A Flower or a Weed?

18 06 2009
For gene-positive women, the ovaries are both flowers...and weeds.

For gene-positive women, the ovaries are both flowers...and weeds.

Like many three-year-olds, when the fields of early spring are blanketed in golden yellow, Theo squeals in delight. He sees dandelions as “flowers,” and often picks Mommy a bouquet.

As grown-ups, most of us think of dandelions as weeds — undesirable. We spend time, money and energy attempting to irradicate them from our lawns.

But are dandelions a weed, or are they a flower? It depends, of course, on your perspective.

The same can be said of the ovaries of a woman who carries the BRCA 1 mutation. Her positive status not only predicts an 88 percent lifetime chance of getting breast cancer, but a 44 percent lifetime chance of an ovarian cancer diagnosis.

If she views her ovaries as what God intended them to be — the first stop in a chain reaction of events that brings about the conception of a miracle, a newborn baby — then they are flowers. If she sees them as the malevolent precursor to ovarian cancer — a cancer that is not only difficult to diagnose in its early stages, but difficult to treat — then she will view them as weeds.

Either way, it’s a clear view, all the way to the horizon. But what happens when to that young woman, that BRCA 1 carrier, the dandelions are both flowers and weeds?

That’s the predicament I find myself in. As I believe John Lennon once said, life is what happens while we’re busy making other plans. And so it was for my husband, Don, and I. Our “plan” was to have two children, about two years apart.

Part A of that plan went beautifully — Theo was born in August 2005. But Part B was put on hold when I was diagnosed with breast cancer in February 2006.

There were lots of “ifs” at that point in my life — but I am a strong believer that looking forward and making plans is the best perspective you can have when you’re in the midst of dire circumstances.

So, we looked toward the future and saw ourselves with two children. I went through in-vitro in the weeks between my double-mastectomy surgery and the first round of chemotherapy so that we could freeze embryos in case the chemo sent me into premature menopause.

I’m now a survivor — three years, three months, two weeks and one day — and you can bet I’m counting! And Don and I have decided to go for #2. If we are blessed with a second baby, fabulous. If we are not, we will move on in life, grateful for the beautiful, healthy little boy that we do have.

In the meantime, in the back of my mind, I am always aware that, as long as I have my ovaries, I am playing a game of Russian Roulette. The odds of ovarian cancer in a BRCA 1 positive woman increase dramatically as a woman moves into her mid-40s and beyond.

Though I am not there yet, I know that my risk is about 1 percent. That’s pretty low, but any risk is still a risk. A risk of cancer, a risk of leaving my beautiful little boy and loving husband behind. And that’s just plain scary.

Yet, as we’re too often reminded, everything in life carries with it some sort of risk. We get into a car and drive to the store, and we take a risk. So, we will play the odds for now, try for #2, see what happens. And, if it doesn’t happen in the next several months to a year or so, we’ll move on.

Moving on for me means going under the knife and having my ovaries removed. That’s the best way for a BRCA 1 carrier to eradicate her risk of gene-related ovarian cancer.

It means changing my perspective, of no longer viewing my ovaries as flowers, but instead, as weeds. And, like many of the decisions I must make as a BRCA 1 positive woman, it won’t be easy. But, I will summon the courage, do what needs to be done, and move on — thankful that I’m able to participate in this beautiful dance called Life.

Guest Blog: BRCA2 and Don’t Know What to Do

10 06 2009
Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Please meet Jenny Fink, a BRCA 2 carrier, who pens Blogging ‘Bout Boys. (Check it out — I’m guest blogging over there tomorrow.)

Breast cancer has haunted me my entire life.

From the time I was little, I knew that breast cancer stalked my family. My maternal grandmother died of breast cancer when I was just five, and one of my maternal aunts had breast cancer sometime when I was a kid. I don’t remember the details, but I do remember my mom ducking into the bathroom to see her scar.

My own mother didn’t develop breast cancer until I was an adult, a married twenty-something living out-of-state. Still, I remember seeing my mother’s mastected breast, dyed green and slice for analysis. It’s not the kind of thing you forget. (My mother, a nurse, specifically asked to see the samples, and I was in the room when they wheeled them in.)

It wasn’t until she was diagnosed with ovarian cancer ten years later that we learned about our genetic mutation. Despite the fact that we knew we were at risk for breast cancer, no one had ever bothered to inform us that ovarian cancer is sometimes linked to hereditary breast cancer.

When we learned about the link between breast and ovarian cancer, I pushed for genetic testing. I’d had enough of health care professionals pushing my concerns under the rug. If I tested positive, I reasoned, I’d have absolute, solid proof of my risk status – and no one could ever again brush off my concerns by saying, “Yes, but has your sister had breast cancer?”

That was a little over two years ago. Finding out I had a BRCA2 mutation was really no big deal; strange as it may sound, for me, the bigger deal would have been finding out I was negative.

Doing something about it has proved to be a little harder.

First, I was nursing. My youngest child was not yet a year, and I was determined to breastfeed him to completion. Continued breastfeeding, I reasoned, was best for both of us.

Now, though, he’s been weaned for the better part of year. It’s time to schedule a screening, but our health insurance recently changed from full coverage to a high deductible ($5,000!) policy. I’d scheduled an appointment at the regional academic medical center to discuss screening and my options, but cancelled it when I realized I’d be paying out of pocket. My plan now is to wait til my annual physical (covered at 100%) and to ask my family doc to recommend a mammogram (which, I think, should also be covered.) As for the MRI I should probably have – well, I’m not sure how I’m going to pay for that just yet.

My situation is not unique. How many of you have a mutation, but limited insurance coverage?

I’m not sure yet what I’ll do regarding prevention; if I’ll try Tamoxifen (though I recently learned that some antidepressants basically disable Tamoxifen) or if I’ll schedule preventive surgery. The scary thing is that I’ve already calculated that surgery may be the cheaper route: if I decide on a prophylactic mastectomy and oophorectomy, I’m pretty sure I’ll meet my $5,000 deductible. If I simply decide to do screening each year… each year, I’ll have to pay $1,500 out-of-pocket for an MRI.

How do you cope financially? Has insurance coverage (or lack of coverage) influenced your healthcare choices?

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