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Interest in genetic testing, elective mastectomies on the rise

Kara Gourley and her son Chase, 4, play around with a pumpkin they just carved together outside their Lawrence home. Gourley, 37, a mother of three, had genetic testing and a double mastectomy done a few years ago because of a family history of cancer.

Kara Gourley and her son Chase, 4, play around with a pumpkin they just carved together outside their Lawrence home. Gourley, 37, a mother of three, had genetic testing and a double mastectomy done a few years ago because of a family history of cancer.

October 8, 2013

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Kara Gourley's world has been turned upside down by cancer. It took the life of her aunt. Then her mother. It almost took hers.

The Lawrence executive assistant was only 30 when in 2006 she found a lump in one of her breasts. Several years earlier, after her grandmother was diagnosed with breast cancer, Gourley discovered that she had a gene mutation (BRCA1) that can cause the disease. So, after discovering the mass, Gourley got the news she long feared was coming: She had cancer.

She didn't have long to catch her breath before she had to make a decision: She could undergo a lumpectomy with the probability that the cancer would return, or she could have both breasts removed in the hopes it could cut her cancer risk to that of the average woman. The second option would also preserve her ability to have another child, which her cancer treatment would have put in jeopardy.

Kara Gourley and her son Chase, 4, play around with a pumpkin they just carved together outside their Lawrence home. Gourley, 37, a mother of three, had genetic testing and a double mastectomy done a few years ago because of a family history of cancer.

Kara Gourley and her son Chase, 4, play around with a pumpkin they just carved together outside their Lawrence home. Gourley, 37, a mother of three, had genetic testing and a double mastectomy done a few years ago because of a family history of cancer.

Jennifer Berquist, who works in the Kansas University athletics department, underwent a double mastectomy last year after being diagnosed with breast cancer.

Jennifer Berquist, who works in the Kansas University athletics department, underwent a double mastectomy last year after being diagnosed with breast cancer.

Gourley chose to do a bilateral mastectomy. She later had her breasts reconstructed.

Seven years later, Gourley has no regrets. She had another child, a son, and is cancer-free.

"My friends can't tell I had a mastectomy or reconstruction," Gourley said. "And you don't have the constant fear of, 'Oh, is the cancer going to come back?'"

Gourley, 37, also had her ovaries removed in 2007 — the BRCA1 and BRCA2 mutations also put carriers at a high risk of ovarian cancer — and underwent a full hysterectomy last November. She does worry about passing the gene mutation on to her children (boys can also carry the BRCA1 mutation).

"For a while, I've had guilt," she said. "But the thought for us, from the get-go, was that this is what our family has. Some people have heart disease in their family; some have diabetes."

She has also become an advocate for women affected by breast cancer, writing articles and giving speeches about her experience. Soon, she will help dedicate a room at the Lawrence Memorial Hospital Oncology Center in honor of her mother, Anita Vail, who lost her battle with cancer last year at age 56. Gourley is open to talking to women considering a mastectomy.

"Most women think their breasts define them — that's not the case," she said. "I can still go out and wear a cute dress or a cute top. No one's going to know unless I tell them."

More women undergoing procedure, testing

Gourley is one of an growing number of women choosing to undergo bilateral mastectomies after testing positive for a BRCA gene mutation, which is responsible for about 10 percent of breast cancer cases in women. Locally, the Lawrence Memorial Hospital Oncology Center has recently been getting an increasing number of calls from women inquiring about genetic testing.

"We are seeing more testing because of the guidelines changing" — it's now recommended that all women diagnosed with breast cancer under the age of 50 be tested for the mutation — "and also because of more public awareness," said Sherrie Soule, an oncologist at Lawrence Memorial Hospital.

Patients are generally tested for the mutation if they have a strong family history of breast or ovarian cancer, particularly if they or relatives developed the disease at a young age. Women with the gene alteration have, over the course of their lives, about an 70-80 percent chance of getting breast cancer and 30-40 percent possibility of being diagnosed with ovarian cancer.

To reduce that risk, a woman who tests positive for a BRCA mutation can choose between a prophylactic mastectomy and ovariectomy or get regular, aggressive screenings for breast and ovarian cancer. Removal of the breast involves either a skin-sparing mastectomy, which leaves the outer layer of the breast intact, or a simple mastectomy, which does not, said Paul Kolkman, a surgeon at Lawrence Memorial Hospital. The type of surgery also affects the type of reconstruction that is done: whether it uses tissue from the woman's own breast, another part of her body or a donor.

No regrets

More than a year after undergoing a double mastectomy, Jennifer Berquist said it was the only decision that made sense. The Lawrence resident wanted to do whatever it took to prevent her cancer from returning.

"I didn't get emotional about it. I had to do it," said Berquist, 41, who works in the Kansas University athletics department. "I had to get the cancer out of me."

After finding a lump in her breast the night the KU men's basketball team played USC in December 2011, Berquist went to a doctor to have it examined. A few days later, she was diagnosed with breast cancer

Once she found out, the mother of two went into organizational mode.

"I'm very much a planner," she said, "so when you're thrown a curveball like this, I think, what is this and what do I do about it?"

She found out her cancer was estrogen-related, so she chose to have both of her breasts, and later her ovaries, removed. Last year, she had her breasts reconstructed, using saline and tissue expanders and skin from her lower abdomen. The most pain she endured during all her procedures came after she contracted strep throat. The ease of the operations is one reason why she has become outspoken in favor of elective breast removal.

"If I carried the gene, I would have done it too," she said. "Anything I can do to not have cancer, I'd do in a heartbeat."

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