Friday, November 1, 2013

When fear leads to freedom: facing a high risk for breast cancer.

I know you've all seen them - those inspirational quotes about fear, that we all love to post and tweet and share to lift ourselves and other people up. About how fear is our enemy, the quicksand that sucks at our legs to keep us from pulling free into achievement and triumph. And if we're talking about a fear of failure holding us back from trying something new and brave, then of course. Yes. It's all true.

But there is another side to fear, which I have been thinking a lot about recently.

Ever since I was twelve years old, I have been afraid of my own body. My mother died of breast cancer when I was thirteen. My mother's mother had also had the disease as a young woman, although in her case she survived it. And before I ever knew anything about the cancer-causing gene mutations that have been discovered since my mother's death, I knew there was often a familial link.

The other thing I knew is that my mother seemed to have somehow provided me with more than her fair share of her own genetic material. We have the same coloring, same height, same build, same eyes, same freckles. Same smile. Even the same maddeningly high-maintenance prematurely gray hair (I haven't been a natural brunette since about 2003). I once asked my aunt, her sister, whether I resembled my father at all; her response was, "Not a bit. I've always thought she just cloned herself."

So I have always believed, with a fear too strong for reason, that she had given me her cancer as well. For more than 20 years, I have regarded my breasts as ticking time bombs, just sitting there on my chest slowly growing something that would eventually harm me. The fact that at age 71 my aunt, too, developed the cancer only served to confirm my conviction.

When I tested negative for the BRCA mutations three years ago, the genetic counselor assured me that with that result, I had no reason to pursue the preventative mastectomy I had been considering (now forever known as the Angelina Jolie Thing). We would do aggressive screening, and I would take a five-year course of Tamoxifen, a drug with excellent results at controlling existing breast cancers and preventing new ones. "This isn't your mother's situation," the counselor told me. "We have much better screening technology, we are catching these cancers earlier and earlier, and they are very treatable." I made my decision, and elected not to pursue a destructive and psychologically damaging surgery out of fear.

And then, this week, I noticed a little lump. I pointed it out to my doctor, expecting her to tell me it was just normal tissue, but instead she frowned and said, "I see what you're talking about. Let's get you checked out." And with those words, I plunged right back into the terror that's shadowed me for most of my life, except this time, it wasn't a hypothetical - I had actually found something in my breast that didn't feel right. My friends immediately reminded me that almost all breast lumps turn out to be nothing; but my panic just screamed back that for the women in my family, the lumps have never been nothing.

And then my brain started with the guessing. How big was it? How long had it really been there? Could it have been there early this year, somehow undetectable in my baseline mammogram and sonogram that had both come back normal?

Because the thing that makes cancer so uniquely terrifying is that the length of time it has existed in your body is directly correlated to the likelihood it will kill you. Whether or not it has had the opportunity to spread beyond its point of origin - that question is literally everything. It might mean chemo. It might mean worse.

To my indescribable relief, the lump was nothing. But I was prepared for the very real possibility that it might not have been. And I am equally prepared for the fact that next time, it might not be.

And what I realized is, I don't know if I can take the chance. I fully understand my doctors' hesitation to have me undergo a major surgery, exposing myself to pain and the possibility of infection or complications, over fear of a threat that may never materialize. Or that, if it does materialize, can be effectively dealt with.

But what my doctors can never understand is what it is like to live with this fear. Cancer is not an abstract concept to me; I have seen it. I watched my mother's horrific suffering, her pain, her fear. Her loss of another half-lifetime's worth of memories and love and joy. As an adult, I understand now the shattering grief she must have felt, knowing she would have to say goodbye to me and my father and everyone else who was precious to her. I felt it when I fell asleep next to my husband the night before my tests, thinking, "what if there were a time when we knew we only had a few weeks together left? How could we bear that agony?"

So. I had decided against the surgery, but I think I may have to consider it again. Counter-intuitive though it may seem, I was actually disappointed by my negative BRCA result; if I'd tested positive, then I would have known my prognosis, and what to do to protect myself. Instead I am still walking in the dark. But common sense and the medical community agree that there are likely other genetic factors, still undiscovered, which may account for strong incidence of the cancer in BRCA-negative families.

It feels like sunshine, the thought of being able to face my future without the fear of this disease. Without the fear that I might someday regret not having had the tissue removed before it became dangerous. The fear that even with my screening regimen, something might get enough of a foothold in my body to kill me. I'd be making a decision out of fear, yes, but with the goal of eliminating that fear for the rest of my life. And there's something freeing in that, after all.

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