Breast cancer awareness month

Facing fear and risk

Facing fear and risk

October 01, 2002|by KATE COLEMAN

Toni Sollenberger was diagnosed with breast cancer last March. She had surgery - a lumpectomy - and radiation.

The last of her 33 treatments was on July 25, four days after her mother died from breast cancer.

Sollenberger, 44, is awaiting results of genetic testing. She wants to learn if she carries a mutation in the BRCA1 or BRCA2 genes. The mutation is associated with susceptibility to estrogen-related cancers.

The susceptibility can be inherited from the mother's or father's side of the family.

Sollenberger's sister Stephanie Nogle, 49, accompanied her sister to Baltimore for genetic counseling.

If Sollenberger's test results are positive, Nogle says, she, another sister and their brother plan to have the genetic testing despite the nearly $2,800 cost, which insurance probably won't cover.

"This is not a decision for me, it is a necessity," Nogle says.

Because she already has had breast cancer, Sollenberger's risk for a second bout with the disease is increased.


If she tests positive for the genetic mutation, Sollenberger would have both breasts removed.

"No doubt about it," she says. Nogle says she'd also have that surgery.

High risk

Prophylactic mastectomy is an option that results in at least a 90 percent reduction in breast cancer risk, says Barbara Bernhardt, a genetic counselor and associate professor of pediatrics and oncology at Johns Hopkins in Baltimore.

Other options include "chemo prevention," such as taking tamoxifen.

Bernhardt counsels people who are concerned about inherited cancer risk. Five to 10 percent of breast cancer cases are due to genetics, she says.

When a parent carries the genetic predisposition, each child has a 50 percent chance of inheriting it, according to information on the Web site of the National Cancer Institute,

But that doesn't mean that the child will inevitably get cancer. The percentage of individuals carrying the BRCA1 and BRCA2 gene mutation who will manifest the disease in the first 20 years of life is "essentially nil" for both men and women, according to the National Cancer Institute.

Estimates of those with genetic disposition for the cancer who will manifest the disease have varied from 36 percent to 85 percent, but a recent analysis reported in the Journal of the National Cancer Institute suggests that risk varies and may be less for some families.

In looking at a family's risk, ideally, the cancer survivor is tested first. If that test is positive for the genetic mutations, additional family members may be tested, Bernhardt says. Positive test results indicate some increased risk - for breast and for ovarian cancer as well. But there's a wide range of cancer risks, Bernhardt says.

When the genetic marker test result is negative, some women experience some relief, Bernhardt says. But there are women who are hard to reassure.

Taking action

"Knowledge eliminates fear," says Drea Barnhart, who has a distinct family history of breast cancer.

Her mother, Kathy Bachtell of Hagerstown, had a mastectomy at age 28 in 1977 and a prophylactic mastectomy of her other breast a few months later. Barnhart's maternal grandmother and her mother's sister died of breast cancer. A maternal great aunt and second cousin have survived the disease. All were diagnosed before menopause.

The younger the age of the person with breast cancer, the greater the risk that relatives will develop the disease, according to the National Cancer Institute Web site.

Barnhart, 28, joined the army 10 years ago and became an X-ray technician. She has since become a mammographer, now working in a digital mammography trial at the University of North Carolina in Chapel Hill.

Previously she worked for a Richmond, Va., company, training physicians and surgeons and performing stereotactic breast biopsies - the insertion of a needle into the breast to determine if a lump is cancerous - in a mobile unit in 16 cities in North and South Carolina.

Barnhart had her first breast biopsy at the age of 17. After subsequent biopsies revealed atypical cells and finally pre-cursors to cancer, Barnhart opted to have her breasts surgically removed at age 23.

Bachtell says she tried to talk her daughter out of the drastic surgery.

Barnhart thinks about the fact that she won't be able to breast feed the children she wants to have. But she made her decision with deliberation, talking to five different surgeons.

"Treat me for breast cancer in five years, or treat me prophylactically now," she recalls saying.

Barnhart did not have genetic testing. Her family and personal medical history were enough to convince her.

Genetic testing is a tool - among others - to help women determine their risk for breast cancer, says Patty Hanson, director of John R. Marsh Cancer Center at Robinwood Medical Center in Hagerstown.

A negative genetic test doesn't guarantee that you won't get breast cancer, she points out. "There are no guarantees in life."

The question remains, "What do you do with the information," she adds.

Women must use all the tools at their disposal - self exams, clinical exams, mammograms - to detect breast cancer.

"Every woman has to be aware every single moment of her life that she's at risk," says Bachtell.

"The bottom line is vigilance," Hanson says.

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