Ovarian cancer survivor, daughter promote genetic testing so others can ‘live to laugh’ longer.
A cancer diagnosis can bring family life to a halt, bringing feelings of sorrow along with it.
Genetic testing facts:* Genetic testing can identify gene mutations that may indicate increased risk of some types of cancers. * The procedure, a blood test, may be recommended for cancer patients and family members when there is a history of certain types of cancers, including breast cancer.* To find out if you would benefit from genetic testing, talk to your physician. Patients who may benefit from testing are referred to genetic counselors, who assist with the testing process, help interpret the results and determine a course of action.* There isn’t a genetic counselor on staff at Rowan Regional Medical Center, but a spokesperson for Novant Health said both Presbyterian Hospital and Forsyth Medical Center employ genetic counselors.Genetic counselors are also on staff at CMC-NorthEast in Concord and at CMC’s main campus in Charlotte, according to a Carolinas HealthCare spokesperson.
Carolyn Lane and her family have had their struggles since she was diagnosed with Stage 3 ovarian cancer in March of 2010.
But she still loves to laugh, says daughter Brandi Barnhardt.
“You know, the Lord’s in control … The devil’s not going to win,” Barnhardt says as she and her mother sit at the kitchen table in the family home.
“The devil doesn’t like to be laughed at, and that’s why we call her ‘the laughing lady,’” Barnhardt said.
Part of the reason that mother and daughter can laugh and smile is that Lane’s cancer journey led them to answers.
Today, they’re telling whoever they can about genetic testing — a blood test that can, in some cases, help predict a person’s future risk of cancer.
The results of her mother’s test led Barnhardt to get tested herself.
Those test results then led to difficult and life-changing choices … and a drastic reduction in Barnhardt’s cancer risk.
Which means more time to travel, and smile, they say.
“The devil’s going to turn his head away,” Barnhardt says.
Her mom smiles at that, as if she’s laughing inside.
“I was diagnosed March of 2010 with ovarian cancer,” Lane said.
“The bad part about it is, I knew what I had before they told me.”
Her mother, the late Myrtle Lowman, was diagnosed with primary peritoneal cancer in 1994, Lane said.
“I had her same symptoms … and I could also feel the tumor in my left side,” Lane said.
On March 31, 2010, Lane said, doctors at Presbyterian Hospital in Charlotte removed two large tumors. A few weeks later, she began chemotherapy.
But, although she’s had periods of remission, Lane said the cancer has spread.
At the end of April, Lane said, she’ll travel to Johns Hopkins Hospital in Maryland, in hopes of joining a study that can help her.
Lane didn’t want to talk about her prognosis.
“She hasn’t even told me,” Barnhardt said.
But Lane has reasons to keep smiling, because of what happened after her diagnosis.
She thought of her mother, whose symptoms had been similar to those she suffered 16 years later.
The symptoms alone aren’t as important as the fact that ovarian cancer and peritoneal cancer, as well as breast cancer, have a genetic link in common.
Two genetic mutations, known as breast cancer susceptibility genes, have been identified. They’re known as BRCA 1 and BRCA 2.
In the current issue of Cure, a magazine devoted to cancer research, author Kathy LaTour writes that, while 12 percent of American women will develop breast cancer in their lifetimes, 60 percent of women who inherit the BRCA 1 or BRCA 2 genetic mutation will develop breast cancer.
LaTour writes that those women also have a higher risk of developing ovarian cancer, and BRCA 1 may increase the risk of developing pancreatic cancer and melanoma as well.
Because of their family history of cancer, it was suggested that Lane should have a genetic test done to find out if she was carrying such a gene.
Since BRCA 1 and 2 don’t skip generations, Lane said, it was important not just for her, but for her children and grandchildren.
They remembered Lowman, too, as they sat in the kitchen where Barnhardt’s grandmother used to cook.
“Basically, we lived with her when Mom and Dad were at work,” Barnhardt said, remembering the times the kids spent there.
“She was a strong woman, in her life and in her religion,” Lane said.
As they sit around the kitchen table today, they recall Lowman’s pound cake that won a blue ribbon at the Rowan County Fair, and how she kept on working even after her diagnosis.
Getting tested was the obvious choice.
How testing works
The genetic counselor who worked with Lane, Christen Csuy, has 10 years of experience as a genetic counselor, most of them working for Novant Health, owner of Presbyterian Hospital.
“Genetic counselors work within a variety of settings,” Csuy said in an e-mail interview.
“With cancer genetic counseling, we typically see patients prior to pursuing genetic testing,” Csuy said. “We review their family history … and discuss the benefits and limitations to pursuing genetic testing.”
Part of those discussions include how likely the tests will be to identify a genetic component to the family’s cancer history.
Csuy said genetic counselors help patients interpret results to determine cancer risks, and can also discuss options regarding cancer screening and surgical management.
“We also can help determine the appropriate family members that may need to consider genetic testing if the patient does end up having a genetic mutation,” Csuy said.
However, not everyone with a personal or family history of cancer needs to be tested, Csuy said.
She said genetic testing is often considered for patents who developed cancer at a young age — typically, under age 50 — or for families where multiple members have developed the same type of cancer.
Genetic testing is also considered for those with relatively rare cancers, such as male breast cancer.
There are over 200 cancer syndromes that genetic testing can be performed for, Csuy said.
However, “There is no one genetic mutation that ‘predicts’ all types of cancer,” she said.
Still, she said, a genetic counselor who knows a patient’s history can study the test results to find possible correlations.
The genetic test is a simple blood test, and within a relatively short time Lane’s results came in:
She tested positive for BRCA 2.
The results meant Barnhardt had a 50-50 chance of carrying the gene herself.
Barnhardt, now 35, had just remarried, and she and her husband wanted to have a child.
But, she said, she put off the test until after her son was born. “I didn’t want to have that on my mind while I was pregnant,” she said.
At the same time, as her mother’s treatment progressed, Barnhardt decided what she would do if she turned out to carry BRCA 2.
“I was going to go ahead and have surgeries,” she said.
That is, a preventative double mastectomy to avoid breast cancer, and a hysterectomy to avoid ovarian cancer.
At the time, Barnhardt said, “the insurance wouldn’t take care of it.”
But when her genetic test also came back positive for BRCA 2, Barnhardt said, the insurance company was willing to pay for the surgeries, as well as reconstructive surgery.
According to Csuy, patients with BRCA 1 or BRCA 2 have a greater chance of developing breast cancer and ovarian cancer. The genetic mutation and her family history meant Barnhardt had a much higher risk of developing cancer herself.
Today, after surgery, Barnhardt said that her cancer risk is at or below that of the general population.
But that doesn’t mean the surgery was easy.
Barnhardt said she had hoped to be able to have a daughter one day.
“I didn’t want to put her through this,” Barnhardt said, wiping away a tear. “That’s the hardest part, for me, is knowing I can’t have any more children. But it’s okay.”
“I’ve had people say to me, ‘Why did you want to do this?’” Barnhardt went on. “I said, ‘I want to live.’ If God had not given people the ability to do this, the science to come up with this, I wouldn’t be able to do it.”
‘Live to laugh’
Genetic testing won’t completely predict one’s cancer risk, and Lane and Barnhardt said it comes with stresses of its own.
Lane said she knows at least two cancer survivors whose family members were unable to get genetic testing, because the insurance companies wouldn’t pay.
Csuy cautions that “there are no cancers that can be ‘predicted’ more reliably with genetic testing.”
“Some cancers have a higher likelihood of being caused by genetic mutations than others,” Csuy said.
And, as published reports make clear, there are many other factors — environment, exposure to radiation and chemicals — that can increase one’s cancer risk.
Still, Lane and Barnhardt see enough benefits to genetic counseling that spreading the word about testing is now their mission.
For one thing, Lane said, other women — at least one she knows personally — have made the decision to have preventative surgery after learning they have a genetic mutation.
“This is our soapbox that we get on,” Lane said. “Because when we hear about breast cancer, someone getting it, we ask, ‘Have you had genetic testing?’”
“It’s saved my life to be here with my kids,” Barnhardt said.
“It will save your life, if not your kids, your grandkids, your great-grandkids. It’s to help prevent this from happening.”
Lane said that, when she was chosen to appear in Presbyterian’s 2011 calendar of cancer survivors, she included this motto:
“Live, love, and most of all laugh,” she read.
For her and her daughter, genetic testing has made it likely that there will be many more days of laughter together for Barnhardt and the ones she loves.
Contact Hugh Fisher via the editor’s desk at 704-794-4244.