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Published - Wednesday, September 03, 2008

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‘She had cancer, and I didn’t’: Family history of disease leads to genetic testing


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Carmen Peters knows genetic testing saved her life.

Peters suspected a family history of breast cancer. Her mother had breast cancer twice, and her aunt died of breast cancer at age 42. A cousin also was diagnosed with breast cancer.
Sisters Carmen Peters, left, and Pam Nehring. (Contributed photo)

The cousin had genetic testing done and was positive for the BRCA1 breast cancer gene mutation. That prompted Peters’ mom to undergo genetic testing. She, too, tested positive for the gene abnormality.

Other family members then were tested. Peters has six sisters, and some tested negative, some positive. Genetic testing established that the family has hereditary breast and ovarian cancer syndrome.

Peters, 44, of Chaseburg, and her 52-year-old sister, Pam Nehring of Blair, decided to have their breasts removed because of the high risk for breast cancer.

Before surgery, both needed more testing, including new MRI technology to make sure they didn’t have cysts or tumors. Peters never expected her MRI to show a small tumor in her left breast.

“I wasn’t surprised by the gene (mutation), but I was surprised I had breast cancer,” Peters said. “I expected to have the surgery to prevent breast cancer.”

Peters said she had annual mammograms for the past 15 years or so, but her last mammogram showed nothing. She was diagnosed in February and caught the cancer early. She had four rounds of chemotherapy before she had her breasts removed.

“I told my mother she saved my life by having that test done,” Peters said.

Nehring had no cysts or tumors in her breasts and was the first to have her breasts removed.

“Carmen called me at work and asked if I was sitting down,” Nehring said. “She said they found a spot — cancer. I told her she could have my surgery date if she needed it.

“It was very hard for me to understand,” she said. “She had cancer, and I didn’t.”

Peters and Nehring said they decided that removal of their breasts was the only healthy option. “Why wait for breast cancer to come: Let’s be rid of it,” Peters said. “It also was for our peace of mind. It’s just something we needed to do.”

Peters, Nehring and family members plan to participate in Gundersen Lutheran’s Steppin’ Out in Pink walk for breast cancer research and awareness on Saturday.

“The walk is our way to help other women and families, to thank Gundersen Lutheran for the wonderful care and raise money for research,” Peters said. “Our family has benefitted from genetic research.”

Peters, Nehring and her family sought advice from Peter Levonian, a Gundersen Lutheran genetic counselor.

“I think this is the most striking of families we’ve seen because of the large number of females in the family,” Levonian said.

Levonian said Peters and Nehring had up to an 80 percent lifetime risk of developing breast cancer due to their gene mutations. They also had a 50 percent chance of inheriting one of the two mutated breast cancer genes, BRCA1 and BRCA2.

Men and women alike have the two genes. The function of these genes is to keep breast cells growing normally and to prevent cancer cell growth.

But when these genes contain abnormalities, or mutations, they are associated with an increased breast cancer risk.

Levonian said the two gene mutations account for only about 5 percent of all breast cancers. Women diagnosed with breast cancer who have an abnormal BRCA1 or BRCA2 gene often have a family history of breast cancer, ovarian cancer, or both.

“Although it’s only 5 percent, if a family has a history of ovarian cancer and early onset breast cancer, then family history has a major impact,” Levonian said.

Levonian suggests that if women have a family history of ovarian cancer or being diagnosed with breast cancer before the age of 50, they should consider genetic testing. He said he can conduct a risk assessment for the family.

Before genetic testing was available, Levonian said, some women with a strong family history chose to remove their breasts without knowing their actual risk.

“Half of those women were not at high risk, but many opted for bilateral mastectomy,” Levonian said. “Many of those surgeries done were unnecessary, but we had nothing better to offer.

“Some of these women still opt for surgery, but others just take a screening approach and accept they have a higher than average risk and watch it more carefully,” he said.

Peters has two daughters and two sons, and Nehring has a son and a daughter. Their children have a 50 percent chance of carrying the gene mutation.

Levonian suggests testing siblings at the age of 18 to 20, when it could make a difference in their medical care.

“It’s a huge concern that my children have a 50 percent chance of being a carrier,” Nehring said. “They’re both married with no children. I hope they will be tested.”

Nehring said genetic testing has prompted her to do more to help other women.

“I talk to my co-workers about mammograms, and I’m always telling them to be pro-active about their health,” she said.

Steppin’ Out organizers think pink

By TERRY RINDFLEISCH | trindfleisch@lacrossetribune.com

Gundersen Lutheran officials are expecting this year’s Steppin’ Out in Pink walk for breast cancer research and awareness to be the largest in three years.

More than 3,000 walkers already have registered, and officials expect a couple hundred more will register at the walk Saturday. Last year, the walk drew 3,180, with 300 to 400 walk-ups.

“This should be the most successful year,” said Debbie Kroner, coordinator for Steppin’ Out in Pink.

In 2006, 2,980 people participated in the walk. More than 120 survivors have walked the past two years.

Kroner said $420,000 was raised the first two years. This year’s goal is $240,000.

The walk is held every year with the goal to raise $1 million to endow the Norman L. Gillette Jr. Cancer Research Fellowship, which was established at Gundersen Lutheran Medical Foundation by the families of Norman L. Gillette Jr., and Donald and Norma J. Vinger.

The families will give another $1 million when Gundersen Lutheran meets its goal to support full-time research at the Norma J. Vinger Center for Breast Care.

At this year’s walk, Gundersen Lutheran’s new digital mobile mammography unit will be unveiled. Gayle Jago, clinical manager of program development at Norma J. Vinger Center for Breast Care, said the 40-foot, self-contained mammography coach will travel to sites in 19 counties in Iowa, Minnesota and Wisconsin.

Jago said the mobile unit will improve access to breast cancer screening services.

The focus of this service is the uninsured and underinsured women and for working women who have not seen a provider in more than five years, Jago said.

“We have discovered high rates of nonadherence to breast cancer screening recommendations among female laborers and mothers who typically are unable to take time away from work or children for preventive health care services,” Jago said.

If You Go

WHAT: Gundersen Lutheran’s Steppin’ Out in Pink walk for breast cancer research and awareness.

WHEN: 9 a.m. to 1 p.m., Saturday

WHERE: The walk kicks off at 9 a.m. on the Gundersen Lutheran walking trail in La Crosse.

TO REGISTER: You can register the day of the event. For more information, go to gundluth.org/steppinout.

COST: $25
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je wrote on Sep 3, 2008 9:23 PM:

" I have a history of breast cancer. I have had mammograms at Fransiscan-Skemp & Gundersen-Lutheran. There is always a "shadow" or "abnormality" that needs re-checking. Gundersen-Lutheran (where I had insurance 1 year) had me re-checked the next day. Fanciscan-Skemp (my provider for 16 years) I have to wait at least 3 days to be re-checked. When F-S called for this "re-schedule" one year, I told the person I had a re-check at G-L in 1 day,& she told me "Impossible. I have insurance coverage at G-L & I have to wait all the time" This re-check is agonizing to someone with a history & the way I am treated at Franciscan-Skemp causes me a great deal of anxiety. The people doing my mammograms are very compassionate, but the people on the phone are not. I wish I could afford to go to Gundersen-Lutheran. "


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