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The BRCA Gene and Losing American Writer Elizabeth Wurtzel

Photo by Neville Elder

Elizabeth Wurtzel was a fearless writer, willing to share stark details of her own clinical depression, drug use, and sex life at an age when most of us are still crafting the narrative of who we are. Even her book titles – Prozac Nation: Young and Depressed in America and Bitch: In Praise of Difficult Women – were forthright and unflinching. Perhaps this is why I am struggling with Wurtzel’s death at the age of 52, from a cause that she could have taken steps to prevent.

Wurtzel and I shared many characteristics: We were Jewish New Yorkers of similar age, both of us writers, and most importantly we each had inherited a genetic mutation called BRCA. According to the CDC, half of women with a BRCA1 or BRCA2 gene mutation will get breast cancer and a third will get ovarian cancer by the time they reach 70. Compare that to women without the mutation: seven out of 100 will get breast cancer and one out of 100 will get ovarian cancer.

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artist emily mcdowell reveals the deeply personal reasons she launched her empathy cards collection, what spurred her relationship with Sheryl Sandberg’s OptionB team, and the one memento that reminds her most of a very dear friend

Pinch me! I am super excited to share my latest Q&A with you – a conversation with the incomparable Emily McDowell. Don’t know her name? I can nearly guarantee you know her artwork – fun, whimsical, and often sassy and irreverent. Slate named her Empathy Cards, a line of greeting cards crafted to help family and friends connect around illness and loss, one of the top designs making the world a better place. And no, I’m not getting paid to say any of this!

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Preventing Cancer – What I Did to Stay Alive

I woke up this morning without breasts. Not a surprise. This is how it’s been since I underwent a prophylactic double mastectomy six years ago on August 7, 2012 – to prevent getting breast cancer. I still think, as I imagine Angelina Jolie believes of her life-affirming surgery, it’s the best decision I ever could have made.

For more than a decade, my gynecologist warned me I was high-risk for developing cancer. My mother had died of ovarian cancer and I tested positive for BRCA1, the genetic mutation that bumps lifetime risk of breast cancer from 12% (the general population) up to 85%. Couple all of this with the knowledge my grandmother died of breast cancer, and surgery actually felt like an opportunity, not a sentence. Doctors promised the 11.5-hour procedure (the plastic surgeon created breast “mounds” out of my own belly fat so I could avoid getting implants) would free me from many more years of medical surveillance – a battery of non-stop breast exams, mammograms, and MRIs. And it did. Even better, when the anesthesia wore off, the relentless fear of being diagnosed with breast cancer was gone. I was free. …Continue Reading

CNN.com OPINION: What I share with Angelina Jolie

In 2007 I had my ovaries and fallopian tubes removed to prevent my getting ovarian cancer.

It was a surgery of the kind that Angelina Jolie recently underwent, as she revealed Tuesday in a New York Times op-ed. Two years ago, Jolie divulged that she’d had a prophylactic double mastectomy — I had done this as well, in 2012.

Along with the effects of the surgeries themselves, we now also share a related fallout: surgical menopause. Continue Reading

CNN.com: Foods every breast cancer survivor should know about

Women checking in for appointments at the Comprehensive Breast Center at St. Luke’s-Roosevelt Hospital Center in New York this month are being offered more than a pre-op or post-op surgical visit.

On the reception desk, inside a large plastic frame, is a colorful flyer decorated with pictures of luscious-looking fruits and vegetables. It’s an invitation to attend “Superfoods and Super Habits for Super Health,” a seminar that promises to teach patients the foods they should eat to boost their immunity and — not in so many words — reduce their chances of dying of breast cancer….Continue Reading

New York Times: Can the Human Blueprint Have Owners? BRCA Test, Vital for Me, Shouldn’t Be Limited

Myriad began offering BRCA1 and BRCA2 testing in 1996, the same year my mother died of ovarian cancer. Since then, Myriad reports to have screened more than one million patients. That includes Angelina Jolie, and me.

Jolie and I have a lot in common: Her mother died of ovarian cancer when she was 56; my mother died of ovarian cancer when she was 57. Angelina tested positive for BRCA1; so did I….Continue Reading

CNN.com Health: Why More Women are Choosing Double Mastectomies

Ten months ago, Vanessa Thiemann lay in bed unable to sleep.

The 42-year-old single mother of two had a sinus infection, and the pain was making her restless. She tried getting comfortable on her left side, then her right, but she ended up staring at the ceiling in complete darkness, her left hand coming to rest on her chest….Continue Reading

CNN.com Health: My Preventive Mastectomy – Staying Alive For My Kids

I’m not a helicopter parent and my children would tell you I don’t bake cupcakes for their birthday parties. But I’d readily cut off my breasts for them — and recently, I did.

Removing breast tissue uncompromised by cancer is relatively easy. It took the breast surgeon about two hours to slice through my chest and complete the double mastectomy seven weeks ago…Continue Reading

21 Days Post-Op: My Journey to Prevent Ovarian Cancer

I am no longer a surgical patient.

Just three weeks after my hysterectomy and surgery to remove my ovaries, my doctor has cleared me to take back my life. He said I am healing perfectly and I can even resume exercising. I don’t have to go back to his office again until my next regular gynecological exam  in six months. And, here’s the most exciting part: my days of routine blood tests and radiological screenings to detect ovarian cancer are over. Done.

Ever since I tested positive for BRCA1 four years ago (and to be honest, ever since my mother died of ovarian cancer seven years before that) I have been seeing a team of cancer-prevention specialists. I’ve been getting CA-125 blood tests twice a year and a transvaginal sonogram once a year.

So, not only has removing my ovaries brought down my risk of developing ovarian cancer to about 1.5% (from 40-60%) and liberated me from years of real fear – the operation has also freed me from being poked and prodded on a recurring basis. I truly can’t tell you how thrilled I am that I had this surgery. I am free!

But wait. BRCA1 is not done with me yet. Even though I have cut my risk of breast cancer in half by having my ovaries removed, women with BRCA1 have up to an 85% lifetime chance of developing breast cancer. (The statistic for the general population is 12%). Breast cancer is still an all-too-real possibility. So, now what?

Well, because I’ve long known about my genetic predisposition to these cancers, I’ve always gone for routine breast MRIs and mammograms, so
I’ll continue that. I also see a medical oncologist once a year who specializes in breast cancer, so I’ll keep seeing her. But looming in the future is another operation I will have to consider: an elective bi-lateral mastectomy to prevent breast cancer.

For now though, I’ll continue to heal and enjoy the holidays. I’ll even take the time to walk in the woods and throw snowballs with my children. And when I toast the New Year in a few days, I’ll drink to my new, ovarian-cancer-free-life.

One day at a time. One day at a time. Happy New Year!

**Since my recovery from cancer-prevention surgery has been so wonderfully ordinary, this will be my last Blog specifically related to my operation on November 29th, 2007. Of course, I’ll keep you updated should anything develop I think is worth sharing.

Please keep your comments, questions, and emails coming. I’d love to keep this important — too often secret — conversation going. It’s
important we talk. These are, quite literally, life and death decisions. They deserve and require public discussion.

My focus will now be on what’s ahead – my husband, my kids, and writing my next book. Thank you for sharing my journey with me

Back to the Cancer Prevention Series

14 Days Post-Op: My Journey to Prevent Ovarian Cancer

Today is two weeks since my surgery and I basically feel as if I never had an operation. The best news I can report is that I haven’t had a single hot flash. Not one. So far, surgical menopause is just something I was anticipating and fearing – but haven’t had to deal with — and maybe never will. I am not on any hormones and won’t be taking any unless my symptoms change.

My biggest concern right now is getting myself on a diet of good food and supplements to prevent osteoporosis. Osteoporosis is usually  associated with older women who’ve gone through menopause naturally and gradually – but since I’ve had my ovaries removed and because I’m now in menopause – I need to care about calcium and vitamin D more than most 37-year-old women. Because of that, my doctor told me I should schedule a base-line bone density test and I’ve also decided to make an appointment with a nutritionist.

I go back to my surgeon next Tuesday for what I’m expecting to be my last follow-up visit. While I’m a little more tired than I’d like, my doctor has assured me that my fatigue is simply the result of having had a major operation and that I’ll be back to my normal energy level soon. That’s good…and bad. I’ve gotten used to puttering around my house, reading magazines, and generally avoiding work…Well, all good rest must come to an end…even if the R&R started because of surgery.

Back to the Cancer Prevention Series

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