Sunday, March 29, 2015

The one where I can actually compare myself to Angelina Jolie

Remember a few years ago when the interwebs were in an uproar when they found out that Angelina Jolie had a preventative double-mastectomy? And how they erupted again recently when they found out she had her ovaries and Fallopian tubes removes? Seriously, there was even a Buzzfeed article about it. (You know it's a hot topic when Buzzfeed covers it - http://www.buzzfeed.com/carolynkylstra/brca-genes-and-cancer)

As you might have heard, Angelina Jolie carries the BRCA1 gene. So do I. Because of this genetic marker we are predisposed to getting breast cancer at early ages and it reoccurring later on as ovarian cancer. (Guys, this is the one and only time in my life where I will legitimately be able to compare myself to Angelina so I'm going to go ahead and do that. Because I can. Finally.)

 


A few people have asked me how I feel about Ms. Jolie's op-ed pieces discussing her very personal and monumental life choices. Have I read the articles? Do they bother me? And so on...

I have read the pieces. No, they do not bother me. Honestly, I am so pleased that each time she has had a major procedure related to her BRCA1 genes, she has made sure that the public is informed of her "why". Women need to know about these things to be better informed and to have appropriate conversations with their doctors. She has the fame and the power to make these things newsworthy. Her voice is a much more powerful vehicle than mine. I can tell all of my friends and family about breast self exams and talking with their doctors -- but she can capture the attention of a nation. Good for her for recognizing that and doing something about it.

For some folks I'm sure it seems extreme to have a double-mastectomy followed by having your ovaries and Fallopian tubes removed as preventative measures. I mean, a double-mastectomy is an amputation which is a big deal. (Just because it's not an arm or a leg, doesn't mean it's not an amputation.) Removing your ovaries means no more babies and bringing on menopause. A BIG DEAL. A big deal based on statistics. A chance that you test positive for the BRCA1 gene. Then more percentages about your likelihood of getting breast cancer. Then even more statistics about the likelihood of the cancer reoccurring in your ovaries. But remember, we're talking about cancer. How comfortable would you be gambling on CANCER? I gambled in my 20's and lost.

The difference between Angelina Jolie and myself (as if there was just one) is that she has the financial freedom to make these decisions with, I'm guessing, no real monetary repercussions. I knew the same facts as her and did not make the same decisions. I knew that I could test positive for the BRCA1 gene, but in my early 20's with a young family, couldn't justify the cost of the genetic testing. (If your insurance doesn't cover the cost, just plan on paying an amount that could get up to $4,000.) I couldn't justify the time off work or the cost of a double-mastectomy and the reconstructive surgery that would follow. Unfortunately, the harsh reality for most women in this situation is that money is a factor in their decision-making.

Also, I need to be honest here and tell you that there's more to the story than money. I couldn't handle losing parts of my body on a chance. It scared me. I thought I would be less of a woman. Less me. Right, wrong, or somewhere in between - I made the decision to wait and see what happened. I gambled on the odds falling in my favor and it didn't quite work out the way I hoped. The lesson I learned here is that I will still never judge a woman's decision because it's her call and I can clearly understand both sides of that coin. Probably more clearly than most.

So what does all of this mean? What is the point of this post? The point is - - ladies need to be aware of their family medical history. They need to be informed. They need to have difficult conversations with their doctors. They need to do self exams regularly. No matter what decision they make - - they simply need to be aware. Thanks to our fascination with famous folks, woman like Angelina Jolie can bring these conversations to the masses and can get websites like Buzzfeed (who appeal to a younger demographic) posting information about BRCA1 genes.

Also, did you really think I would post without my standard #CheckYourself message? Next time you go to the doctor, see if they have these available. Take one home. Use it.

 

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