New Breast Cancer Center Will Help Women Better Understand
After losing her mother to breast cancer as a child and then battling the disease herself, Khristi Rogers of Mount Pleasant, Miss., considered herself a savvy patient.
Diagnosed in 2002, she studied her treatment options and chose limited surgery combined with radiation and medication, rather than mastectomy.
She researched genetic testing.
She didn’t miss followup appointments.
“I knew I was at risk for a recurrence (of breast cancer). I was trying to keep up with everything,” said Rogers, 50, who is a mother of three and an Arlington High School science teacher.
So she was surprised when her sister’s gynecologist referred her sister for a breast MRI, although her sister had never been diagnosed with breast cancer.
“It was odd to me my doctor hadn’t mentioned” the screening test to her, Rogers said.
Advances in understanding breast cancer risk, as well as new tools for finding it early when the odds of a cure are greatest, have spawned more nuanced screening and treatment recommendations. They’ve also generated plenty of confusion.
“I think the general population is not well educated on breast cancer risk. Many people think they are at high risk who aren’t. But there are also many individuals who are clearly at high risk who have no idea that they are, and they aren’t doing anything,” said Dr. Russell Patterson III, a local breast surgeon.
Baptist Memorial Hospital for Women launches its response today, with the opening of a new breast risk management center. Located in suite 201 of the Baptist physician office building, 6215 Humphreys, the center staff will include a registered nurse who is a breast health
specialist. Women can call the center to schedule an appointment or be referred by a physician.
The goal is to make it easier for women and their primary- care physicians to determine who is at higher-than-average risk for breast cancer, to understand their options and to help scheduling recommended screenings or genetic testing, said Anita Vaughn, the hospital’s administrator and chief executive officer.
While genetic counseling and testing will be offered at the center, breast imaging such as mammography will be provided elsewhere. Women interested in pursuing cancer prevention strategies like surgery or medication will also be referred back to their physician.
While insurance companies usually cover mammograms and other screenings or genetic testing for women who meet their guidelines, Mandy Payne, the new center’s manager, said she was uncertain about insurance coverage of a woman’s initial visit to the center.
Vaughn said the center has been under consideration since 2001, but efforts accelerated in 2007 when the American Cancer Society issued new high-risk breast cancer screening guidelines.
That’s when the cancer society added MRI to the list of annually recommended screenings for the estimated 1.6 million U.S. women at the highest risk of developing the disease.
Experts have long urged women to get an annual mammogram to check for breast cancer. For most women, recommendations call for the screening X-ray to begin at age 40. But women like Rogers, whose mother died of breast cancer at age 31, often begin the process years earlier.
The trouble is that many women remain confused about their own risk or how to gauge it, said Pam Winter, a registered nurse and the new center’s breast health specialist.
“When I started in oncology, high risk didn’t enter into the picture much,” said Winter, whose career includes 15 years as an oncology nurse. That has changed thanks to better imaging, genetic screening and research that is better defining cancer risk.
Only a small fraction of the estimated 900,000 U.S. women with a BRCA1 or BRCA2 gene mutation, the gene changes most associated with breast cancer, have undergone genetic screening. Advocates hope a new federal law outlawing genetic discrimination in employment or insurance will spur interest in the test.
Rogers said it is important for patients to be well informed, but she said keeping up with changing recommendations is like having a part-time job.
Even then, she said she has found it is not always possible.
For example, until last year she didn’t realize the possible benefit of being tested for BRCA1 and BRCA2 gene mutations. Shortly after she was diagnosed, Rogers considered and rejected being checked for the genes. Then last year, her doctor explained that if testing found she had inherited the changes, she would be followed more closely and insurance would likely pay for MRI screening.
Until then, Rogers said she didn’t realize more intensive monitoring was possible.
The conversation set in motion testing and screening that last year led to a second cancer diagnosis. In September, she had a successful double mastectomy.
Baptist officials said they hope the new program will make it easier for women like Rogers to keep up.
Dr. Marisa Weiss said there is a need for high-risk breast clinics staffed with specially trained physicians and other staff, the latest technology and enough patients to develop a real expertise and attract clinical research.
“I don’t think we can depend on primary-care physicians to be on top of all that literature” about identification and management of high-risk women, she said. Weiss is a breast cancer oncologist in the Philadelphia area. She is also the president and founder of Breastcancer.org, a nonprofit, online breast cancer information source.
The new Baptist program is the second in Tennessee. Vanderbilt-Ingram Cancer Center opened a high-risk breast cancer clinic several years ago.
Dr. Jasgit Sachdev, a breast specialist and University of Tennessee Cancer Institute assistant professor, said a growing number of primary-care physicians are using online tools to identify high-risk women. But she said many need help interpreting the results and a patient’s options.
Even genetic testing doesn’t guarantee clear answers, Sachdev said. “A lot of times you’ll get a (genetic) test that comes back inconclusive,” she explained. That sometimes means there is a genetic component to a person’s cancer, but the responsible gene hasn’t been identified. Like Baptist, the UT institute staff includes certified genetic counselors.
Women with questions, but without access to specialists, sometimes wind up talking to Sue Friedman or a trained volunteer answering the toll-free hotline operated by FORCE, the Tampa-based organization Friedman directs.
FORCE — Facing Our Risk of Cancer Empowered — was established in 1999 to provide information and advocacy regarding hereditary breast, ovarian and other cancers.
Inherited mutations, or changes in the genes that serve as the blueprint for life, are believed responsible for 5 to 10 percent of breast cancers. The most common, mutations in the BRCA1 and BRCA2 genes, are associated with a 40 to 80 percent risk of developing breast cancer and a 50 percent risk of ovarian cancer. The mutations are also associated with an increased risk of pancreatic, prostate and even colon cancer.
In comparison, the average American woman has an 8 percent lifetime breast cancer risk.
Sachdev said there are other high-risk groups. Breast cancer survivors are two to five times more likely to be diagnosed again. Those with a family history of the disease, even without the BRCA mutations, are two to four times more likely to be diagnosed.
Friedman urges callers to find someone with certification or expertise in genetic counseling.
For those who live far from specialists, she refers women to Informed Medical Decisions, a California-based company that provides telephone genetic counseling and works with local physicians to arrange the tests.
“It is like any new specialty; we are seeing a lot of non-experts marketing the test,” Friedman said. She is a breast cancer survivor who learned 12 years ago that she inherited a BRCA2 mutation.
But she didn’t learn genetic testing was available or that she carried the gene until roughly two years after her first diagnosis. She said she likely would have made different treatment decisions if she had a better understanding of her risk.
Friedman said hotline callers are often confused about the possible benefits of testing, the meaning of test results or who in the family would be the best person to begin the counseling and testing process.
“Even a woman with both breasts removed due to breast cancer, if they carry the mutation, they are considered at high risk for ovarian cancer, too,” she said. “I can’t think of anything much more devastating than to beat breast cancer, only to be diagnosed 20 years later with ovarian cancer.”
Calculating Breast Cancer Risk
An American woman’s risk of being diagnosed with breast cancer varies widely, depending on factors like age, family history or even her country of origin. Experts say new screening and prevention options make it increasingly important for women to understand their own risk.
Factors that influence a woman’s breast cancer odds:
1. Her age (risk increases with age);
2. Her age when she had her first menstrual period (menstruation before age 12 or after age 55 confers a slightly higher risk);
3. Her age at the time of the first live birth of a child (women who are childless or who were age 30 or older when their first child was born are at slightly higher risk);
4. Close relatives, including mother, sisters and daughters, with a breast cancer diagnosis;
5. A personal history of breast cancer or a diagnosis of ductal carcinoma in situ (DCIS) or lobular carcinoma in situ (LCIS);
6. One or more breast biopsies;
7. A biopsy that yielded a diagnosis of atypical hyperplasia;
8. Her race or ethnicity;
9. Previous radiation therapy to the chest as treatment of Hodgkin lymphoma;
10. Recent migration from a region of the world with low breast cancer rates;
11. Mutations to either the BRCA1 or BRCA2 genes.
Source: the National Cancer Institute and the American Cancer Society
For more information or to calculate personal risk, go to:
National Cancer Institute’s Web site, cancer.gov/bcrisktool
American Cancer Society’s Web site, cancer.org, search for breast cancer;
FORCE: Facing Our Risk of Cancer Empowered, facingourrisk.org or call (866) 824-RISK (7475).
Breastcancer.org