Friday, June 4, 2010

On the Origin and Nature of Fear

Yesterday, I began reading an advance copy of a new BRCA book that's due out this fall. It's called Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decision and it'll be available in October. But because I'm special (and because of this here blog I gots), I received an ARC (industry shorthand for advanced reading copy, or as we call them at the publshing house where I work, galleys) from Random House and dove right in.

Previvors is part-guidebook, part personal stories. It follows five women who navigate the repercussions of being at high-risk for breast cancer. Three of the five women are BRCA positive; two are not. All five chose the same path to reducing their risk: prophylactic surgery (although several spend years, and in one case, even decades, undergoing surveillance). Their stories supplement the very practical advice and scientifically sound research laid out by the book's author, Dina Roth Port (whom I had the pleasure of meeting at last year's FORCE conference and who is, according to LinkedIn, an alumna of the very same journalism school I attended. Go cats!). So far, I'm enjoying it very much.

(Pause to say I will have a full review of this book when I've finished reading it, and I owe several authors and publishers reviews on other BRCA books I have sitting on my nightstand, which I promise I have not forgotten.)

I'm only about 100 pages in, but something on page 7 gave me pause, and I wanted to explore the issue further here. Chapter two of Previvors is called "Living in Fear," and it contains a number of thought-provoking statements. For instance, Port writes "All diseases are scary, but for some reason breast cancer packs a particular punch. In fact, one survey showed that women fear this illness more than any other, even though cardiovascular disease claims more than ten times as many women's lives each year." This is a statement which with I can completely agree, and I'm sure many of you feel the same way. I spend nary a second thinking about my heart (which I presume, due to my assiduous diet and stringent exercise regimen, to be in tip-top shape), but even before I knew I was high-risk, I knew enough to be scared of breast cancer. Which is what makes the next statement so thought provoking. Roth writes, "Fear of breast cancer don't just appear out of thin air. It stems from a source; there's a definitive point in time when it all begins. For some, that might be something as innocuous as reading a magazine story about a women who battled the disease. For others, it's often watching a loved one actually suffer to the end with it." I read that and thought, huh, where did my fear come from? Where did this fear -- an emotion so strong I decided to preemptively remove the very body parts that may at some point try to harm me -- stem from? The truth is, I'm not exactly sure.

As I've written many times, I did not grow up around breast cancer. It did not affect my life or my perspective of my future health or mortality. My grandmother had it when I was a child, but it was dealt with as a non-event, and she survived for two decades after beating it. (She was not a BRCA carrier; I inherited my mutation from her husband, my grandfather.) I did not learn to fear breast cancer from watching my grandmother. And since the BRCA mutation was passed to me from two generations of men, breast cancer did not manifest itself in anyone else. Therefore, it wasn't by watching anyone suffer that I learned to fear breast cancer. So how did I learn fear?

It could be that I learned to fear breast cancer when, at age 27, I found a lump in my right breast. But I was assured by doctors it was nothing to be concerned about and, indeed, it eventually disappeared as suddenly and mysterious as it had appeared. (I was also told I was too young to have breast cancer and that I should begin routine mammograms at age 40 and simply put the whole event out of my mind. Funny how things can take such a sharp U-turn so quickly...)

In truth, I think I learned to fear breast cancer the minute I learned I was likely to get it. In other words, I wasn't scared of breast cancer until I understood there was a genetic mutation in my bloodline that conferred an astronomical risk of developing the disease. The moment breast cancer ceased being abstract and became concrete, that's when I felt that tightness in my chest, that acidic discomfort in my stomach, that cold sweat on my palms and feet. But to be specific, the fear really kicked into high gear when I got my results of my BRCAnalysis; I have never been more scared of anything in my life.

For some people, learning their risk (which will likely cause fear of the unknown and uncontrollable) when they have lived a life relatively removed from that anxiety is not worth it. So why did I chose to learn my risk and subject myself to a life clouded -- at least temporarily -- by fear and anxiety? I guess the short answer is that in this case, what I didn't know might have hurt me. I could be living a completely different life right now if I hadn't taken that genetic test last April. I'd still have my natural breasts, I'd probably be jogging along the lakefront on this humid evening rather than typing a blog entry, and breast cancer would still just be something that happens to someone else. But that alterna-Steph would still be BRCA positive; the difference is, she wouldn't know. Despite the fear engendered by learning my risk, I'd much rather be safe than sorry.

Fear has been very much on my mind today. I've been exchanging emails with a woman who recently tested positive for the BRCA2 mutation and she's paralyzed by fear. She's scared of surgery and scared of cancer. And it's funny because the advice I gave her is very much coming from someone who is still afraid (or at least aware of the fearfulness that it raises in me) of breast cancer. I told her that cancer is scary, that chemo is scary, that fear of reoccurrance or metastasis is scary. But surgery is not. And yet, long time readers know how scared I was of surgery, how convinced I was I would suffer some unseen complication under anesthesia and never wake up. My fear was specific; I was never scared of pain or what my body would look like after. I was just scared of doing something to ostensibly prolong my life and instead accidentally end it. But that fear was very real to me, just as the fears this woman is experiencing. In my case, my fear of an unknown and unknowable diseases motivated me to make a decision; in other cases, fear can debilitating.

Fear, I think, is inescapable. Whether you've witnessed the ravaging effects of cancer claim a loved one or if you've only experienced it from afar, breast cancer is a terrifying disease. It touches the parts of us that make us women, that make us nurturers, that make us attractive; it's indelibly linked to many aspects of femininity and self-worth. Breast cancer is scary, and no matter how its shadow has darkened your world, no matter the event that triggers it, what we as BRCA mutation carriers must face is scary. Inaction is scary, but action is equally so. Yet we manage our risk in such a way to make fear is manageable. For me, that meant having surgery, despite my fears of anesthesia.

This is a community bonded by fear. And yet, as the women in Roth's book show, we are also a community with a rare choice to escape that fear. I told the woman I exchanged emails with today (and have written here before) that when I had my mastectomy, sure I lost my breasts, but I also had all that fear and anxiety removed too. It's funny; I may not be able to pinpoint the genesis of my fear, but I sure as hell remember when I stopped being scared. That was the moment I woke up from surgery and realized I'd done something irreversible to reduce my risk. And I haven't had a moment of fear since.


  1. I've thought a lot about the fear issue, as well, because I don't know exactly where my fear of the disease stems from, either. Yes, my mother had breast cancer, but... it wasn't that bad. She never complained, never felt honestly all that sick from the chemo, and refers to it now as a sort of "yeah, whatever, it wasn't great but wasn't that bad" time in her life. Seeing my mom go through it showed me that you can get cancer and still be okay, rather than causing me to fear it. That said, it is still something that hangs over my head because of this stupid gene mutation.

    Sometimes, the fear has manifested itself as more of a fear of surgery/making a choice than a fear of cancer itself. It is inescapable but I hope that someday, when I do go through surgery myself, I'll have the same lack of fear you talk about.

  2. I just wanna say thank you for this blog...I've been going through alot of "self reflection" lately (results of BRCA1 positive in May) and knowing that I'm not alone in this sisterhood is reassuring.

  3. Regarding the fear thing...I've noticed that, that many women fear breast cancer more than heart disease. Despite having a deleterious BRCA1 mutation, though, I can emphatically say that is not true for me. I know from all my numbers (cholesterol, BP, heart rate) and my lifestyle that my heart is in good shape, but heart disease is so insidious -- it kills so many people, including 3 of my 4 grandparents (including the one who had breast cancer), and my 4th grandparent died of a stroke, though she had a pacemaker for 20 years. Even my parents, who are both marathoners and careful eaters, are on a few medications to control cholesterol and blood pressure because lifestyle just isn't enough to bring those numbers down to "normal" levels. If you die of cancer, at least there's time to say goodbye. If you die of heart disease or related cardiovascular problems, it can often happen suddenly and unexpectedly. Also, more so than cancer, it can contribute greatly to cognitive decline.

    I'm aware of cancer, and sure, I'm afraid of it. However, in my personal case, that kind of urgent, gut-wrenching fear seems to be directed more to cardiovascular disease. Sometimes it comes up regarding cancer, but even then it seems to be more for ovarian cancer than breast cancer. Sometimes I worry that I'm not as scared of breast cancer as I "should" be given my BRCA status. I wonder if this is why I don't really have that much of a problem with the idea of sticking with surveillance. Given my family history, I'll probably get a BPM in the next few years, but I rarely feel urgency.

    I wonder, too, where this fear of breast cancer comes from. I wonder if part of it is that it is seen as less controllable, that if you get it that it is somehow less your own "fault" than if you get heart disease (though my family history shows clearly that heart disease is much less a "personal failing" issue than we've been led to believe by the media). We're taught to see it as more of a "cause and effect."

    Anyway, thank you for this blog. It is certainly a lot to think about. I'll be sure to check out the book when it comes out later this year.

  4. Thanks for the responses. I'm glad to hear this is provoking thought in others. K, it's so fascinating to hear your story. It sounds like even though your mom had cancer, it wasn't the trigger for your fear. Kind of like me and my grandmother. Mymutantlife also brings up some good points. First off, I didn't want to come off sounding callous about cardiovascular risk; I do however, think of it differently than I do BC mostly because I hope with a healthy lifestyle I'll be able to avoid heart troubles down the road. (Whereas with BC, I never felt like my lifestyle choices were ever going to be enough to surmount my genetic predisposition to the illness.) There's some part of me that thinks, well, if I honestly do my best to live healthfully and cardiovascular disease does affect me, I've done the best I could. One of my friends from high school's father is about as fit a guy as I ever knew -- biked 40 miles a day to work, ran marathons -- and then in his early sixties, had a massive heart attack. He survived, but that is definitely a scary prospect. Some part of me tries not to dwell on things I can't control (which is why I dwelled on breast cancer -- because I COULD control it if I chose). I definitely have other health fears. For whatever reason, I've always been scared of cerebral aneurysms (probably because when I was in middle school, a student a grade or two below me almost died from one). But I don't walk around thinking, oh no, any minute now, a vein in my brain is going to burst and it's curtains for me. If I did that, I'd drive myself crazy. I guess it comes down to control. For whatever reason, I feared breast cancer more when I knew I had to make a decision about how I could control it. But I can't fear the stuff I have no control over. Anyway, I'm rambling, but this is a fascinating discussion. Cheers, Steph

  5. Fear is clearly a motivator in our community. One woman I interviewed for Positive Results said "I fear losing my breasts more than I fear breast cancer." It is when the reverse of this statement becomes true that many of us move to considering surgical prevention, even in the face of fear of the surgery itself.


  6. Steph, thank you for this blog post. I personally chose surveillance as long as possible. However, there came a time when I hit my threshold level of dealing with fear and chose to do something about it. Thanks for starting this discussion based on our book, Previvors.

  7. This is another amazing post, and I want to thank you from the bottom of my heart for all your help and insight. I have always feared breast cancer more than heart disease and many have died of that in my family, including my father. I think it stems from watching my aunt battle BC while I as a teenager, she did not survive. My mom has battled it, and now my young 32 year old cousin,(who is the daughter of the aunt I lost) is facing surgery, radiation, and chemo. My BRCA diagnois has just added to the fear that has always been there. Still I am SO scared of the surgery....but I want this fear to go away......and what I love to hear is that along with your breasts being removed so was your fear and anxiety...that is what I need to focus on while I contemplate my surgery. I hope you keep writing your blogs because they are brillant!