdomen,
which can be very painful, but following
a suggestion to use a numbing cream,
which I used every time, was very helpful.
I found it was helpful to use MyChart,
I referenced appointments, downloaded
reports, and reviewed all information
to bet ter understand my diagnosis
and prepare questions I may have for
my medical team or for my insurance
claim. I used Google, YouTube, joined
advocacy organizations, and connected
with breast cancer organizations, which
helped me learn, feel empowered, made
me feel like I was part of my treatment
plan, and helped me make important
medical decisions; all of which increased
my health literacy.
Fast forward to 2020, the pandemic happened,
and it was crazy. I was still on my
medications and getting my injections. It
was the day after Thanksgiving, I remember
because I had leftovers and it was " scan
6
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
surgeon would perform the reconstruction.
I had a double mastectomy with
DIEP (deep inferior epigastric perforators)
flap surgery, which was a 12-hour
surgery. The breast reconstruction is a
surgical procedure that restores shape
to your breast after a mastectomy, which
removes your breast to treat or prevent
breast cancer. Breast reconstruction with
flap surgery involves taking a section of
tissue from one area of your body-most
often your abdomen-and relocating it to
create a new breast mound. Breast reconstruction
with flap surgery is a complex
procedure performed by a plastic surgeon.
Much of the breast reconstruction using
your body's own tissue can be accomplished
at the time of your mastectomy
(immediate reconstruction), which was
done by fat transfer from my thighs and
my side area. I went home with several
drains, two at the top and two at the bottom.
It took me almost three months to
stand up straight. It was the most painful
surgery I ever had.
Following the surgery, I met with my
doctors who told me my scans are clear
again, but my oncologist suggested a new
daily drug in addition to continuing the
monthly injections. Now I receive two
additional injections. This new line of
treatment had to be injected into my
lower back on both sides very slowly. I
had multiple problems with this line of
treatment because of my IBS (irritable
bowel syndrome), which I was diagnosed
with a long time ago, so my oncologist
reduced the dosage.
My oncologist suggested physical
therapy twice a month because I had a
little lymphedema from the breast reconstruction
surgery, this was very helpful
physically and I was able to learn and
incorporate tips into my day-to-day life.
I had revision surgery with my plastic
surgeon to correct certain areas. A week
after I broke out with shingles, and it was
very painful. It was located on my left side
under my rib cage. I thought you had to
be old to get shingles, but I guess not. I
recovered from shingles three weeks later
and started back with my same routine. In
January 2022, I met with my doctors and
had my scans and everything was clear, so
my oncologist said we are going to check
back in a couple months and to keep up
with the monthly injections. It was decided
to discontinue one line of treatment.
MY LIFE Matters - Health Literacy

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