My first thought when I heard the news of Angelina Jolie’s preventative double mastectomy? “Oh no, not again.”
I wasn't shocked to learn that a celebrity had undergone this procedure. Ms. Jolie wasn't the first. No. It was the reminder that somewhere, another woman had been forced to make a difficult and painful health choice. Maybe it's someone confused by mammography guidelines asking for my advice or guidance. Or I see a Twitter chat about a woman balancing the latest breast cancer treatment against its nasty side effects. It may be news on Facebook about another friend’s re-occurrence, and how her cancer has now metastasized (moved on to threaten other body parts), leaving her and her loved ones with few options.
Given my line of work I could view this as part of the job. But I wonder why, after all these years, these stories are more the norm and not the exception. Is this what we are talking about when we ask women to be “aware” of breast cancer and potential “risk?” Angelina Jolie took action once she discovered her faulty genes increased her risk. That’s why she chose a prophylactic double mastectomy. In reading her essay in the New York Times, it’s clear that her breasts won't be the first body parts to go, and a hysterectomy is next on the getting “pro-active” list.
To many women, this may seem like a no brainer. My mother was 47 when she discovered a lump in her breast. It was 1966. They put her under a general anesthetic, biopsied her breast tissue and performed a radical mastectomy on the spot. That was only treatment available at the time. And it meant cutting away more than breast flesh: they also took away chest muscles, sweat glands, and lymph nodes, too. She woke up and found a 36 inch jagged scar down the front of a sunken chest.
She’s 94 today and considers herself lucky: back then they didn’t add chemo or radiation to her treatment. And breast reconstruction wasn’t an option. She didn’t care. She was happy to be alive.
So I get the medical choice Angelina Jolie faced. Why not remove breasts and ovaries as a precaution? If my mother had been given the option, she would still have picked a disfiguring mastectomy over certain death.
But the subtitle of Jolie’s essay spoke to more than choice. It hinted at “opening up a conversation around women’s health.” And that is an important distinction from focusing on breast cancer. No one knows where rogue cancer cells begin their journey. We just know if they move out of our breasts they can endanger our lives. Science can’t predict which cells are more aggressive, or less. And that’s what makes physicians vigilant about cutting away or otherwise destroying, any trace of pre-cancerous cells, from our still healthy breasts.
Remember when being ‘pro-active’ meant going in for a mammogram? That was my generation’s answer to genetic testing. I went in for one every year from the time I was 30 years old. (Doctors suggested a baseline and besides, my risk was higher because of my mother’s breast cancer diagnosis.) So I listened to the experts and now look back at 26 years of mammographic images. But today science tells me that I didn’t really need all those medical procedures. They weren’t necessary at my age and…oh…by the way there’s a risk that being exposed to radiation may have upped your breast cancer risk. Oops.
Angelina Jolie’s rightly puts the spotlight on questions we should be asking about the future of women's health care, and where our energies and resources should be focused. Women should demand answers to the questions raised in Jolie's piece.
First, why is genetic testing so expensive? Short answer? Because one company sets the price. Myriad Genetics owns the patent on the BRCA 1 and BRCA 2 gene. Their right to keep these patents is now being reviewed by the Supreme Court, with a decision due in June. Opponents of corporate gene ownership argue that it reduces the ability of cancer researchers to collaborate and share information. One thing it does do is shift resources from finding a cure to defending corporate interests. And high testing costs have spawned a new subculture: companies offering to finance loans to pay for these tests. Is this a breast cancer cure? Lining the pockets of those who profit from disease?
Second, even if all women were provided genetic testing free of charge, would it reduce the number of diagnosed or dying each year? Not by much. Breast cancer gene mutations make up only 5% to 10% of all diagnosed breast cancers. So what happens to the other 90%? Those women get offered choices like lumpectomies, mastectomies, radiation, chemo, or pharmaceutical treatments. Should research dollars go toward finding earlier and earlier cancers – some of which may not even need to be treated? How will that change treatments? Will they be any less life altering or debilitating?
Third, why has cutting off a woman’s body parts---even before any cancer is found---become an acceptable way to prevent disease? It wasn’t to my mother’s generation and those that first spoke out publicly about breast cancer, and who demanded better alternatives. But now fewer scars and better aesthetic outcomes make it okay? I hear younger women dismiss breast cancer as a way of getting a new “boob job.”
Angelina Jolie may have been pleased with her small scars and the results of her surgery, but her procedures and recovery took several months. I know women who’ve waited years and suffered multiple complications trying to rebuild their prosthetic breasts.
The media calls it “breast removal,” but make no mistake: mastectomies are amputations, not cosmetic breast procedures. Most women will never again regain any feeling in their chest area or their nipples. Only 30% of mastectomy patients choose reconstructive surgery, for a variety of reasons. Many aren’t eligible for implants and suffer scars across their belly and backs in an effort to recreate faux breast shapes on their chests. Then there’s the time, pain, and cost involved from insurance or lost work hours. It’s not as pretty or simple as it sounds.
Today, surgery is just the beginning of a woman’s ‘journey’ through breast cancer. Additional therapies result in hair loss, lymphedema (painful swelling and loss of arm movement), chemo brain, weight gain, and diminished sex drive, just to review the highlights. Those women are now called the “lucky” ones, the ones whose cancer hasn’t metastasized and spread to the some other part of their body. Because women with metastatic breast cancer know they have a death sentence. All those pink ribbons of hope, walks, and funds raised, are not directed at finding a cure for their kind of breast cancer.
Yes, we need to have this conversation about women’s health. We need to stop talking about saving women’s “breasts” and start talking about improving the quality of women’s lives. We need to take a hard look at where the millions of dollars raised in the name of saving women’s breasts is targeted – and shift priorities. We need to replace symbols of cleavage and bras with those of the faces of women living with and dying from this disease every day.
We need to ask who benefits most from a narrow focus on awareness and early detection of breast cancer, and how we can change the conversation to one that reduces incidence (that pesky one in 8 number that hasn’t improved in decades) and over-diagnosis. We need to question big drug companies, the medical status quo, and even well meaning but bloated corporate breast cancer charities.
The public figures of my mother’s generation told their very personal stories about their medical experiences as a way to highlight the need for greater medical research and education. They stood together and declared a war on breast cancer and demanded an end to the disease. They didn’t want their daughters and granddaughters to face their limited choices. Angelina Jolie’s very public words can be a starting point for another important conversation.
But it shouldn’t be about continuing to reduce a global epidemic of cancer by cutting it out of women, one boob or ovary at a time.