MY LIFE Matters - Advocacy in Action - 29

ADVOCATING FOR ENDOMETRIAL CANCER Use Your Voice
WENORA'S
STORY
FORCE BOARD PRESIDENT
WENORA JOHNSON IS
A THREE-TIME CANCER
SURVIVOR. HERE IS
HER STORY, IN HER
OWN WORDS.
I was blindsided by my diagnosis.
As a military reservist, my health has
always been important to me. I exercise
regularly and eat the right foods,
and until my diagnosis, I received a
clean bill of health every year from my
doctor. Most people diagnosed with
colorectal cancer are over 60, yet I was
only 45 when doctors told me cancer
had been growing inside me for almost
15 years.
I was determined to face the news
with positivity. I underwent surgery,
and after three months of chemotherapy,
my troubles seemed to be over. The
cancer was gone.
What I didn't know was that I had
Lynch syndrome.
Other than my mother passing away
from brain cancer, I had no warning
signs in 2011 that Lynch syndrome ran
in my family. However, shortly after my
battle with cancer, my brother was also
diagnosed with colorectal cancer. Then
my aunt revealed that my grandfather
had died from colorectal cancer at age
38. In 2016, in light of this new information,
my oncologist recommended
that I undergo genetic testing.
I had been cancer-free for almost
five years when I learned about my
gene mutation. The more I researched
Lynch syndrome, which is linked to a
very high chance of developing endometrial
cancer, the more I knew that I
couldn't sit idly by and wait for illness
to strike again.
One of my favorite quotes by author
and pastor Charles Swindoll is, " Life
is 10 percent what happens to you
and 90 percent how you react to it. "
These words kept me going after my
stage IIIB colorectal cancer diagnosis
in 2011. I smile when I look back on
that year, not because I battled this
ugly thing called cancer, but because
I drove my kids half-crazy with the inspirational
quotes in giant letters that
I posted throughout the house.
CANCER RESURFACES,
AGAIN
In 2016, I decided to have a total hysterectomy
to lower my risk for additional
cancer-it wasn't a moment too soon.
During surgery, my doctors found that
I already had stage I endometrial cancer.
Fortunately, I didn't need further treatment
because the cancer was removed
before it had the opportunity to spread.
For Lynch syndrome patients, it's
normal to always be looking over your
shoulder, waiting for the next cancer
to show up. My life depends on me
staying one step ahead of the next
diagnosis, which is why I follow an
intensive screening regimen to detect
cancers early. I see my primary care
physician, oncologist, dermatologist,
gynecologist, and dentist at least once
every six months.
ADVOCATING FOR OTHERS
My experience has inspired me to work
with multiple groups to advance cancer
research and advocate for patients.
FORCE plays an important role for
those who have a predisposition to cancer
or who develop an inherited cancer.
I stalked the FORCE website for two
years searching for information and
trying to figure out a way to attend a
FORCE conference! Finally, when I was
ready, and because I knew that FORCE
advocates, brings awareness, and educates
individuals on hereditary cancers,
I reached out to see how I could be of
assistance. Now, as Board President,
I feel as though I have hit the jackpot
because with FORCE, I can gain more
knowledge about this syndrome and
share the information with others who
are just like me.
MY 90 PERCENT
I am now disease-free and that's the way
I'd like to keep it! As a Lynch syndrome
patient, it feels as if it is not a matter of
if, but rather when, the next cancer will
show up. When it does, my research will
have been completed and the battle will
be on. That's my 90 percent!
Like breast cancer, endometrial cancer
risk is prevalent and increasing.
That's why it's important to spread
awareness of endometrial cancer to
the breast cancer community. As my
experience shows, surviving one cancer
diagnosis does not protect you from a
second or third diagnosis. In the case
of endometrial cancer, awareness is key.
You can help raise awareness of
endometrial cancer by talking about
it with your friends and family. This
is especially impor tant within the
Black community where endometrial
cancer is more often found at an advanced
stage. FORCE and our partners
at SHARE, ECANA, and Black Health
Matters are part of a campaign called
SPOT HER, which is supported by the
pharmaceutical company Eisai. This
campaign focuses on the signs and
risks of endometrial cancer. l
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
29
https://www.facingourrisk.org/understanding-brca-and-hboc/information/risk-factors/other-cancer-risks/basics/uterine-cancer.php#text https://www.facingourrisk.org/understanding-brca-and-hboc/information/risk-factors/other-cancer-risks/basics/uterine-cancer.php#text https://www.multivu.com/players/English/8718031-spot-her-for-ec/
MY LIFE Matters - Advocacy in Action

Table of Contents for the Digital Edition of MY LIFE Matters - Advocacy in Action
