Guest Post: Gene Positive Status is Not a Life Sentence

4 02 2010

Editor’s Note: The first email I opened this morning was from across the pond, written by a young woman who had just received news of her BRCA 2 positive status. Her words are so poignant, so valuable, that I wrote to her immediately and asked if I could share them as a Guest Post. With Natalie’s blessing, here they are:

by Natalie

I received the results of my test today – and I carry the BRCA2 gene. I guess I knew I did, although until this morning I still lived with that tension between being resigned to the fact that I probably did have the gene, and that secret, guilty hope that I might not. The probability having been 50/50, I always had that image of a coin flipping, or Schrodinger’s cat, and imagined myself getting either the good, or bad, news, and my two very different reactions.

I’m 29, my mother first got cancer when I was 11 (when she was 39), so the time for me to start the process of preventative treatment is now. I’m British and I live and work in Spain, and the one thing that shocks me, culturally, reading the posts on this blog, is the additional stress that these women have to go through regarding what the insurance will or will not pay for. Obviously health care is free in the UK and Spain and my mother, having had three separate cancers, is still alive, happy and strong and has never had to pay a single penny.

I also just happen to work as a researcher in a medical anthropology department and plan on writing a paper on the differences that my sister and I have encountered in the Spanish and British genetic testing services (genetic counselling is obligatory in the UK, whereas it is not offered here in Spain).

I plan to make further posts in the future and I’d be interested to hear about other peoples experiences of genetic testing etc.

Like my doctor said today, this is not a life sentence. There are actions we can take, and it is not the end of the world.

After writing this post, I’m starting to feel better already.

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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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