Bright Pink

as many of you know - October is Breast Cancer Awareness Month - unfortunately this hits close to home for my family and I - i'm a big support of the organization Bright Pink - and the founder Lindsay Avner was just featured in Women's Health - check out her story:

Lindsay Avner - Founder of BrightPink.org

The ACTION HERO

Lindsay Avner, founder and CEO of Bright Pink, a nonprofit that focuses on the prevention and early detection of breast and ovarian cancers in young women and provides support to high-risk individuals. Started in 2007, Bright Pink has eight national chapters and over 50,000 members


Women who carry the BRCA gene mutation have up to an 87 percent risk of developing breast cancer and up to a 44 percent risk of getting ovarian cancer by age 70. (Women who don't carry the DNA but have a strong family history are also at a high breast-cancer risk.) The stats seem scary, but as Lindsay Avner tells it, knowing your risk level—and understanding your choices—can be surprisingly empowering.

As told to WH by Lindsay Avner
My grandmother and great-grandmother died a week apart. Breast cancer took them both, when they were 39 and 58, respectively. I never knew them, but I know their struggle: When I was 12, I watched my mom battle breast cancer and, soon after, ovarian cancer. She survived but, all told, 11 women on my mother's side of the family have lost their lives to one of these diseases.

I was convinced I wouldn't be like them. I was built more like my dad, all skinny arms and legs; surely, my health would take after his. So in the summer of 2005, when my mother told me her cancers were genetic, that she carried the BRCA1 gene mutation and that I had a 50-50 chance of carrying it too, I thought I would test negative. I didn't.
After I got my results, I cried for weeks and weeks. I eventually landed in the ER when my colon started spasming from stress. Some experts say finding out you carry the BRCA mutation can be just as devastating as finding out you have cancer. They may be right.

At first, I regretted ever walking down the path of risk assessment. I was single, starting a new job in a new city, and suddenly navigating what it means to live at high risk. I enrolled in an early detection program that included mammograms, ultrasounds, clinical exams, and blood tests every six months. Though I was technically healthy, getting poked and prodded so often made me feel like something was already wrong, like I was just waiting to get cancer instead of reducing my chances of developing it.

In August 2006, when I was 23 years old, I became, per my doctors, the youngest woman in the country to get a risk-reducing double mastectomy and nipple-sparing reconstruction. Scientifically, it made a ton of sense: My odds of developing breast cancer fell to less than 1 percent. Emotionally, I was terrified I'd feel broken, tainted, like less of a woman, that the guys I'd date might not see me as whole. But after the surgery, I surprised myself by feeling healthy and strong. I found a new kind of beauty inside me I never knew existed. I grew to consider my scars cool; the two small lines on the outer quadrants of my breasts tell one hell of a story. The first time my shirt came off with a new boyfriend, my eyes filled with tears when he looked at my chest and simply said, "They're perfect."

Six years have passed, but my fight against cancer is far from over. I began my twenties by removing my breasts and now, as I approach 30, I am starting to prepare for another surgery. Because there are no good tests for ovarian cancer, which is deadly and can strike young in BRCA carriers, my doctors recommend I have ovary-removing surgery at age 35, by 40 at the latest. The procedure would push me into menopause, something most women don't experience until they're around 50. Hot flashes, insomnia, low sex drive—not how I'd envisioned my thirties.

As I think about this next step, those old concerns about my femininity are beginning to resurface. But here's my deeper worry: I'm single, and if I don't have kids in the next few years, I might not be able to have them naturally at all. The question every woman asks herself on a first or second date—could he be The One?--has taken on new meaning. In my head, the follow-ups unroll: Does he want kids soon . . . like, really soon? How can I tell if he'd be a great dad? How would he feel about embryo freezing?

That last question is the trickiest, but it's also a reminder that I do have options. Even if I don't find the right guy soon, I can still try to preserve my fertility. I could get a sperm donor and freeze a collection of embryos or, thanks to advances in egg freezing, I could have my eggs put on ice, to be thawed and used after ovary removal surgery. (Both require in vitro fertilization, for me or a surrogate, and it's now possible to test for BRCA mutations in embryos.)

If this seems like a lot to handle, it is. I'd be lying if I said I wasn't scared and overwhelmed by the thought of another surgery; by the pressure to find my soul mate and have kids sooner rather than later; by the shots, weight gain, and expenses associated with egg retrieval. But I know something that's way scarier: developing ovarian cancer. As I grapple with this, I'm keeping in mind that, for me, being proactive is better than being reactive, that prevention is better than treatment.

Every woman has a choice of finding out whether she's at high risk for breast or ovarian cancer. In my case, while it's sometimes hard to predict how I will feel at each milestone of this, I know that I am fortunate to have something generations of women before me did not--the ability to do something about my chances. More than anything, I know what I want for myself and for the daughter I hope to have someday: a long, healthy, cancer-free life.


If you would like to donate to BrightPink and help other women who are battling breast/ovarian cancer or are high-risk at developing the cancers - please click HERE to do so - also if you would like more information about this organization and their buddy programs and so forth - please let me know - i'd be more then happy to chat and educate you or someone you may love!


*for all those we have lost, the ones fighting, and the ones just getting the news - my heart*


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10 comments:

  1. Great post. Always important to remember these great organizations.

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  2. Awesome cause, darling.
    Very touching story.

    xoxox,
    CC

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  3. Such a wonderful cause and I remember her story. I forgot the name of her organization though. Thanks for letting me know. I lost my best friend and some family members to breast cancer and I always give.

    xoxo

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  4. I was just watching the reality series; Guiliana and Bill and Guiliana was sharing her story with an audience. It was so touching. This is a very important cause and I know it's very close and dear to your heart. You've been an inspiration! You're definitely a fighter and always and always so positive. I love that about you:-). XX

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  5. Wow. I know her story is so closely related to yours Erika. I watered up at her taking her shirt off and feeling vulnerable, to receiving the perfect response: "They're beautiful." LOVE that. xo

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  6. Wow. I know her story is so closely related to yours Erika. I watered up at her taking her shirt off and feeling vulnerable, to receiving the perfect response: "They're beautiful." LOVE that. xo

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  7. Erika,

    This is such an amazing story. I can't imagine the sadness and vulnerability that one feels after going through such an ordeal. If the chemotherapy and surgery isn't enough, then one must learn to re-love their bodies. So much courage and bravery here. I've worked with many breast cancer survivors over the years and I am always amazed at their strength and honesty in life.

    thanks for sharing..

    leslie

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  8. What a fighter. A story of what true strength is all about. Wow. Thanks so much for sharing.

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  9. Wow, what a great cause! Her story is so touching and while her story is difficult, her strength and perseverance is definitely inspirational!

    xoxo,
    Chic 'n Cheap Living

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  10. My kind of girl. She is going to control her destination. So inspiring, great things are truly ahead for her.

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