Breaking the Silence on Ovarian Cancer: Guyanna’s Story

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.

After her experience, 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 Chapter. “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 semester.

“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.

 “It’s really 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,” Ackison says.

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.

If positive, Dr. Edwards recommends the daughters be screened as well. “If they are positive, then they might want to change their reproductive decisions as they get into their 20s and 30s,” says Dr. Edwards. “And certainly [they] need to be followed by someone who knows the limitations of the available screening tests.”

Read more about Ackison's personal experience with ovarian cancer and her ongoing treatment at UPMC. 

More information on ovarian cancer getting involved in the NOCC is available here. 

Meet Guyanna! Beating the Odds Against Ovarian Cancer

By Jessica Krehlik

Guyanna Ackison has always been a strong individual. As an active duty military nurse, she served in Operation Iraqi Freedom while raising two beautiful daughters. But one morning, Ackison woke up with the worst pain she had ever experienced. “I knew that this was not something that I could ignore,” she says.

She visited her primary care doctor, who ordered an ultrasound and found a ruptured ovarian cyst. After identifying additional cysts, her doctor referred her to a gynecologist who told her to “wait and see,” rather than take action.

Fortunately, Ackison is not the type who sits around and waits for answers. Currently a nursing student at the University of Pittsburgh and aware of her strong family history of cancer, she began researching ovarian cysts on her own. “I just had the gut feeling that there was a little more to this cyst than being a regular cyst,” she says.

Guyanna Ackison, ovarian cancer advocate, 
poses with her daughters, Carissa and Aeliana

Ackison’s research led her to Robert P. Edwards, M.D., a UPMCgynecologic oncologist who recommended genetic counseling with specially trained counselors who interpret family history.

“Everyone talks about the genetic testing which is molecular genetic testing, but that actually can be ordered by any clinician,” Dr. Edwards said. “We strongly recommend the evaluation piece," which is offered at both Hillman Cancer Center and Magee-Womens Hospital of UPMC.

During the genetic counseling process, Ackison needed to get medical records for her mother, who died from cancer when Ackison was only 14 years old. She believed her mother passed away from colon cancer; however, she discovered her mother kept a major secret.

“I found out my mom had ovarian cancer. And they thought it was two primary tumors, which is pretty odd,” she says.

Her genetic counselor recommended genetic testing for the BRCA gene mutation, which can indicate an increased risk of breast or ovarian cancer. But despite her family history – in addition to her mom, her mom’s sister had breast cancer and died at the age of 35 and her maternal grandfather had pancreatic cancer – the results came back as an uninformed negative. No one in her family had ever had genetic testing, so it was unclear if there was a genetic mutation in her family.

With no real way to identify her results as a true negative, Dr. Edwards diagnosed Ackison’s condition as endometriosis, which occurs when the cells that normally develop in the lining of the uterus develop outside, either along the pelvic wall, on the ovaries or in the fallopian tubes. They discussed treatment options.

“At that point in my life, I had two kids, I was recently divorced. I wasn’t dating anybody, not planning on having any more children,” she says. “My mom passed away when I was very young, and I wanted to prevent that from ever happening to my children.”

Together, they determined her best option was to have a preventive hysterectomy and prophylacitic oophorectomy, which is complete removal of the uterus and ovaries. By doing so, Ackison minimized her risk of developing cancer as she grew older.

“My daughters are probably my biggest driving force,” she says.

Post-surgery, Ackison was prescribed hormone replacement therapy because of her young age. But just a few months later, signs of endometriosis resurfaced.

An MRI and an exploratory laparoscopy found precursor lesions for clear cell ovarian cancer, which was a sign of atypical endometriosis.

“It’s likely that’s what was involved with her mother’s disease,” says Dr. Edwards. Atypical cells found in a benign or non-cancerous condition like endometriosis are “worrisome, because you have an inflammatory condition and you have the precancerous cells, which are a bad combination.”

Research has yet to determine whether or not atypical endometriosis is associated with the BRCA mutation, but it is defined as a pre-cancerous condition.

“I had gone from dodging a bullet to having these precursor lesions for organs that I didn’t even have anymore and there’s no way to test,” Ackison says.

Now, Ackison regularly undergoes surgery so Dr. Edwards can remove and biopsy the lesions, which line her abdominal wall and vaginal cuff. She also gets regular blood tests and Dr. Edwards has prescribed her a type of progesterone to try and control her condition.

“She’s a young woman who should be having estrogen for good overall health, and so we’ve been running this balancing act between keeping the condition at bay versus giving her sufficient hormonal replacement so she can function as a ‘normal’ person for her age,” he explains.

Fortunately for Ackison, her cancer risk is “essentially zero,” Dr. Edwards says.

Ackison is now focused on completing her bachelor’s degree in nursing at Pitt and would like to work in gynecologic oncology once she retires from the Army in 2019. “I definitely feel that [this] is my calling in life,” she said. She also devotes her spare time to volunteering with the Pittsburgh chapter of the National Ovarian Cancer Coalition (NOCC).

So far, Ackison had clinical rounds at both UPMC Presbyterian in neurology and Magee, where she had the opportunity to work with patients and survivors of ovarian cancer. 

“It really reiterated why we’re here—why I do what I do as a nurse, and why the NOCC does what they do," she said. "It’s for the survivors and for educating women."