October 08, 2014
By Linda Friedel, KC Nursing News
HCA Midwest Health System and Sarah Cannon Cancer Network sponsored a private screening and panel discussion on Sept. 9 at AMC Theater Town Center 20 in Leawood, Kan.
The screening of “Decoding Annie Parker” served as a community outreach program for breast cancer awareness and the recognition of the newly established Sarah Cannon Cancer Network service line in HCA’s area hospitals, said Christine Hamele, spokesperson for HCA Midwest Health System. The service line has roots in a foundation created by an American country comedian.
“Sarah Cannon Cancer Network is a nationally known cancer organization,” Hamele said. “This was Minnie Pearl’s real name. She started a cancer foundation.”
HCA Midwest Health facilities in the Kansas City area join HCA affiliate hospitals in Denver, Nashville, Dallas and Ft. Worth to establish the Sarah Cannon Cancer service line. The new cancer service line means more clinical research, clinical trials and a broader range of cancer care services, Hamele said. It will improve survivorship, she said.
“It is a fully integrated product from physicians to treatments,” she said. “It gives us more access for clinical trials in our local community. We’re getting patients access earlier to clinical trials. We’ve got the researchers.”
Approximately 75 community members, physicians, nurses, nurse navigators, cancer patients and geneticists attended the September screening of “Decoding Annie Parker,” Hamele said. The film follows cancer survivor Annie Parker and geneticist Mary-Claire King, who discovered the BRCA1 inherited breast cancer gene. A patient from Menorah Medical Center gave a presentation on preventative surgery, and panel of breast cancer experts answered questions following the film. Hamele said “Decoding Annie Parker” is a powerful story of the discovery of the BRCA1 gene. She hoped viewers would leave inspired.
“I would love people to take personal care of their own breast health or fight for woman that matter to them,” she said. “It’s an awareness and inspiration.”
Before the film started rolling, Hannelore Brown, a patient at Menorah Medical Center, spoke to audience members on the power of genetic counseling. Like Annie Parker in the film, Brown tested positive for the BRCA breast cancer gene. She has the BRCA2 gene and Parker has BRCA1. Brown encouraged audience members to pursue genetic testing if they have a family history of breast cancer and to take proactive steps if the results test positive. Brown had genetic testing done after her mother tested positive for BRCA2. Her mother also was diagnosed and treated for breast and ovarian cancer. With her family history and positive test results Brown, 50, decided on a radical hysterectomy and bilateral radical mastectomy. She said she knew it was a good decision when the hysterectomy revealed atypia cells in her fallopian tubes.
“It was a good thing we did this,” she said to the audience. “In our family we have a saying — fight your DNA. We have the ability to do genetic testing.”
Gene Mallin of Overland Park attended the screening and said she was impressed with Brown’s decision.
“I have to give her credit for being courageous,” Mallin said. “She pursued it.”
Mallin said she would have done the same thing under the circumstances in order spend as much time with her children and grandchildren. Mallin said she had a few of her own scares recently. A three-dimensional mammogram revealed an area on her right breast that looked suspicious. A biopsy determined there was nothing cancerous, she said. She had a second mammogram on her left breast for further evaluation, again resulting in a healthy outcome.
“I have been lucky,” Mallin said.
Mallin said she attended the screening of “Decoding Annie Parker” because she thought the film would be interesting and worthwhile. The story followed cancer survivor Parker’s diagnosis and treatment in the 1960s and 1970s. Parker believed there was a family link to her breast cancer while geneticist King was at work proving it through scientific research. King identified the first breast cancer gene, BRCA1. Mallin said the film delivered a message of hope.
“I think if you have a family history of it (breast cancer) you should have the testing,” she said.
After the screening of “Decoding Annie Parker” Brown spoke to Kansas City Nursing News further about BRCA2. Brown said her mother was diagnosed with breast cancer in 2009 and with ovarian cancer last year. After She tested positive for BRCA2, Brown, 50, and her sister, 48, were tested. Her sister tested negative, but Brown tested differently.
“I got tested. Mine came up positive,” Brown said.
Brown received genetic counseling at Menorah Medical Center in February, then had further evaluations. Following genetic testing, she had a mammogram, breast biopsy, an examination for melanoma, a 3-D ultrasound of her breasts and a vaginal ultrasound. In May she had a radical hysterectomy to remove her ovaries, fallopian tubes and uterus. In June she had a bilateral radical mastectomy, then breast reconstruction. Brown will have one more procedure this week to complete her breast reconstruction. Her health insurance covered everything from genetic testing to reconstructive surgery, she said. With the BRCA2 gene and her family history of breast cancer, she said there was a 50 percent chance of having breast cancer and an 85 percent chance of getting ovarian cancer. Brown said in light of her mother’s medical history she was not surprised at the results of her test. Still, it was daunting.
“It’s a big hammer,” Brown said. “Even though you know it’s not a surprise it hits you hard. “I don’t like those odds. I don’t think anybody likes those odds.”
Once Brown discovered she had the BRCA2 gene, she started making decisions about her health. Her husband was her biggest support, she said. He told her he wanted her alive with fewer parts than to be buried with an intact body, she said.
“I just didn’t want this to be the Sword of Damocles hanging over my head,” she said. “It’s the big elephant in the room. You never know what could happen. The only way you know if you have beaten it is to take preventative measures.”
Brown says she took preemptive strikes to prevent cancer. Health-care professionals refer to it as prophylactic surgery. Brown says she healed from her surgeries and feels at peace with her decision. Brown laughs easily and says she never lost her sense of humor. She had support from her family and team of health-care providers, she said.
“I am thrilled that I did it,” Brown said. “All the physicians and oncology and are tickled pink that I wouldn’t sit around and wait.”
Brown says she and her husband had a discussion with their four children about DNA prior to her decision to have surgery. Breast cancer experts recommend that their daughters and son get genetically tested by the age of 25, she said. Whether her daughters test positive or negative for BRCA2, they should have the same radical surgeries by the time they are 40 years old, she said specialists recommend. Brown said it was important to model to her children, ages 13 to 21, how to meet adversity with resolve and a sense of humor. Life is too short to be sad, she said.
“They are smart kids,” Brown said. “They completely understand the ramifications of an X-dominant disease. They understand the way to beat the odds is to do the preemptive surgery. This is what you do. This is how you take care of the situation.”
Brown’s background in biology and genetics inspired her to conduct her own genetic research. During her testing and evaluations, breast cancer experts repeatedly asked who was Jewish in her family heritage. BRCA2 is found more in Jewish women than any other group of cultures, she said. Brown sent a DNA sample to a research study to find out. The results determined her as 100-percent northern European ancestry with no Jewish ancestors. She further researched the sequence and found that the BRCA2 gene comes from the Danish sequence in her family.
“I am only 6.4 Danish,” she said. “That gene came out of only 6.4 percent of me. It is a very minute percentage. It’s a fascinating puzzle.”
Lenna Levitch, MS, CGC, director of the genetics program for Sarah Cannon HCA Midwest Health, was a panelist during the question and answer period after the screening of “Decoding Annie Brown.” She was also Brown’s genetics counselor. Levitch said that King came out with a statement in September saying that all women should be tested for the BRCA1 and BRCA2 gene. Levitch, who is familiar with King’s studies says she was surprised with King’s new recommendation.
“It’s a big paradigm shift,” Levitch said. “She’s certainly on the forefront of all of this.”