After the death of her mother from ovarian cancer at age 56, actress and human rights activist Angelina Jolie went public in 2013 with her decision to undergo a preventative double mastectomy after genetic testing revealed she carried thegene mutation that increased her risk of breast and ovarian cancer.
Though not everyone with a genetic predisposition of cancer opts to do what Jolie did — she also had her ovaries and fallopian tubes removed in 2015 — a daughter who carries a gene for hereditary cancer must reconcile both her mother’s cancer and what that diagnosis may mean for her own future. In Jolie’s case, her mother, aunt and grandmother died of cancer.
A recent report studied girls from 11 to 19 who had relatives with breast cancer. While the study, published in the August Journal of Clinical Oncology, found the girls to be as emotionally well-adjusted as their peers, it concluded the girls suffered a higher rate of breast-cancer related distress.
Dr. Angela Bradbury, an assistant professor of medicine at the University of Pennsylvania who authored the study, says that families can take precautions to help ease anxiety that girls may develop.
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“Girls who are more distressed have mothers who are more distressed. One of the best things a mom can do is take care of herself and make sure that her distress is being addressed. That is going to go a long way to help her daughter.”
Dr. Sara Rivero-Conil, a pediatric psychologist at Nicklaus Children’s Hospital, treats families with genetic cancer links. She says that understanding cancer risks at a young age can actually be beneficial.
“Girls that have a family history tend to take better care of themselves,” she says. “A little anxiety is actually not terrible. It’s when it impacts their daily functioning that we worry.”
Rivero-Conil suggests talking openly with children.
“Validate their fears,” she says. “Invite them to the doctor’s office and let them ask the doctor questions. We learn more about what they’re thinking by what they ask than what we’re telling them.”
Emma Ordoñez, 11, of Davie, knows how it feels to watch her mother go through cancer treatment. Emma’s mother, Gracy, was diagnosed with cancer last year. She underwent a double mastectomy and lymph node removal, followed by five months of chemotherapy and 33 rounds of radiation.
Emma remembers how she felt when her mother told her she needed an operation.
“When she first said ‘surgery’ I was in shock — nervous and afraid,” Emma says. “I didn’t know what was happening.”
Ordoñez, now 41, says she answered Emma’s questions with openness and honesty.
“It was the hardest thing I’ve ever had to do,” Ordoñez says. “She asked if it was cancer and if I was going to lose my hair.”
Emma says she feels good now that her mother’s treatment is complete. She says she doesn’t worry too much about developing cancer herself.
Emma’s 7-year-old sister Abigail, however, is too young to fully understand her mother’s illness or any increased risk for developing cancer herself.
“She knows that Mommy was sick and had to go the doctor and have surgery,” Ordoñez says. “She draws a lot of pink ribbons, but she really doesn’t understand how serious this is.”
Sometimes, it is the child herself who has been diagnosed with cancer. Such cases are frightening for the family, who may worry about immediate treatment as well as the long-term effects of chemicals and radiation.
Dr. Ziad Khatib, director of neuro-oncology at Nicklaus Children’s Hospital, says 2 to 5 percent of those who survive childhood cancer will develop a secondary cancer. Secondary cancers, which occur in a different part of the body later in life, are a particular risk for anyone who was treated with chemotherapy or radiation as a child.
“Specifically for Hodgkin’s lymphoma,” Khatib says. “In the past, they used to get much higher doses of chemo and radiation, so at least 20 percent of people treated for Hodgkin’s lymphoma would develop another cancer 10 or 20 years later.”
Khatib says doctors are cutting down on highly toxic chemotherapy drugs like nitrogen mustard, and radiation has been eliminated in those who respond well to chemotherapy.
“The new treatment for Hodgkin’s is much less toxic than it was 20 years ago, so we’re hoping that these changes are lowering the rates of secondary cancers,” he says.
Traditional radiation produces a “scatter effect,” Khatib says, resulting in radiation hitting unintended organs and increasing the risk of developing secondary cancers. Newer methods such as the precise beam of radiation used in proton therapy can target even small cancers without the scatter effect.
Gloryann Lopez, 30, lives in Sweetwater and is a former patient of Khatib’s. After experiencing blurred vision, Lopez was diagnosed at age 15 with a brain tumor. She says the tumor was surgically removed, only to return eight months later in the same location.
Lopez says she underwent 30 radiation sessions and six months of chemotherapy. The pressure from the tumor left Lopez paralyzed on her right side, unable to speak clearly, write or walk.
At age 29, she discovered a lump on a her breast. After another six months of chemotherapy, she underwent a mastectomy.
Confined to a wheelchair, Lopez draws heavily on her faith for strength, and prays that her cancer will not return a fourth time.
“My friends have moved on, got married and had kids,” she says. “I get emotional. Every day I want to get out of my house and I can’t. I feel really frustrated.”
Cases like Lopez’s are rare, and Khatib says it is important not to panic, because 95 percent of those treated with chemotherapy and radiation as children will not develop a secondary cancer. But in addition to regular check-ups, he says there are precautions that can help lower risks.
“There’s nothing proven, but in breast cancer, for example, we know that exercise, a low-fat diet, avoiding smoking and alcohol, and monthly self-exams help. Even obesity now is considered a risk factor for cancer that is as bad, or worse, than smoking.”