There’s Still Cause for Celebration

3 03 2011

Fireworks are one of my favorite sights in all the world. Photograph Courtesy of Smashing Magazine.

Today would have marked my five-year, cancer-free anniversary.

What that means is that five years ago today was the last time that any cancer was found in my body, not the last time I underwent treatment.

I was diagnosed with breast cancer on March 3, 2006 following a lumpectomy to remove what the doctors suspected was breast cancer. Indeed it was, though thankfully, only a Stage 1, the size of a blueberry, completely contained, no lymph node involvement.

Chance of being cured at that moment in time? 98 to 99 percent – particularly if I underwent a double mastectomy, four rounds of “just in case” chemotherapy, and an oophorectomy. Which I did. And it worked.

At least until the defective BRCA 1 gene I carry refired in the smallest bit of leftover, healthy, microscopic breast tissue, causing the tumor that wedged itself between my left breast implant and my reconstructed, “fake” nipple. That’s what grew into the grape-sized tumor that I detected on January 9, 2011, quite by accident.

Don, Theo and I had been out back, ice-skating on the lake. We came in when our ears were burning from the cold, our skate blades dull. I flopped on our couch and pulled up a blanket to warm myself. And that’s when it happened.

I brushed my forearm over my left breast as I was pulling that blanket up and over my chest when I felt it. A weird, marble-hard sensation through the sweatshirt I was wearing. I reached down under my sweatshirt and felt it again. Then I called Don over. He felt it. “Was this there before?” I asked him.

“No,” he said.

And just like that, we were thrust into this latest diagnosis, Stage 4 breast cancer. Just like that, our world was turned upside-down. Again.

Don and I, along with all of our friends and family, had been ticking off the days, weeks, months, years to that five-year, cancer-free date that would have been today. It wasn’t to be.

But that doesn’t mean today is not cause for celebration. I may not be cancer-free, but I am still here. I am still a Survivor! And a five-year Survivor at that!

Tonight, I will celebrate with the members of my girls’ group, the Six Pack, at Famous Dave’s BBQ. If you happen to be at Famous Dave’s tonight, look for me.

You’ll know me when you see me. I streaked my blonde hair Breast Cancer Pink — actually, fuschia — this morning.

Copyright 2011, Amy Rauch Neilson

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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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