Angelina Jolie's decision to have a double mastectomy to
prevent breast cancer may have stunned fans of the Oscar-winning actress, but
doctors say her choice is shared by many other women with a high genetic risk
for breast cancer.
Jolie, who described her surgery and three-month recovery at
length in an opinion piece in the New York Times on Tuesday, says she hopes her
experience will encourage other women with a family risk of breast cancer to
Cancer experts said that Jolie's treatment was an informed
choice - reducing her risk of developing cancer from 87% to less than 5% - and
hope that it can help frame the discussion for patients facing a similar
For years, researchers have been warning about increases in
the use of preventive mastectomy among women with lesser risks than Jolie. A
study by Dr Michel Sable of the University of Michigan Medical School last
November found that 70% of breast cancer patients who receive a double
mastectomy don't have a clinical reason for getting the procedure.
Fear of cancer coming
In 90% of those cases, fear that a cancer might come back
was the reason for the decision, the researchers found. Dr Isabelle Bedrosian,
a surgical oncologist at MD Anderson Cancer Center in Houston, calls that
approach "overkill," as there is no proof that a double mastectomy
helps women who have had breast cancer in one breast.
That was not the case with Jolie, who did not have cancer
but sought treatment because of her family's high risk of breast
cancer."Angelina Jolie's situation is very different. In her context, I
think moving ahead with a double mastectomy is appropriate and is fully
justified oncologically as well," she said.
Jolie tested positive for a harmful mutation in one of the
BRCA genes, making her about five times more likely to develop breast cancer
than women who do not carry this mutation, according to the US National Cancer
Institute. Mutations in the BRCA 1 and BRCA 2 genes can increase a woman's risk
of breast cancer by 60 to 80%. Jolie's risk was amplified by the fact that her
mother died from breast cancer at age 56, raising the stakes that she could
have a cancer at a younger age.
Jolie thought of her
Jolie said she underwent the surgery to spare her children
from the agony she witnessed as her mother struggled with breast cancer for a
decade. That is the case for many women who seek out genetic counseling, said
Dr Susan Klugman, director of reproductive genetics at Montefiore Medical
Center in New York, who has done BRCA testing on thousands of women.
Klugman said counselors help women work through what it
would mean to learn they are positive for the gene."Some women are
overwhelmed with the information and some women truly feel empowered, said
Klugman, adding that she has seen several women in their 30s and 40s with
similar risks who chose a double mastectomy as a preventive step.
"Angelina Jolie realised her mom died in her 50s. She's got six kids. She
wants to live. These are the stories we see on a daily basis."
Mastectomies have advanced considerably from the days in
which surgeons would remove vast amounts of tissue and skin, leaving women
alive but disfigured. Jolie underwent a series of procedures that preserved
most of her skin and nipples, while the underlying tissue was removed.
Her doctors also used tissue expanders, which are deflated
saline implants that are expanded over a period of several weeks during the
recovery period and ultimately replaced by either a saline or silicone implant.
Other procedures can involve the use of tissue from other parts of the body,
including fat tissue from the stomach.
The whole procedure,
including reconstruction, can cost as much as $75,000 (R 705 585), according to
the American Society of Plastic Surgeons, a cost private insurers generally
cover, breast experts said."The reconstructions that are done these days
are absolutely incredible, which is why I think that many more women choose to
have prophylactic mastectomies than they did in the past," said Dr Sharon
Rosenbaum Smith, a breast cancer surgeon at St Luke's Roosevelt Medical Center
in New York."It is done from a very small incision that often is
completely hidden either on the areola or underneath the breast, so you
basically see no scars," she said.
However, even among women for whom a double mastectomy could
be potentially life saving, choosing to have this surgery is difficult. Klugman's
hospital runs a support group for women who have a high genetic risk for breast
cancer. These women call themselves "pre-vivors".
She recently had an
82-year-old woman with breast cancer come in for genetic testing because her
daughter wanted her to be tested."She was positive, but her daughter then
declined testing," Klugman said. "She was too nervous."Klugman
said she hopes Jolie's decision to make her surgery public has removed some of
the stigma. "A lot of people are afraid to talk about their
genetics," Klugman said.
Risks, costs involved
Deborah Capko, a breast surgeon at Memorial Sloan-Kettering
Cancer Center in New York, urges all of her patients who get the surgery to
first undergo genetic testing and counseling. According to the National Cancer
Institute, preventive mastectomy can reduce the risk of developing breast
cancer in moderate- and high-risk women by 90%.
But there is no guarantee that the procedure will completely
protect a woman. Breast tissue can sometimes be found in the collarbone or
chest wall, for example. And like any surgery, there are is a risk of infection
or excessive bleeding. Myriad Genetics owns the patents for these gene tests,
which cost between R28 223 - R37631 each. Last month, the US Supreme Court took
up the issue of whether human DNA can be the subject of a patent and a decision
in the case is expected next month.
Experts believe a decision against Myriad would help reduce
the cost of the tests and increase access. For women with private insurance,
the cost of treatment is usually covered, especially if they test positive for
a BRCA mutation. President Barack Obama's health law made coverage of the BRCA
test mandatory as a preventive health service since August 2012. New health
plans that will be offered to millions of uninsured Americans in October must
also cover the service for free.