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BRCA testing: Are the medical options sensible?

Angelina Jolie Happy Before Her Cancer Decision

With her letter published in the NY Times My Medical Choice Angelina Jolie bravely offered herself and her experience as a kind of case study. And now, as she probably expected, people from far and wide, medical professionals, geneticists, and the media are all wondering if “the most beautiful woman in the world” made the right choice by deciding to go under the knife.

In this medical professional’s opinion the answer is absolutely!—provided she was given all the nuanced details surrounding her medical situation and the various options she had available to her. And that’s where I feel something may have gone awry.

Though I’ve written extensively about genetics I am not a genetic counselor. I feel qualified to offer my perspective publicly because I do have almost 30 years experience reading scientific articles and drawing conclusions, and am compelled to offer my perspective because, when I look at the data, this is what I see:

Angelina Jolie's Choice BRCA Treatment options

It looks as though, if these sources are accurate, it appears there is little benefit, actually no benefit, to prophylactic mastectomy (prophylactic meaning to prevent ever developing cancer) over screening in terms of mortality.

This chart is intended solely to show people who have not been through the process that it’s a pretty close call and can not be an easy decision. It is not in any way intended to suggest Jolie made the wrong choice.

I would like to direct your attention to the medical system itself.

Time for a new approach?

As a medical professional, I’m observing that the culture of intervention in this country has evolved to such an extent that some who counsel patients through what could be the most challenging decision making period of their lives are presenting the most invasive options without hesitation and failing to present the least invasive. Hospitals and insurance plans have greased the rails that bring patients under the knife, meanwhile if anyone wants to learn about the proven benefits of diet and exercise they must do so without any professional guidance—at least none that insurance is going to cover.

Angelina Jolie wrote her article in the hopes that she would start a dialogue and her bravery—her willingness to share her feelings—certainly got our attention. I would like to see another kind of bravery take center stage: Someone in a position of power willing to challenge the status quo by initiating a dialogue on the power of our inborn biology to protect us from cancer.

There is good reason to believe, thanks to accumulating research, that the vast majority of women who do ultimately develop cancer (and we need to remember that Angelina Jolie did not herself yet have cancer) suffer not from a failure in their genes or the inevitability of their family history, but rather from a failure of their lifestyle and the inevitability of their daily choices to allow rogue cells to develop and flourish. And this means if we let a women walk out of our office without advising her of this newly understood reality—which is not an easy thing to do given the implications—we let a powerful opportunity for positive change slip through our fingers.

A Bold New Technology: Biology

For every woman diagnosed with a breast cancer, dozens more first faced down the potential diagnosis before ultimately learning that the biopsy was negative or the second mammogram came back normal and they dodged the bullet, at least for the time being. So each day around the country, as women leave the doctors office relived of their fear but still in the dark about our new understanding of cancer’s origins, hundreds of such opportunities are being lost. With healthcare costs spiraling upwards at a rate that is jeopardizing the entire concept of health insurance, the need for awareness of this new perspective about cancer seems urgent. Who is going to step up and push the conversation in this new direction?

Cancer is one of the most terrifying words I have to use while in a room with a patient. Those facing a possible diagnosis of cancer are some of the most anxious, sleep deprived patients I see, and breast cancer, with its connotations of disfigurement and its track record of removing young women from their families prematurely, is perhaps the most anxiety provoking. If anyone considers this her potential reality she quickly prepares to make radical changes. In fact, a radial change seems like the most logical reaction, the safest choice, in that it is the most guaranteed to make a clean break from the terrifying present. In the midst of all the jargon and push for immediate action from surgeons and other specialists, it is my constant challenge to make sure that the choices presented to my patients are framed up properly.

If we present the benefits of only the invasive options, then patients are going to make invasive choices first. And right now, I am not convinced that this habit of our current medical status quo is at all in keeping with the dictum primum non nocere: First do no harm.

REFERENCES and RELEVANT ARTICLES used in compiling data

On the need for genetic counseling before BRCA testing (see my second comment below)

Criteria doctors commonly use to decide if you are at high risk for breast cancer

Study Shows Mutations in BRCA Genes Don’t Influence Survival Rates

BRCA1 and BRCA2 Genes and Breast Cancer Survival

Ten- to Fourteen-Year Effect of Screening on Breast Cancer Mortality

Outcome of Preventive Surgery and Screening for Breast and Ovarian Cancer in BRCA Mutation Carriers

Long-term results of screening with magnetic resonance imaging in women with BRCA mutations.

Cancer statistics, 2013.

Prophylactic Mastectomy

Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE Study Group.

Breast cancer in 3,558 women: age as a significant determinant in the rate of dying and causes of death.

Risk-reducing strategies for women carrying brca1/2 mutations with a focus on prophylactic surgery