I wanted my body back

By Anonymous (Translated from Hebrew by Miriam Erez)

While we all know that the day will come when our bodies will betray us, the near-certainty entailed in carrying the “wrong” gene renders the betrayal up-close and immediate, transforming one’s body into a disaster zone. And then there’s the comparison that’s always there, awaiting me at the end of the day: No words can describe my fear of ending my life as my mother’s ended.

I’ll begin with my personal history, as it seems to me that it’s impossible to understand what it’s like to carry the gene for breast and ovarian cancer if we speak only in numbers. My mother got sick the first time when I was a year old. She had one breast removed. A few years later, a growth was discovered in the other breast. She then had that one removed, and afterwards underwent years of chemotherapy, radiation, and other treatments.

Toward her death, when the cancer had metastasized to her liver and neck vertebrae, a sporadic growth was found in her large intestine, also related to a genetic mutation. We’d joke that she was a walking cancer factory.

From what I’ve heard, in her youth my mother was pretty. Apparently, she agreed. In pictures, you can see it in the confident way she faces the camera. But what I recall, having grown up under the shadow of illness, is mainly what the illness did to her. I recall the scars, the oversize t-shirts she wore as she looked in the mirror, not meeting her own gaze; I recall her in the changing rooms at the swimming pool, all the naked women around, worrying that her towel would fall off, willing her to wrap it securely around herself. I recall the shame. No one was to see, no one was to know, and we were not to talk about it. And her body always had to be monitored, as at any moment it could become the enemy. As a girl and teenager, I internalized it well. Even today, my body sometimes feels like a parasite, like a burden.

My mother was my and my siblings’ best friend; she was nearly our whole world: She loved us, she loved life, and she did all she could to live long enough to see us grow up. She fought for her life harder than I can imagine myself or anyone else fighting, in order, for instance, to see her first grandchild. While she did make it to some milestones, I lost her too soon, knowing too little about the world.

So that’s my history. And despite the fact that I knew that my mother carried the mutation, and that there’s a 50% chance that I’m also a BRCA carrier, over the years, I decided not to get tested. Those around me thought otherwise, except for Daz, my family physician, who added to the calculus the emotional price of knowing whether or not one is a carrier. Even then I knew that I was paying an emotional price, and teetered between fear and denial. But the denial option collapsed when cancer again “visited” my family. This time I felt like I was next in line, and so a year ago went to get tested.

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I tested positive for the BRCA gene. At first the knowledge was relief, as it forces one to face one’s worst fears and mobilize one’s resources to deal with them. But in the macro, it was a particularly hard year, with much pain, fear, and wakening in the middle of the night. All of us BRCA carriers know that the day will arrive when our bodies will betray us, as the near-certainty entailed in carrying the “wrong” gene renders the betrayal up-close and immediate; transforming one’s body into a disaster zone. And then there’s the comparison that always there, awaiting me at the end of the day: No words can describe my fear of ending my life as my mother’s ended.

For the past year, I’ve been under the care of a physician and am studying my options. You could say that I’ve almost decided to go for a mastectomy. The discourse that arose from Angelina Jolie’s mastectomy caught me off guard, and without meaning to, in the past two weeks, I’ve found myself dealing almost exclusively with the subject, reading every status update, talkback, and article thereon.

And there’s so much disinformation, not to mention insensitivity; a lot of people taking the liberty of giving their opinions without knowing what they’re talking about. My body feels like a combat zone, with everyone and their brother having their say about it: One woman believes that breast removal is feminist, while another sees it as the ultimate manifestation of patriarchy and male-centered medicine; one woman thinks you need courage to amputate, courage that she was sorry she hadn’t had before she’d become ill; while another woman views amputation as a good excuse to undergo reconstruction and give yourself the rack you never had. And what about Brad? Does he regret not staying with Jennifer Aniston, or is he happily paired with Jolie, ready to accept her “as is”? And let’s not forget all the geniuses who reduce it down to “So why not remove a brain lobe to prevent brain cancer? Why not just commit suicide to avoid dying?”

So much bullsh_t has been making the rounds, and I’m certain that anyone who has experienced or undergone the reality of cancer has been offended, angered, dumbfounded. I’m writing this because I can no longer remain silent, and because I want to take back my body. I hope that other BRCA carriers reading this will feel as I do. Moreover, I wanted to share something of my experience and the knowledge that I’ve gathered in the past year. These things happened to me, that I felt and thought; I don’t purport to describe anyone else’s experience except my own.

I’ll begin with the test itself. I don’t know the criteria for eligibility for the test; in my case, in light of my extended family history, I’m not certain that I’m a good example (the parameters in the US are not an indicator for eligibility here), but my referral to the Genetic Guidance Center was issued immediately, and was covered fully by my HMO, as are all subsequent tests, if I should choose to do them.

Let me raise two important points here: First, a number of parties, among them the genetic counselor, recommended that I take out a life insurance policy and extra health insurance before undergoing genetic testing. According to them, insurance companies will not agree to insure BRCA carriers. I wouldn’t be surprised if there isn’t a legal – if not an ethical – problem with that, , but I didn’t have the energy to look into it, so I just went ahead and purchased private insurance before being tested as I’d been advised, and before getting the results.

The second point is related to the no-less-obstructive obstacle of funding, and that is the bureaucracy. BRCA carriers must undergo at least six tests within a year, all in differing locales, and before each test obtaining the relevant referrals therefor. It’s a real production, and although there are dedicated clinics for carriers, they don’t alleviate the Byzantine bureaucracy whose hoops the patient must jump through. Here you are, already expending considerable psychic resources, and when you add to this the bureaucracy, I have no doubt that many BRCA carriers “drop out” of the system and possibly pay for it with their lives.

The carrier clinic to which I was assigned (or as they call it “high risk clinic”) offers an action plan overseen by an oncology supervisor who specializes in breast cancer. The plan tells you which test to do when: manual breast exam by a surgeon, breast sonogram, mammography, gynecological exam, vaginal ultrasound, and breast MRI. The last is considered a “bonus” for which carriers are eligible, and is believed especially effective in early detection. At the same time, it can be “too” effective, as there are false positives that can arise from certain breast structures.

Note that the carrier clinics do not offer emotional support, and when I asked the social worker if there was a support group there or anywhere, she replied that there is not, and referred me to the Cancer Society. It took time and more followup until I found Bracha, which was founded precisely for this purpose. We need a support network in the carriers clinics to help with patients’ emotional needs, which is no less important than running hither and yon getting tested. By the way, the Cancer Society does run support groups for those ill with cancer; but a carrier is not sick, and being a carrier and having cancer are completely different issues.

At no point, whether during genetic counseling, treatment at the clinic, or my own consultations with experts, was a mastectomy suggested, despite the fact that I knew of the option, and even raised it with the genetic counselor at the beginning of the process. Her response was that I just need monitoring, and she emphasized that there was no reason for “drastic steps”.

tumblr_lv2qdiXt9u1qawyaco1_500I thought, or wanted to believe, that the genetic counselor knew something that I didn’t know, and was pleased that there was no reason to draw extreme conclusions in what felt to me like an already never-ending nightmare. As the counselor recommended, I began to be monitored, I quit smoking, I cut my alcohol consumption to a minimum, and I began eating more healthfully.

Yet the more time that passed, the clearer it became to me that the genetic counselor did not have medical knowledge to back up her recommendations. In fact, I have an 87% chance of getting breast cancer; the women in my family got it at young ages; and in the same age bracket that I’m in; and they had aggressive types of cancer. A mastectomy, on the other hand, brings my odds of getting cancer down to less than 5%. If so, then on what information are the genetic counselor and physicians relying when they choose not to talk about the option of mastectomy?

Recently, the argument has been raised that mastectomy is a solution influenced by the patriarchal mindset and male-centered medicine. According to this argument, men assert ownership over women’s bodies and decide their fates for them. This view is functionalist: An organ that endangers the life of the organism should be removed; a womb no longer in use can be disposed of. Some claim that mastectomies are offered to women right and left, no pun intended.

I understand where they’re coming from, and partially agree; I’ll expand upon this later, but I must say that based on my experience, physicians are afraid, and don’t suggest the option of mastectomy precisely based on a patriarchal, conservative outlook that assumes a total superposition between a woman’s femaleness and her bodily organs, i.e., between a woman and her breasts. It follows, therefore, that mastectomy is perceived as vandalism or mutilation that does not “belong” to womanliness as they define it, thereby rendering such a step drastic, even provocative, and indubitably “hysterical”. Based on my experience reflected in the above-described mindset, “better a sick woman that a disfigured one”.

While I certainly don’t believe that the option of mastectomy should be placed on the table casually, or presented as the only option, I wish that physicians would view sexuality and women’s identities as more than just a pair of boobs, and include mastectomy along with all the other options. Give the patient a little credit: Present her with all the data, without feeling as if you’re leading her to the gallows.

The mastectomy option came back onto my radar not thanks to the medical community, but thanks to the documentary film hi amrá ‘ló’ leSartán [“She Said ‘No’ to Cancer”], and out of that nebulous thing we call “sisterhood”, i.e., solidarity among women. The film follows BRCA carrier socialite-cum-swimsuit model Kèren Nathanson, who decided to have her breasts removed. She Said ‘No’ to Cancer gave me more information than I’d received in all my doctors’ appointments put together, and I see Nathanson and the film as having saved mine and other women’s lives.

Subsequently, my new family physician raised the option of mastectomy, and told me straight out that if she were I, she’d have it done. Let me add that I don’t think it’s a coincidence that the only physician who mentioned this option was a lesbian. As far as I’m concerned, it was testimony to the fact that women of non-conventional sexuality might accordingly view my sexuality otherwise, and hence suggest things that others refrain from mentioning.

At that same appointment, I realized how important it was to surround myself with professionals who aren’t gender blind; to be careful of places wherein gender is invisible; and not to be afraid to ask the hard questions that raise eyebrows, such as “Suppose I want a mastectomy without reconstructive surgery? What will I look like?”

The moment I put mastectomy out there with oncologists, surgeons, and gynecologists, I was told – almost like a secret confession – that it was the wisest step I could take. And, being 40, they also advised me to have my uterus and ovaries removed. At the same time, I must emphasize as it was emphasized to me: The term “prophylactic mastectomy” is a misleading one, as this procedure does not guarantee that the patient will never get cancer, but rather significantly decreases her chances thereof.

Even after undergoing mastectomy, and certainly if the patient opts for nipple reconstruction, cancer-prone mammary tissue still remains, if not in the breast then in the ovary, and if not in the ovary then in the large intestine, and so on and so forth. While it’s true that the odds of getting cancer drop – and post-amputation they drop to below average – as long as you’re alive, they never drop to zero.

So why do it? Because I live in fear day in and day out, a fear borne out by my not-so-great genes and by my personal memories. And because the minute a growth is detected in my body, no matter how small, I’ll have to undergo a full mastectomy anyway, in addition to aggressive chemotherapy, in order not to take any chances.

Case24item2When I recall those years that my mother lived through wasting away — not from cancer, but rather from treatments — I know what the right decision is for me. And also because on good days, when I think of how much I have to look forward to, it feels like the right decision. At the same time, I can understand any other decision: Each woman has her own fears and her own cost-benefit calculations to make. But every woman is entitled to full information.

And for those who view mastectomy as an opportunity to get a nice, indestructible rack, I hope they never have to have any body parts removed, God forbid it will mar their appearance. To my mind, only two things could cause a person to do such a thing to his or her body: insanity; or over-the-top bravado and joie de vivre.

Finally, I’ll return to the gender issue. Recently there’s been a lot of talk about increased awareness of and incidence of breast cancer, and the irrational fear of it among women. An important article on the subject appeared in the New York Times headlined “Our Feel-Good War on Breast Cancer” by Peggy Orenstein. In it, Orenstein identifies more than a few economic interests behind the monstrosity referred to as the “pink industry” that has sprung up around breast cancer. Here too, the taking possession of, the overseeing, and the control over the female body stems not from concern for its health, but rather from an attempt to profit from it and at its expense.

Yet it’s important to distinguish between “regular” women and those who are BRCA carriers. The monitoring of the latters’ bodies does not stem from economic considerations, but rather from the bodies themselves and their genetics. Carriers’ fears don’t need igniting / compounding by media campaigns or pink trucks. They need look no further than their own families, and they certainly wish for a different reality for their daughters.

One could claim that it’s male-centered medicine at the outset that made the BRCA gene visible, and that it’s patriarchy that has rendered the option of mastectomy even thinkable. Perhaps it was indeed male-centered medicine that defined me as a BRCA carrier, and that brought me to where I am today, while in a perfect world, I wouldn’t even need to know I was a carrier. I wouldn’t even know that I could know. In a perfect world, death would come on its own, without “down payments” and years of living in fear. One day, I’d simply be gone. Nice thought.

But I see it differently: As far as I’m concerned, the option of mastectomy, whether it’s a consequence of patriarchy or not, grants me the power to make a decision about my body and my fate to an extent that my mother and others unfortunately didn’t have, and for which it’s hard to find an analogous male scenario. I’m taking possession so as to eliminate possession itself, if you will. And as one whose breasts are dear to her yet don’t define her, I definitely don’t feel like a victim of patriarchy.

But all these words feel so far away from where I sit. The bottom line is that I’ve had it with my fear being grounded; I’d rather it was groundless, and that, as I’ve mentioned, looms far larger than any numbers ever could.

This post originally appeared in Hebrew on Haokets.

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