By Jessica Krehlik
Guyanna Ackison, an Army health care recruiter, University
of Pittsburgh nursing student and mother of two, found her calling with the National Ovarian Cancer Coalition (NOCC)
. Watch the video above to learn about her cancer journey with UPMC, where she received genetic counseling and a preventive procedure.
Ackison underwent a precautionary procedure known as a preventive
hysterectomy (removal of the uterus)
and oophorectomy (removal of the ovaries) at the age of 33 after developing severe symptoms of endometriosis
, where tissue
normally found only in the uterus is present elsewhere in the body. Due to her extensive family history of breast
and ovarian cancer — she lost her mother to cancer at age 14, and only later
learned it had been ovarian cancer — she decided a complete
hysterectomy with the removal of the ovaries
would be the best bet to have
a long, healthy, cancer-free life.
, she was fueled with the desire to become an advocate for
awareness of the disease, and to engage in and support the survivor community.
She attended the NOCC’s annual Walk to Break the Silence on Ovarian Cancer TM
in September, 2011, and found a new type of family
amongst the members of the NOCC. “I did not know a single person, and I felt
more at home than I probably had ever felt in all my travels,” says Ackison,
who was stationed in Germany and Iraq during her career as a military nurse.
“It was very calming.”
Also in attendance at the event were staff members from the
office of her gynecologic oncologist, Dr. Edwards
who has been involved in and advocated for the NOCC sine the establishment of
the organization’s Pittsburgh
. “It’s important to me that the people [who] are our health care
providers and take care of us are involved in organizations that the patients
find important as well.”
At the walk, Ackison’s first NOCC event, she decided to sign
up to volunteer. She recalls thinking, “This would be a nice way to give back,”
and found herself jumping right into active volunteer work. She describes her
experiences as a NOCC volunteer as extremely fulfilling, and compares it to the
fulfillment she found from serving in Operation Iraqi Freedom and during the
rest of her Army career.
During her first duty station in the military, Ackison
worked in pediatric hematology oncology (cancers and blood-related disorders) and
fell in love with her work. After returning from Iraq, she worked in a hospital
in Fort Riley, Kansas, where she discovered her passion for education.
Today, Ackison goes to health fairs and talks to people
about ovarian cancer—a disease that “that no one talks about because it’s your
ovaries,” she says. She also helps
present a lecture on ovarian cancer for one of her nursing classes at Pitt each
“I was very upset when I found out my mom had [ovarian
cancer],” Ackison explains. “Obviously then she didn’t understand the effects
that it could have on me, but I just feel like it’s something that you need to
tell your children.” Ackison’s own daughters are aware of her condition,
volunteer regularly with the NOCC, and are her biggest driving force for
advocating ovarian cancer awareness.
“It’s kind of hard when your 9-year-old comes to you and
asks how it starts, and how do you get ovarian cancer,” she says. “To explain
without being too technical, I just told her the cells kind of have a dance
party and go a little crazy…but it’s not a good dance party.”
“The girls are absolutely amazing,” says Ackison. “They
volunteer with us so they’re aware of what we do and who we are there [to
support] — the survivors.”
Ackison is currently part of the NOCC council and works on
logistics for the annual Run/Walk event, including signing up new volunteer
members and fielding questions.
“I think awareness in being able to offer preventive
treatment rather than operating on advanced cancers is how we can have an
impact on the disease,” says Dr. Edwards.
important for families to talk to one another. When [women] are experiencing
things that just don’t seem right, it’s not always okay to push it off,”
Being aware of family history is key, notes Dr. Edwards.
Even so, the current recommendation for any woman who has diagnosed with
ovarian cancer is to participate in BRCA testing.
More information on ovarian cancer getting involved in the
NOCC is available here
Labels: BRCA, breast cancer, cancer, cancer awareness, hysterectomy, ovarian cancer