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. 

Angelina Jolie’s Message Important for African American Women

By Draion M. Burch, D.O.

Last month, BRCA genetic mutations (BReast CAncer susceptibility genes) were highlighted in the media when actress Angelina Jolie revealed she had a prophylactic double mastectomy after testing positive for a genetic mutation.  Womenwith the BRCA genetic mutation have a higher risk of developing breast and ovarian cancer than the general population. BRCA is responsible for five to seven percent  of breast cancers and about 10 percent of ovarian cancers.

Draion M. Burch, D.O.

Recently, a study found that African American women with breast cancer are more likely than other women to have genetic mutations linked to their disease, and some of those mutations extend beyond the common BRCA1 and BRCA2mutations. One in five black women in this study had a BRCA mutation. This new data helps explain why black women have higher rates of breast cancer at younger ages, more aggressive forms of breast cancer, and worse chances of survival. Studies also reveal that African American women are less likely to be referred to genetic counseling even if they meet the criteria.

To better understand genetic breast cancer, here are the answers to some commonly asked questions:

What is BRCA?

BRCA 1 and 2 are inherited tumor suppressor genes. Mutations in these genes cause breast and ovarian cancer. BRCA 1 has a lifetime breast cancer risk of 65-74 percent and a lifetime ovarian cancer risk of 39-46 percent. BRCA 2 has a lifetime breast cancer risk of 65-74 percent and a lifetime ovarian cancer risk of 12-20 percent. 

Who needs to be tested for BRCA? 

All women who meet the following criteria:

• A personal history of breast cancer diagnosed at age 40 years or younger, a diagnosis of breast cancer affecting both breasts, or a diagnosis of both breast and ovarian cancers.
• A personal history of ovarian cancer and a close relative with ovarian cancer or premenopausal breast cancer or both.
• A personal history of breast cancer at age 50 or younger and a close relative with ovarian cancer or male breast cancer at any age.
• A personal history of breast cancer at age 50 or younger and a close relative with breast cancer 50 years or younger
• A personal history of breast cancer at any age and two or more close relatives with breast cancer at any age.
• A close relative with a known BRCA1 or BRCA2 mutation
• Women of Ashkenazi Jewish ancestry  with a close relative who has breast or ovarian cancer, a personal history of ovarian cancer, or a personal history of breast cancer at age 50 or younger
• Women with ovarian cancer, peritoneal cancer or fallopian tube cancer
• Unaffected women with a close relative that meets one of the previous criteria

How is BRCA tested?

It’s a blood test that uses DNA analysis to identify mutations in the BRCA genes. The initial step is for women to meet with a genetic counselor who will take a detailed medical and family history and assess your risk for breast and ovarian cancer. Your counselor will discuss the implications of a positive, negative and uninformative test result. You will also review options for surveillance, or ways to detect cancer early, chemoprevention (taking medications), and risk-reducing surgery. Possible psychological, emotional and familial implications of test results are also discussed.

How much does BRCA testing cost?

The BRCA testing and genetic counseling should be covered by any plan started after March 23, 2010, because Health and Human Services has declared this one of the mandatory free preventative care measures covered under the Affordable Care Act.

What surveillance is needed for women who are BRCA positive?

Breast surveillance includes twice yearly breast exams by your doctor and annual mammogram and MRI no later than age 25. Surveillance for the ovaries includes having semiannual pelvic exams, annual transvaginal ultrasound imaging and blood tests.

What are risk-reducing strategies for BRCA positive women?

There are 2 options: chemoprevention and surgery. The chemotherapy drug Tamoxifen has been shown to reduce risk of breast cancer by 50 percent in pre- and postmenopausal women. Another FDA approved drug called Raloxifene has also been shown to reduce breast cancer risk-but only in postmenopausal women. Removal of both the ovaries and fallopian tubes reduces ovarian cancer by 90 percent and breast cancer by 50 percent. This should be offered by age 40 or when childbearing is complete. Bilateral mastectomy (removal of healthy breasts) reduces breast cancer risk by 90 percent.

Draion Burch, D.O., is a clinical associate professor of obstetrics and gynecology with the University of Pittsburgh School of Medicine as well as a  board-certified, practicing obstetrician and gynecologist at Magee-Womens Hospital of UPMC.