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Maine Woman Reflects on Preventive Mastectomy Decision
05/14/2013   Reported By: Patty B. Wight

In an op-ed in the New York Times today, actress Angelina Jolie revealed she had a preventive mastectomy earlier this year. Jolie had the procedure after discovering she carries a gene that dramatically increases her risk of developing breast cancer, and says she wants women to be aware of their options in the face of cancer. Preventive mastectomy is not a recommendation that physicians give lightly. But as Patty Wight reports, for some women, it's a welcome procedure.

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The first tumor came when Birdie Newman Katz was just 13 years old. It was in her breast, and luckily, it was benign. But it was the first of many that would reoccur about every other year for the next 20 years. Every time, they were removed, biopsied, and deemed harmless.

But one day a doctor ordered more extensive testing, and Katz discovered the tumors growing in her breasts were a rare type that could one day turn malignant and grow a very aggressive kind of cancer.

"So I spent the next three years trying to figure out what I wanted to do," she says.

This was the late 80s. Katz's doctors said the best approach was aggressive check-ups - four times a year. Another option was to remove her breasts.

"All I cared about was I had these time bombs - I felt I like they were time bombs on me," she says. "I had a wonderful husband and two great kids that I wanted to be there for the next 40 or 50 years, so I decided to do the surgery."

Twenty years ago, Katz's personal history made her a candidate for a double mastectomy. These days, Dr. Lisa Rutstein, director of surgical oncology at Maine Medical Center in Portland, says doctors rely on genetic testing to determine whether a preventative mastectomy is warranted.

Rutstein says she's worried that after hearing about Angelina Jolie's mastectomy, other women with a family history of breast cancer will assume they should get one too, "because the vast majority of breast cancer is sporadic," she says. "We know that up to 80 percent of breast cancer cases just happen. And they're sporadic, and that they happen in women that don't necessarily happen to have a family history."

Rutstein says there are probably fewer than 50 preventative mastectomies performed in Maine per year. Because the women who get them know they are at an increased risk - sometimes as much as 80 percent, they usually welcome the procedure.

Birdie Katz says her only fear was how she would respond emotionally to the procedure afterwards. To prepare, she made a decision.

"I decided to devalue my breasts," she says. "I needed it to be the same value as if I lost a pencil. Or I lost piece of paper. They could not be that important to me."

She also focused on her sense of humor, which comes naturally to Katz, who is a musical theater actress. Despite overwhelming support from friends and her husband, now state Sen. Roger Katz, she also used her humor to help them feel at ease about the change. Katz says, personally, she didn't feel much different.

"Probably the biggest misconception is that you lose your femininity, or that you - you know, that you're not sexy anymore," she says. "I've never felt that change. I've never felt that I've become less of a woman or less sexy or appealing."

The only difference, Katz says, is that she feels more powerful and confident having taken control of her medical destiny. Dr. Lisa Rutstein says she hopes Angelina Jolie's op-ed will spur women to tell their primary care doctors if they have a family history of cancer and advocate for genetic testing.

But, says Rutstein, "access is an issue in Maine." She says the only full service genetics team in the state is at Maine Med. And there's a problem with financial access as well.

"If you have MaineCare, you cannot have - it will not be paid for," she says. "If you have free care, it will be paid for. Crazy, huh?"

A genetic test can run a tab up to $3,500. Rutstein says no matter what your insurance situation, it's still important for women with a family history of breast cancer to at least get in touch with a genetics team, who can help guide them through the process.


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