Personal Health

What Angelina Jolie Didn't Tell You About Breast Cancer and That Gene

An urgent fact has been left out of the discussion that Jolie importantly got started.

Last month, I lost my too-young-to-die sister to a BRCA#1 breast cancer. When I was a toddler not yet in kindergarten, breast cancer robbed me of my mother. I am a BRCA#1 gene carrier, and recently wrote about it in my memoir, Raising Expectations and Raising Hell. Neither my sister nor my mother’s premature deaths, nor my own writing could possibly have turned BRCA#1 (and #2) into a household conversation the way a beautiful movie star could. Like millions of women, I have been reading the praise, the misogynist “jokes,” and the criticism being lobbed at Angelina Jolie.

The most urgent fact she left out of her op-ed, and that has received scant attention in the days since, is absolutely crucial: 70% of the BRCA#1 gene mutation breast cancers result in the most aggressive, least treatable form of breast cancer called the “triple negative,” a variation that more resembles ovarian than breast cancer genetically and which does not respond to any of the three main forms of treatment common among other breast cancers. The population next most likely to get triple negative breast cancer, after BRCA carriers, are African-American women.

According to Peggy Orenstein’s recent NYT Magazine cover story on the limits of the pink-fuzzy-teddy-bear breast cancer awareness movement, “Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them 'early,' while they are still small, can be too late: they have already metastasized.”

It’s safe to say that I am alive today, because after my sister was diagnosed with breast cancer, she had the gene test done. The fact that she’s now dead and I am alive leads to a very particular kind of grieving, one that mixes guilt into an already heavy stew of sadness and sorrow. Had she gotten the same directives I did, would she still be alive? I am sharing my story and celebrating Jolie’s brave if incomplete op-ed because my sister got different directives. As many have pointed out, Jolie, with more money than a small nation at her disposal, had access to the finest healthcare. I also had access to the finest healthcare, and mine came from my union.

Yes, that’s right: you get world-class healthcare in America if you are a movie star or if you belong to a union. Unfortunately, the odds in the US that a woman can overcome the anti-union, anti-collective bargaining crusade and actually succeed at forming a union in order to get good healthcare are about the same as the odds of becoming a top movie star. Restoring the right to collective bargaining would go a long way toward many more women getting access to the care I got.

Because it was 2009 and pre-Obamacare, I was forced to pay for the gene test out-of-pocket, because if I attempted to use insurance and the test was positive, the insurance company could legally have dropped my coverage. And even though it’s criminal that Myriad has patented my gene (I’d happily give a dose of it to any open-source company that wants it and dare Myriad to put me in jail), another fact omitted from the recent news is that once a single person in the family has the test at the too-expensive price, if she’s positive, the cost of the gene test for other family member drops to about $200. When they called me in to tell me I had the BRCA#1 gene, I didn’t quite understand I had entered what Barbara Ehrenreich so brilliantly described in Harpers in 2001 and in her book Bright-Sided as “Cancerland.” 

Because my mom died young of breast cancer, I read every article about it that I could get my hands on from a very early age. I had been taking all known precautions to avoid breast cancer: I didn’t eat red meat -- or any meat -- from my early teens onward; consumed only organic, hormone-free dairy products; used every form of birth control ever invented except birth control pills; had a diet rich in pesticide-free vegetables; and I did a lot of physically demanding sports. I had my baseline mammogram at 28, the age recommended given my family history, and mammograms every year thereafter, thanks to Planned Parenthood. This might have helped me avoid some other forms of breast cancer, but not the one commonly linked to the BRCA#1 gene.

With my own BRCA#1 reality confirmed, I settled on a medical team and began my work. When one of the first recommendations made was that I have a bilateral mastectomy, I thought this was an overreaction by a profit-oriented, procedure-driven healthcare system. My deep objections to the US-based healthcare industry were getting in the way of my ability to listen to my doctors or learn about what the BRCA#1 gene mutation implied. I insisted that enrolling in an intensive breast-screening program was a better option.

As each day passed in my new-normal world of being a BRCA#1 gene carrier, the picture got a bit more complicated. The high screening program I hoped for was to include quarterly needle biopsies. Fine, I thought. I don’t mind needles, I am a tomboy! Then, early on in the diagnostic work, my new mammos showed lumps. They put me through a needle biopsy—I tired quickly of the idea of those needles (they are big, bigger than, say, a blood draw needle). Beyond having oversized needles shoved into my breasts every few months, effectively turning them into a science project, other women were telling me about the agony of waiting for the results each time they got tested: Tick, tick, tick, when’s this death bomb going to explode?

I remember all through the initial intensive testing, what mattered to me was that the medical team would assure me I was clean as a whistle when it came to ovarian cancer. Like most women, I had been incorrectly interpreting the pink ribbon awareness messaging that if breast cancer was caught early, it was treatable. But the sound of two words “ovarian cancer” terrified me. With the worst survival odds, just 5%, who wouldn’t be scared of ovarian cancer? One of my best friend’s mothers, someone who was fit and in excellent health, had recently died young from ovarian cancer. And at the exact time this was all going on, a sister-like childhood friend, another really physically strong, healthy eating, athletic woman, was losing her valiant fight against ovarian cancer. She, too, was BRCA#1. “As long as it’s not ovarian, I will be fine,” was sort of my mantra.

The head of my medical team told me, in our very first meeting, “Too bad you're already 44, I wish I had met you in your late 30s, that’s when this gene seems to trigger.” Within days, a series of ultrasounds began to show something in my left ovary. While I delayed the breast decisions, the ultrasounds speeded up my “yes” to move ahead with their first recommendation, the oophorectomy (removing the ovaries and the fallopian tubes). I signed what felt like a tree’s worth of legal paperwork saying they could keep me under anesthesia while they performed a mini-biopsy, and if they found the cancer and had any concern it was migrating out, they could remove damn near anything they wanted in the lower half of my body.

When I came to in the recovery room, still bloated and super stoned from hours of being knocked out, the only thing I wanted to know was did they find any ovarian cancer? “No!” Phew. OK then, coast is clear. All I have to deal with now is surgically induced menopause 10 years ahead of schedule (ask my ex-boyfriend about experiencing surgically induced menopause).

Ten days later, the phone call I didn’t want came from Sloan Kettering. It was my oophorectomy surgeon. I knew enough to know he never called with good news. The full biopsy, the more extensive one they do post-surgery when they examine every slice rather than the quick-and-dirty mid operation mini-biopsy, revealed early stage ovarian cancer in my left ovary. The BRCA#1 gene was already producing cancer in my body; my doctor had been right. The fuse was lit and burning early in my 40s. Just like my mother. Just like my sister. We weren’t dealing with a prophylactic or theoretical discussion anymore. I am not easily scared, but suddenly I was shaking. I went from macho to moosh ball, from contesting Western medical theories to asking how quickly they could schedule my bilateral mastectomy.

The doctors wanted me to wait several months to let my insides heal. But despite a good union healthcare plan, I had a problem. I had quit my job and the Cobra extension was running out. When I explained my predicament, that I would soon rejoin the ranks of normal Americans and have no healthcare coverage, they agreed to speed things along. Weeks later, as I was being wheeled into the operating room for what would be a very long day under the knife, I remember asking, "Isn’t there anything else you can take out just to be sure? Like, most of my body?”

My BRCA#1 sister didn’t get the same advice I did, and now she’s dead. She was counseled to take the more traditional route of a lumpectomy plus lots of radiation, chemo and the endless, daily Tamoxifen. She had regular checkups. We celebrated her five-year survival anniversary. Two years later, she was diagnosed with Stage IV triple negative breast cancer. It ripped through her body so fast it surpassed even the terrifyingly grim odds she had been given. I spent the first few months of 2013 bathing her, rubbing her feet and holding her hands as she was dying, not celebrating my own five-year milestone.

I am angry and I’m not having any parties; I am doubling down in the fight to fix our rather pathetic healthcare “system.” Women shouldn’t panic after reading Angelina Jolie’s o-ed, my family’s story, or the ones being shared by other BRCA women. We should be getting pissed off that hardly any of the pink ribbon money has gone to researching how to prevent breast cancer. As Ehrenreich points out in Bright-Sided, fear is a disempowering emotion used as a tool to distract us from channeling collective anger at the root causes of many breast cancers and other cancers. Anger, when properly channeled, can topple even the biggest obstacles, like getting profiteering corporations out of the way of sound, fair and just healthcare decision-making.

Angelina Jolie created an opening; what we do with it individually and as a society is up to us. But Jolie’s star power matters: just as she focused millions on BRCA#1 and in one fell swoop removed the stigma of mastectomies, we need her to add momentum to the movement for a just healthcare system. The first step is to demand that Myriad drop its patent immediately and provide the test at cost. The second step is to get big corporations, in this case healthcare corporations, out of our political system by making it illegal for corporations to donate to politics. Patients should have the freedom to do what needs to be done -- to live, regardless of their economic circumstances. Making money off illness is sickening. Depriving the needy of life-saving healthcare should be criminal.

Jane McAlevey has been an organizer for 25 years. She is currently a post-doctoral fellow at Harvard Law School’s Labor and Worklife Program. Her latest book is No Shortcuts: Organizing for Power in the New Gilded Age (Oxford University Press).

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