Was Angelina Jolie's Double Mastectomy Really Advisable or Was She an Unwitting Victim of Fear, Commercial Exploitation and Junk Science?

[Jim Jensen]

Angelina Jolie and the One Percent
Scientific AmericanBy Gayle Sulik | Scientific American – 22 hrs ago..

After learning that she had inherited a mutation on one of the so-
called breast cancer genes, actress Angelina Jolie decided to have a
double mastectomy to reduce her risk of developing breast cancer. She
also plans to have her ovaries removed to reduce her risk of ovarian
cancer. It may sound like a drastic measure (to put it mildly) but
mutations on the breast cancer genes (BRCA1 and BRCA2) increase the
overall risk of developing several cancers, including prostate,
pancreatic, testicular, ovarian, and breast. On average, a woman with
a BRCA1 mutation (the one Jolie has) has a 65 percent risk of
developing breast cancer and a 39 percent risk of ovarian cancer by
the age of 70. Jolie's mother died of ovarian cancer at age 56, after
ten years of living with the disease. Jolie explained her medical
decision in an op-ed in The New York Times, saying that she decided to
be proactive and to minimize the risk as much [she] could.
Since the Angelina Jolie story broke, there's been a flurry of
discussion about risks, medical interventions, access to medical care,
body image, genetics and gene patents, reconstructive surgeries, and
of course, health literacy and the role of celebrities in
disseminating health information. These are useful conversations that
I hope will continue. In the meantime, we should remember an important
caveat about Angelina Jolie's situation. Namely, that it doesn't apply
to most women.
Only about 1 in 600 women have variants on the breast cancer genes
that are known to increase cancer risk. Women of Ashkenazi Jewish
descent are more likely to have BRCA mutations, but overall less than
one percent of the U.S. population of women has them -- highly
significant if you're in that one percent, but not so for the vast
majority who do not have strong family histories of inherited cancer.
In total, 5 to 10 percent of breast cancer cases, and 10 to 15 percent
of ovarian cancer cases, involve mutations on the BRCA genes. Most do
not. The interactions between genes and other aspects of the molecular
environment are not clear enough to explain why most cases do not
involve inherited mutations or why not everyone who inherits mutations
in the BRCA genes develops cancer. Though family history of breast or
ovarian cancer in a primary relative (such as a mother or sister) may
increase a persons' risk, even these families do not necessarily carry
mutations on the BRCA genes. For those with strong family histories
that have mutations of unknown significance (and there are many),
decision-making about risk-reduction strategies is even more
complicated and precarious.
And then there are people like Angelina Jolie -- a woman with a
mutation on one of the breast cancer genes who does indeed have a
higher than average risk of developing breast or ovarian cancer over
her lifetime. Since this is a lifetime risk, the younger the woman the
lower the risk. At age 40, a woman's risk of developing breast cancer
by the time she turns 50 is 16 percent. Angelina Jolie is only 37.
There is no crystal ball to say when cancer will develop or in whom.
Most cancer stems from multiple factors and the complicated ecosystems
of our bodies and the external environments that affect them. There
are reasonable ways, however, to evaluate one's cancer risk. For
ovarian cancer, known risk factors include age, reproductive factors,
inherited genetic mutations, and a strong family history of breast,
ovarian, or colon cancer. For breast cancer, risk factors include age,
reproductive factors, inherited genetic mutations, postmenopausal
obesity, hormone replacement therapy, alcohol consumption, and
previous history of cancer of the endometrium, ovary, or colon.
Unfortunately, risk factors are more relative than absolute. Seventy
percent of those diagnosed with breast cancer have none of the known
risk factors (besides being a woman).
As a result, many women overestimate their breast cancer risk, choose
double mastectomies when cancer is only detected in one breast and
there is no medical reason for doing so, and experience overdiagnosis,
overtreatment, and an overabundance of self-surveillance. Genetic
testing now blasts into the risk-focused cancer surveillance market
with the joyful promise of proactive, empowered, life-saving decision-
making -- a promise they may help to deliver for people in the one
percent. But with more than 1000 mutations already identified in the
BRCA genes (and others yet to be discovered), most genetic profiles
and treatment options are not so straightforward.
The Commercial Exploitation of Fear, Risk, and Body Image
With nearly 3 million women living with a breast cancer diagnosis in
the United States, the advocacy and consumer bases are huge. Pink
events in cities across America from pub-crawls to 5-kilometer races
call attention to breast cancer, demand media attention, and saturate
the culture. The empowerment/awareness context easily commercializes
almost every aspect of the disease (i.e., awareness, risk, prevention,
diagnosis, treatment, survivorship, research, support -- all propped
up with a seemingly endless array of pink products and medical
interventions.) With 65 thousand new cases of noninvasive carcinoma in
situ and more than 232 thousand new cases of invasive breast cancer
this year, the breast cancer consumer base continues to grow.

In addition to the use of emotional appeals, breast cancer
advertisements increasingly use sex to sell a variety of pinked
products. Some of the recent trends include the sexual objectification
of women in the name of awareness itself. Femininity and stereotypical
beauty ideals easily morph into advertisements for cosmetics and
cosmetic surgeries aimed at both the diagnosed and would-be breast
cancer supporters. The number of plastic surgery procedures generally
increases about 5 percent each year. Ninety-one percent of all
procedures are done on women, with breast augmentation topping the
list since 2006. Now those in the beauty business can target women in
breast cancer awareness campaigns.
The Think Pink Giveaways are not earmarked specifically for women with
or without breast cancer. They merely paint a portrait of the ideal
woman, perfected through the art of surgery. Incidentally, there was a
22 percent increase in breast reconstruction surgeries (from 79,000 to
96,000 procedures) between 2000 and 2011. Could the point be that, as
one breast cancer blogger asks, women's culturally acceptable body-
loathing plays into these choices? One thing for certain is that both
the advertisements and the educational materials tend to ignore the
postoperative difficulties frequently accompanying these surgeries.

A "Beyond the Shock" educational video from the National Breast Cancer
Foundation fails to mention complications in its online guide to
understanding breast cancer. In the chapter on reconstruction, there
is no discussion of multiple surgeries, pain and weakness, scar
tissue, nerve damage, risks of infection and implant rupture, and
other complications. The video of a faceless caricature of a woman
simply states that, "Following a mastectomy, you have options to help
you become comfortable with the changes in your body. They are all
options, with benefits to each approach. What is best for you and your
body may not be what is best for another woman."
Sugarcoating or ignoring the risks involved in major surgeries like
mastectomy and reconstruction are an affront to women facing life-
threatening disease and fear about their futures. Now with news about
sexy Angelina Jolie's "Boob-Job," as it was referred to in Vibe
Weekly, it will take a comprehensive re-education campaign to convey
the many complexities such a decision entails, for those already
diagnosed with cancer and for those who may have genetic
predispositions. Unfortunately, too many cosmetic surgeons and cancer
centers have been vigorously posting press releases and advertisements
to highlight the positives, rather than offering a complete picture.
The Pink Lotus Breast Center where Angelina Jolie was treated
showcased her "Brave Mastectomy Decision" on their website, with a
fade-in image of celebrity Sheryl Crow, who, unlike Jolie, was
diagnosed with and treated for breast cancer. Looking more like a spa
than a cancer center Pink Lotus boasts patient choice, top surgeons,
and holistic and complementary services (which may not be covered by
insurance plans). After detailing the main stages of Jolie' treatment
in her blog, Dr. Kristi Funk writes, "Like Angelina, I urge women who
feel they might have reason to be at risk for a BRCA gene mutation,
perhaps because of a strong family history of cancer, to seek medical
advice and to take control of their futures." The uncertain language
(e.g., perhaps, might), coupled with the decisiveness of taking
control of one's future is a common advertising formula in a
medicalized society. Genetic testing companies similarly advertise the
"life-saving, disease-preventing" opportunities of genetic testing
even though the benefits for most would be uncertain at best.
The value of preventive measures for people at high risk
notwithstanding, risk itself is a valuable commodity. The stock for
Myriad Genetics -- the company that presently owns the patents on the
breast cancer genes and monopolizes the market on BRCA analysis (e.g.,
trademarked as BRACAnalysis) -- went up 3 percent the day of the op-ed
to a three-year high with twice the usual trading volume. Myriad
markets both to consumers directly and to physicians and other health
practitioners. According to Director of the Genetic Counseling Program
at the Yale Cancer Center, Ellen Matloff, Myriad has been known to
advertise in ways that "mislead [physicians] to think that 10 percent
or more of their patients need the [BRACAnalysis] test, when that is
not the case." The Supreme Court will determine in June whether
Myriad's patents on the BRCA genes are indeed legal.
While there is no doubt that people with a strong family history of a
cancer linked to the breast cancer genes should have reasonable and
affordable access to diagnostic testing, genetic counselors only
recommend the tests for those with high-risk profiles:
"Breast cancer before the age of 45, several family members with the
disease on the same side of the family, breast cancer and ovarian or
pancreatic cancer on the same side of the family, a family history of
male breast cancer, or Jewish ancestry combined with even one case of
breast or ovarian cancer in the family."
Most women do not fit high-risk profiles because most cancers do not
result from inherited gene mutations. The majority of genetic
mutations are acquired over a person's lifetime (i.e., somatic
mutations). This is why the diagnostic tests are only recommended for
people with specific risk profiles, and why rampant genetic testing
would have little impact on the total cancer burden.
The Angelina Jolie case opens the door for thinking about what is at
stake in the cancer wars especially for people at increased risk. Yet
Angelina Jolie is in a unique and privileged position. She can get the
best care, top surgeons, family help, and everything else that comes
with power and wealth. For the rest of us, tough medical decisions
come with other costs. But we all deserve quality information,
evidence-based medicine, and access to comprehensive and coordinated
health care that is free from conflicts of interest and the profit
motives of commercial enterprises that are eager take advantage of our
fears while selling us superficial "solutions" to our problems.