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home : features : people & places March 26, 2015

5/20/2013 8:16:00 AM
Breast cancer survivor becomes advocate for genetic testing
Charity Long of Prescott Valley displays a T-shirt that she plans to wear at the Relay for Life fundraiser for the American Cancer Society June 7 in Prescott. Long, who underwent a double mastectomy, recently learned that she tested positive for a gene linked to breast cancer.
Photo courtesy Ken Hedler
Charity Long of Prescott Valley displays a T-shirt that she plans to wear at the Relay for Life fundraiser for the American Cancer Society June 7 in Prescott. Long, who underwent a double mastectomy, recently learned that she tested positive for a gene linked to breast cancer.
Photo courtesy Ken Hedler

Ken Hedler
Special to the Tribune

Charity Long said she underwent a double mastectomy in December 2009 months after she detected a lump on her right breast.

Long, 34, said she suspected since the time of her diagnosis that she had a genetic connection because her grandmother and five of her grandmother's sisters died from breast cancer.

However, the Arizona Health Care Cost Containment System - the state's Medicaid program -repeatedly denied her requests for genetic testing coverage for her at the time, she said.

"Young women get ignored by the medical community," Long said. "You are too young. So many of us have heard that."

Finally covered by her husband's insurance company, she underwent a blood test in January at the Arizona Oncology office in Sedona. She supplied a letter from her mother, Robin Chisholm, who was diagnosed with breast cancer this past October.

The result came back to her two weeks ago, and Long learned that she tested positive to the BRCA1 gene mutation.

Long, a stay-at-home mom to four children ages 4 to 12, said the results came as no surprise to her.

"To be honest, I had a feeling that I had it," she said. "It was confirmation. Also because I have four children. I needed to know for their sake."

With a 50-50 chance of passing on the gene, Long said she wants her three daughters to undergo screening as early as age 20.

Genetic screening for breast cancer gained international media attention over the past week after actress Angelina Jolie revealed Tuesday that she carries a defective BRCA1 gene that put her at a high risk of developing breast and ovarian cancer. She underwent mastectomies in February, followed by reconstruction with implants in April.

Jolie's mother had breast cancer and died from ovarian cancer, and her maternal grandmother had ovarian cancer.

Jolie drew praise from Long for going public.

"I think it was a really good thing that she did that, or brave of her, knowing how private that she is," Long said.

Long's oncologist, Deborah Lindquist, recommends genetic testing for women younger than 35 if doctors diagnosed them with breast or ovarian cancer. She also recommends the testing for women, such as Long, who have a family history of breast cancer.

If a woman has genetic mutations, "we recommend bilateral (double) mastectomy and having their ovaries taken (out)," Lindquist said.

Lindquist and Nancy Ledoyen, clinical navigator for the BreastCare Center at the Prescott Valley campus of Yavapai Regional Medical Center, acknowledge the genetic link is rare.

Fewer than 10 percent of women who undergo the screening - a blood test or cotton swab taken on the inside of the cheek - test positive for the gene, Lindquist said. She has conducted genetic testing for breast and ovarian cancer for at least 10 years.

By contrast, YRMC began offering genetic testing six months ago and has tested only 10 people over the past six months, Ledoyen said. So far, no one has tested positive to the defective gene, and a man underwent testing Wednesday.

While the defective gene shows up rarely in the overall population, it is much higher for American Jews of Ashkenazi, or Eastern European, extraction, Ledoyen and Lindquist said. Ashkenazi Jews account for one out of every 40 cases of a genetic link for breast cancer, Ledoyen said.

The BreastCare center opened in October 2011, and saw about 4,500 patients during its first year of operation, according to Ledoyen. Of the total, 112 patients tested positive for breast cancer.

The BreastCare center opened too late for Long, who also underwent a hysterectomy and later breast reconstruction.

Long, a native of Visalia, Calif., who moved to Prescott Valley from the Phoenix area five years ago, said she is working with the regional manager of the Young Survival Coalition to form a support group in the quad-city area. She also plans to lead the Got Hope? team in the Relay for Life June 7 at Prescott High School to raise money for the American Cancer Society.

"I think it is important to me to share my voice with others and talk about how important it is, letting young women know you have to be proactive. You have to be your own advocate," she said.

For more information, call her at 442-6184.

The Associated Press contributed to this story.

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