A major health decision by an A-list movie star brought breast cancer prevention into the public eye on Tuesday.
Angelina Jolie announced she has had a double mastectomy, the surgical removal of both breasts, to reduce her risk of getting breast cancer.
Jolie has the BRCA1 gene mutation which substantially raises her risk of having breast cancer.
Her mother died of cancer at age 56.
Many women have made Jolie's choice.
Many are considering it.
In Tucson, the University of Arizona Cancer Center will tell you all women are different.
When it comes to making the decision whether to have a double mastectomy to prevent breast cancer, it's not one size fits all.
The experts say five to ten percent of people with breast cancer have the BRAC1 or BRAC2 genetic mutation.
Tucsonan Patti Anderson had a different breast cancer issue, but she also has had a double mastectomy to reduce her chances dying from breast cancer.
She made her decision only after a lot of thought, and with all the information she could gather from people trained in genetics, breast cancer prevention and surgery.
Anderson explains, "It's a hard decision because it is a big surgery."
University of Arizona Breast Cancer Surgeon Dr. Michele Ley says almost the only time breast cancer surgeons strongly recommend double mastectomy for patients without breast cancer is when the patient, like Jolie, has a BRCA gene mutation.
"Their risk is not reduced by 100 percent, but it's by 90 percent. So you get down to about a one-to-five percent risk of developing breast cancer which is actually even far less than the general population," says Dr. Ley.
However, Dr. Ley says a patient should have double mastectomy surgery only after getting all the information necessary from genetic counselors, surgeons, even the surgeon who will be doing the reconstructive surgery after the mastectomy.
She says the patient should understand the psychological impact which, she believes, can be bigger than the physical aspect.
"It's a lot of surgery. It's a lot of psychological impact. And some of my patients who've had a double mastectomy, it's really affected their relationships in life. Not just with their spouse or their significant other, but with other people in their family," says Dr. Ley.
Dr. Ley says, though she's glad the information about prevention is being heard, she's concerned the news about Jolie could drive more women to have the same surgery when it's not medically necessary because it won't improve their chances of survival.
"The one danger I see is that there is an epidemic of double mastectomy in the United States right now for small cancers for patients who are not at high risk for developing additional cancers or patients who even are at high risk, but their risk can be managed with other methods," says Dr. Ley.
"I have many patients with small breast cancers who are in their 30's who come to me wanting a double mastectomy, but when they find out that it's not going to improve their survival, they pretty quickly change their mind," says Dr. Ley.
The BRCA1 and BRCA2 gene mutation also is implicated in an increased risk of ovarian cancer.
Jolie say she has begun with mastectomy because her risk of breast cancer is higher than her risk of ovarian cancer, and the surgery to remove the ovaries is more complex.
Dr. Ley says not everyone who has the gene mutation should have a mastectomy immediately, especially if the patient is young.
She says risk of illness usually comes after age 30, and patients can be carefully screened before that.
She says, for many patients, they can wait until they are finished with child-bearing before they consider having preventive mastectomy, hysterectomy or the removal of the ovaries.
Dr. Ley says it's best that the patient consults with the medical team to discuss the level of risk and when to do the surgery.
For Patti Anderson, having a double mastectomy was a difficult decision, but one with which she is comfortable, especially because she has children and grandchildren.
"They wanted me to be here, so they wanted me to do the most I could do to decrease my risk," Anderson says.
Dr. Ley says, in the end, patients must learn exactly what the cancer risk is, and the best way to manage that risk before making any decisions that will affect their lives forever.
Another issue Jolie raised is the cost of the genetic testing.
Dr. Ley says not every woman should be tested.
She says genetic counselors and others can help determine if testing is necessary.
However, the cost of testing is $3,000 in the United States.
Jolie wants a system that ensures more women around the world have access to genetic testing and lifesaving preventive treatment.
In her op-ed piece in the New York Times, Jolie writes, "Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries."
The National Cancer Institute has more information on preventive mastectomy.
Susan G. Koman For the Cure Southern Arizona released a statement that says, in part, "'Angelina Jolie has displayed tremendous courage in announcing her decision. We hope her courage will inspire other women to discuss their potential breast cancer risk with their healthcare providers,'" said Connie Melton, Interim Executive Director at Komen Southern Arizona, noting that genetic testing is only recommended for certain people with risk factors."
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