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. 

Pittsburgh Day of Giving to Support Local Nonprofits

By Melissa Allen

Next Thursday marks the PittsburghGives Annual Day of Giving, a fundraising initiative led by The Pittsburgh Foundation. On Oct. 3, people are asked to donate a tax deductible contribution to the nonprofit organization of their choice; all donations made through PittsburghGives that day will qualify for a portion of a match pool from The Pittsburgh Foundation.

"The event is a unique opportunity for members of the University of Pittsburgh Cancer Institute (UPCI) and UPMC CancerCenter to participate in an important philanthropic challenge with The Pittsburgh Foundation, which awarded a $1 million gift to UPCI to establish an endowed chair to support innovative cancer research," said Nancy E. Davidson, director of UPCI and the UPMC CancerCenter. 

In the video above, Dr. Davidson talks about how the chair will be used and asks those interested in supporting cancer research to consider a donation on the Annual Day of Giving. To do so, visit PittsburghGives on Oct. 3 from 12 a.m. to 11:59 p.m. to make a contribution.

AACR Cancer Progress Report Shows Strides, Importance of Funding

By Nancy E. Davidson, M.D.

A new report out today by the American Association for Cancer Research (AACR) highlights the real challenges facing researchers working to find new ways to diagnose, treat and even prevent cancer. Even though there are more cancer survivors living today than ever before – and they are living longer than ever before – much important work still lies ahead.

 

Nancy E. Davidson, M.D.

The AACR Cancer Progress Report 2013 notes that more than 13.7 million cancer survivors are alive today, compared to just 3 million survivors in 1971. That’s due to cancer research and biomedical science, which have led to new drug discoveries, innovative imaging technologies, advances in targeted therapies and anticancer immunotherapies. But at the same time, more than 1.6 million people will be diagnosed with cancer this year, and the growing elderly population is expected to result in a large increase of cancer deaths. Smoking and obesity, two huge risk factors for a variety of cancers, continue to be a problem.

All of this is happening at a time when vital research dollars through the National Institutes of Health (NIH) are getting harder and harder to come by. An already shrinking NIH budget was decreased 5.1 percent this year due to sequestration, resulting in a loss of $1.6 billion. The National Cancer Institute lost $293 million. According to the AACR report, the NIH is now funding the lowest number of research projects since 2001.

“If we are to ultimately transform scientific discoveries into therapies that improve and save the lives of cancer patients, it is going to require an unwavering commitment of Congress and the administration to invest in our country’s remarkably productive cancer research and biomedical research enterprise led by the NIH and NCI,” the AACR report states.

Here at the University of Pittsburgh Cancer Insitute (UPCI), we rely heavily on federal support of our research. In fiscal year 2012, our investigators received more than $52 million from the NCI alone. The projects underway at UPCI include investigations into dietary factors to prevent cancer in preclinical models of prostate cancer, combinatorial immunotherapy for melanoma, non-steroidal anti-inflammatory agents in colon cancer prevention and work to advance our knowledge about biomarkers for the Merkel cell virus, one of the seven viruses known to cause cancer in humans.

In April, I attended the AACR annual meeting in Washington, D.C., where thousands came together in the “Rally for Medical Research” to highlight the need for more, not less, research funding. It is a rally cry that is vitally important, not only to those cancer patients already diagnosed but to those future generations as we strive to truly live in a world that is cancer free.

Nancy E. Davidson, M.D., is director of UPMC CancerCenter and the University of Pittsburgh Cancer Institute.