Lauren Brown is the special projects editor for Quartz and this is her recent article.
I was 31 when I was diagnosed with breast cancer. My gynecologist called, and I ducked into the supply closet of our Union Square office for some privacy. She said something about a New York Times article, about estrogen receptors. It was February 2014—we’d just moved offices—and I was surrounded by unpacked bins of computer wire and post-it notes. I didn’t know how to extricate myself from the mess and re-enter the world with this information. I texted my pregnant coworker, I cried in the bathroom, I cried at my desk, and then I did some work.
This was not my first foray with having a sick breast. In March 2013, I had a radial scar removed—a lump of abnormal cells that were not cancerous. At the time, my breast surgeon told me then I was at a 10% increased risk for developing breast cancer and that I was stuck with her for life. I felt safe.
In May 2013, Angelina Jolie became the public face of breast cancerwhen she announced that she tested positive for a mutation of the BRCA-1 gene and had undergone a preventive double mastectomy. The doctors said she had an 87% risk of developing cancer. I wondered what the fallout from her announcement would mean for women like me. I was part of this cohort; my breasts and I had a stake. Back then, I was ill-informed and not facing Jolie’s choice. Or so I thought.
“Given Jolie’s level of risk, her course of action seems logical. I bet many women would have done the same for 50% risk or even much, much less. Yet it’s also a slippery slope. When in the name of health and awareness and courage do we stop lopping off our breasts and take a more realistic approach to the disease?”
In doing this, I had put myself into the public debate. Talk of Jolie went on for a year. Some participants cited studies on the rise of double mastectomies, and doctors pointed out that there is no real survival benefit in removing a healthy breast. Studies found that women have better survival rates with a lumpectomy and radiation. Advances in breast reconstruction technology, a requirement that insurers pay for reconstructive surgery, and public declarations like Jolie’s, in part, seem to have led to the increase in mastectomies.
The week after my cancer diagnosis I felt like I had to respond. I had already told the world that I might one day have to make this decision, and now, here I was.
I became obsessed with the question of whether to have a double mastectomy. And I felt affronted by the body of research and commentary (sometimes written by husbands) on the so-called epidemic of them. My heart dropped when I read a New York Times op-ed from Peggy Orenstein who was diagnosed with breast cancer in 1997 and again in 2012. I agreed with her notion that women need to be well-informed about both the risks of contralateral prophylactic mastectomy or CPM (removing a healthy breast preventatively) as well as the true health benefit. I dealt with the shock and uncertainty of cancer by throwing myself into my job. I refused to let my year be lost. But Orenstein, whom I’d greatly admired for her New York Times Magazine story “Our Feel Good War on Breast Cancer,” sounded dismissive, insensitive.
She wrote: “It’s hard to imagine, by contrast, that someone with a basal cell carcinoma on one ear would needlessly remove the other one ‘just in case’ or for the sake of ‘symmetry.’”
What was missing from the studies and dialogue was the true sum of what goes into a decision as big as this one, particularly for women in their 30s:
Getting diagnosed with breast cancer is traumatic.
It is a trauma that changes over time but doesn’t entirely go away. Making choices to ameliorate this trauma is not weak. How we treat the disease matters, but how we live matters as well. Keeping my healthy breast would mean a lifetime of mammograms, and MRIs (alternating every six months), and potential biopsies. However, it would also mean retaining sensation and the ability to breastfeed if I were to get pregnant one day.
Breast cancer is many different diseases.
There are different hormone receptors involved, oncotypes (tests for how a tumor behaves at the molecular level), tumor sizes, gene involvement, and stages or degrees of cancer spread. Much of the research performed on double mastectomies tracks women with very early stage (1 or 2) breast cancer. Young women tend to develop more aggressive forms of breast cancer. As a result, we’re treated more aggressively.
There’s little time and the landscape is constantly shifting.
First I felt a lump; then there was an ultrasound; then a biopsy; genetic testing; an MRI; more biopsies; a CT scan; a liver scan. Each new test result deals a new blow, like a mini diagnosis. With all of this new information you are trying to make the best decision you can with a limited understanding of what is happening to you. Five weeks from the day I was diagnosed, I had my surgery. You try to know yourself and do the best you can.
Statistics are funny things.
Especially when you’re on the wrong side of them. According to the most recent SEER Cancer Statistics Review, a 30-year-old woman has a 0.44% chance of developing breast cancer. That is one woman in 227. From this vantage point, a 5-8% chance of developing cancer in my healthy breast didn’t seem so farfetched. What’s more, my breast cancer did not appear in mammograms. It’s something called mammographic occult; 10% of breast cancers are like that. I didn’t exactly trust the tests to keep me safe.
I wanted to hear from other young women like me whose unique positions I felt weren’t being heard. In the middle of treatment (after I’d made my surgical choice) I surveyed nearly 50 women of all ages about their surgical choice and how they felt about their decision. I talked to a former president of the American Society of Clinical Oncology, a radiation oncologist in Israel, a researcher studying PTSD and women with breast cancer, and a surgical oncologist in Minnesota who came out with a study in July of last year about the lack of benefit breast cancer patients receive from removing the healthy breast.
As a journalist, I did what I knew how to do. I reported, asked questions, looked at the numbers. I wanted to inform readers about the unique experience of having breast cancer at a young age. But I also wanted some evidence that I had made the right decision.
The biggest risk factor for breast cancer is being a woman. The next is aging.
Dr. Cliff Hudis, the Breast Cancer Medicine Service chief at Memorial Sloan Kettering, conceded that it’s frustrating but “most people can’t do anything to mitigate risks to get breast cancer.” Being overweight, first menstruating at a young age, and having a family history are typical risk factors for breast cancer. I fit none of these profiles.
I can’t tell you how many healthy cookbooks I was given, how many conversations I got caught up in about eating chicken raised with hormones, how I was told to forego chemo in favor of a juice cleanse, how many implications were made to me that somehow I ate the wrong thing and brought this upon myself. I get it. Cancer is scary and people want to feel like there’s something they can do to prevent it.
In the fall, I dated Scott (not his real name). Scott’s friend had recently died of leukemia. On a cool Saturday evening, we found ourselves at a sports bar in the East Village in New York. An entirely pleasant day took a terrible turn when a discussion of cancer and lifestyle came to the fore. Scott blamed his friend for his own death because he didn’t become a vegan. By implication I was somehow bringing a return of cancer upon myself if I didn’t heed similar wisdom. We debated studies and statistics, but Scott kept telling me that the president of one of the cancer societies doesn’t eat meat—that’s all the evidence he needed. The night ended with Scott crying on the corner of 14th and 3rd—he had just lost his friend and was upset about the prospect of losing someone else he cared about to cancer.
Where even well-meaning people I knew failed, what Hudis said gave me comfort. There isn’t some panacea. I’ve asked every doctor I could about diet and cancer. None of them will say anything prescriptive.
“There are more cells in the body than there are stars in the universe and those cells are under constant threat. It’s almost miraculous it doesn’t go wrong immediately.” Hudis also said: “There are more cells in the body than there are stars in the universe and those cells are under constant threat. Being alive subjects you to uncountable stresses and results. You’re constantly dividing and reducing your cells and you can almost marvel that you don’t get more cancer earlier in life. It’s almost miraculous it doesn’t go wrong immediately.”
Mastectomies have dramatically risen in recent years, the reversal of a 1980s and 1990s trend of breast-conserving surgeries, or lumpectomies.A 1.2 million patient early-stage breast cancer study published in JAMA Surgery in November 2014 shows an increase in single-mastectomy rates from 34% in 1998 to 38% in 2011, a rise in double-mastectomy rates from 2% to 11%, and reconstruction rates rising from 11.6% to 36.3%.
Last year, Dr. Todd Tuttle, a Minnesota oncologist, reported the results of a study conducted over 20 years and found that the benefit of having a preventative mastectomy was less than 1%. I asked Tuttle what he saw in his own practice and he told me: “What we’ve noticed is that a lot of women, both younger women and older women, want to do everything they can to improve their long-term survival, see their kids graduate from high school, and see their grandchildren grow up, and women will say, ‘I want to have a CPM to improve my survival as best as I can.’”
Women in the US, Tuttle said, greatly overestimate their risk, in part because of our culture of high awareness.
Dr. Ben Corn, a Tel Aviv University professor, believes that older women are over-represented in the literature and younger women face a scarcity of support.
Corn said, “There’s this concern that smart women, they’ll be labeled superficial. Why would you want to lose your breast tissue if you wouldn’t have to? But there is a major quality of life component. Why can’t you assert that? What’s wrong with that?” Corn said that quality of life is one of the most important factors for women navigating this disease.
“I’m surprised. Once you begin to speak to patients, they are driven by these fears and that’s something that you wouldn’t know if you read the literature.”
In my own survey of women spanning ages 26-65, the majority had bilateral mastectomies. Many had a single or double after first having a lumpectomy that didn’t yield clear margins or a surrounding area of normal tissue. When I asked what factors they used to decide, fear, peace of mind, and a desire to live were at the top of the list. There is nothing rational about getting a cancer diagnosis, or about losing a body part—there is a wide gulf between a doctor’s study on survival rates and what a woman needs to do to feel like she can live.
“People turn around and say, ‘What life? Who am I? What am I doing?’” Many of the young women I met who have had breast cancer say the hardest part begins when treatment ends. They have to go back to life and deal with the fallout of what’s happened. Dr. Mary Charlson, the director of integrative medicine at Weill Cornell says, “People turn around and say, ‘What life? Who am I? What am I doing?’”
Between 30% and 40% of women treated with breast cancer have lasting symptoms from post-traumatic stress; they can range from irritability to avoidance (i.e., not going to the doctor’s office), intrusive thoughts, and fear of recurrence. These symptoms can last for up to 10 years. And they can be stronger in younger women.
I felt the trauma most acutely just after my diagnosis. Three weeks after I was diagnosed, there was a gas explosion in Harlem that killed eight people. Later that week there were gas company repair trucks outside our office. My coworkers speculated that there was another gas leak and joked that we were all going to die—but I didn’t find it funny. My heart pounded, my eyes welled with tears—eight people were dead, we really could die. I raced to the bathroom to regain my composure.
The stress response manifested differently over time. I had a panic attack before seeing my breast surgeon for a follow-up after surgery. I cried through an entire appointment (a routine yearly exam) with the gynecologist who gave me my diagnosis. I worried that a bump I felt on my chest during radiation was a sign of cancer’s return.
I dealt with the shock and uncertainty of cancer by throwing myself into my job. It became an anchor and an identity I could feel good about. I was online just a few days after surgery. I’d show up at the office the day after chemo; I got a promotion on the last day of radiation; I was sent to Paris to give a talk at a journalism conference two months later. I refused to let my year be lost.
As I get further away from the day of my diagnosis, it becomes harder to grasp what I’ve been through.
The stress, Charlson says, comes from the ”existential threat. The diagnosis of cancer causes one to think about the reality that life is limited for all of us.”
Any woman who had had breast cancer will tell you there is no safe zone. Death is palpable in a way you can’t unknow. Any woman who has had breast cancer will say there is no safe zone, no remission. You have it, until you don’t, until you have it again. Death is palpable in a way you can’t unknow.
From the beginning, I knew I would get a double mastectomy. Before the additional biopsies and MRIs made a single mastectomy a necessity, and the removal of the healthy breast a foregone conclusion in my mind, I considered the following: the risk of developing cancer in my other breast and going through treatment again; a desire to free myself from a lifetime of mammograms and MRIs and feel good about my body; and a wish to have my life, however long, not be dictated by a fear of cancer.
Friends told me to think of it like a boob job. But it is not the same. Women who get breast augmentations don’t routinely spend a year going through multiple procedures, body disfigurement and restricted range of motion, daily pain and muscle weakness, numbness, scarring, and the potential of losing their nipples. A boob job does not entail having your breasts cut out of your body.
For me, having had reconstruction doesn’t mean I have breasts. If someone has a leg amputated and uses a prosthetic, we don’t say she has two legs. Breasts are a functional part of the human body, not just a shape.
There is shame in being a woman without breasts.
I also felt shame in having an identity I didn’t want. In having to tell any doctor for the rest of my life that I had breast cancer. That I had a double mastectomy. That what felt like a secret was required knowledge for a whole panoply of strangers.
Synonyms of cancer: evil, scourge, poison, plague.
Illnesses are stigmatized for many reasons: some cultures are superstitious or respond to diagnosis with denial. Others believe that cancer is something brought upon one’s self. And being sick is seen as a sign of weakness, a step closer to decay and death, that people don’t want to see.
Talking about cancer was how I made it real. I tried the words out on my tongue, tested my will to look into someone’s eyes and tell them something horrific about myself. The way we talk about cancer matters. Whether we talk about cancer at all has a direct relationship to the shame and the stigma. It’s not about raising awareness; in many ways talking about it and writing about it was, for me, how I made it real. I tried out the words on my tongue, tested my will to look into someone’s eyes and tell them something horrific about myself.
At first I needed to tell everyone; it felt like a secret not to. At work, I didn’t want people to speculate about what was going on. In dating, I wanted to preempt rejection, to offer that I was defective, undesirable, which was how I felt. Plenty of men didn’t care, or said they didn’t.
I am single and in my early 30s. My breasts were nothing special but they were mine and I’d planned on having them for life. Part of my decision to have a double mastectomy and reconstruction was to try to look like a version of me I could feel good about. To retain my sexuality and have a body that a man might still desire.
A few weeks into chemotherapy, I went on a date. Ralph (not his real name) was an Austrian quant who worked on Wall Street, cute and funny. The conversation was flowing well when the subject of his brother, who’d become a Tibetan monk, came up. How was my worldview shaped by religion? Ralph decided a thought exercise might clarify things:
Ralph: If you got cancer, would you think “bad luck” or “why me”?
Me: I do have cancer, and I think it’s bad luck.
Ralph: At least you didn’t lose your hair.
Me: I did.
Ralph: At least you have a good wig.
For a while, I couldn’t shake the impulse to confess. When I would tell someone, I was aware that this would be uncomfortable for them, that they wouldn’t know what to say, or how to deal with it. But then I think, this is uncomfortable for me, too. I don’t know what to say, I don’t know how to deal with it. It is my way of re-leveling the playing field, of saying: “This is just as weird for me as it is for you.”
Now, I want to talk about it so that it’s not shameful. I want people who have had cancer to bring their experiences into the world, into a dialogue that is miserably lacking and poorly representative of the real experience of cancer.
In 1971, US president Richard Nixon declared a “war on cancer” with the passage of the National Cancer Act, which expanded the American research effort and budget devoted to the disease. It’s common for people who have had cancer to reject the war metaphors: being called a survivor, having fought a battle, displaying great bravery. Yet these terms are increasingly used by cancer-free supporters and charitable organizations to rally the troops and raise funds.
But in that language, getting sick or dying somehow means we didn’t try hard enough, that we were defeated. I reject the language for another reason: My life is no more of a struggle than anyone else’s. In one form or another, we’re all trying to survive until that’s no longer an option. Facing that reality requires as much bravery as it takes, every day, to endure the constellation of tragedies that make up a life.
WRITTEN BY Lauren Alix Brown
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Original story http://qz.com/432083/why-i-chose-a-life-without-breasts-after-cancer/