With Angelina Jolie’s big announcement and all the media attention surrounding BRCA and preventative mastectomy, maybe you’re wondering if you or someone you love is a previvor (a person who hasn’t had cancer but has a high risk for developing it.) The truth is, most people don’t know that they are. For instance, though about 1/500 men and women have a BRCA mutation, less than 10% of people know that they do. (Note: The rate among certain populations is much higher—for instance, 1/40 Ashkenazi Jews have a BRCA mutation.)

Here’s how you can determine if you’re a previvor:

1. Know your family history. In most cases, a previvor’s risk starts with family history. So it’s crucial that you learn your family history on both sides of your family. Your father’s side of the family counts as much as your mother’s side. Going back as far as you can, find out about any family members who battled cancer and the ages they were diagnosed.

2. Watch for red flags. Are there more than two cases of cancer on the same side of the family? Is there any ovarian cancer or male breast cancer in your family? Have any relatives been diagnosed in their 40s or younger? If you answered yes to any of these questions, you might have a hereditary risk for breast cancer.

3. Learn your other risk factors. For instance, have you had any abnormal breast biopsy results? Do you have dense breasts, which is something your doctor can help you determine? Or have you taken hormone replacement therapy? These factors can all increase your risk for breast cancer.

4. Keep an open dialogue with your doctor. If you think you might be at risk, tell your doctor about your family history and other risk factors, and discuss what steps you should take. You should also consider seeing a genetics counselor, who can really help you understand your risk, discuss whether or not you should undergo genetic testing, and highlight the pros and cons of all of your options based on your results. The National Society of Genetic Counselors can help you find an expert in your area.

5. Remember, you’re not alone. Check out organizations such as FORCE and Bright Pink. They’ll both provide you with the latest research on hereditary breast and ovarian cancer. And they have message boards and other networking opportunities where you can speak with women who completely understand what you’re going through.

As an advocate for previvors and a friend to so many of them, I was beyond thrilled by Angelina Jolie’s announcement yesterday that she, too, is a previvor. Her candidness did so much for high risk women in just one day—people all over the world started learning about what it means to have a BRCA mutation as well as the options previvors face. She has educated so many and  has thrown this important issue directly into the spotlight.

While her decision to have a prophylactic mastectomy was very personal, I have somewhat of a sense of her thought process because the women in my book, Previvors, faced the same issues she faced. Especially since Angelina Jolie is a mother like they all are.

Here’s an idea of what she might have been thinking.

Here’s a great blog post from Niecee Schonberger, MS, CGC, Coordinator of the Genetics for Life program at Sharsheret. Thanks Niecee!

I met Dina at the annual conference of the National Society of Genetic Counselors last month in San Diego. She gave an inspirational presentation about some of the issues surrounding genetic testing and genetic counseling, specifically as they relate to previvors. As a Genetic Counselor, she invited me to share what I know about cancer risk, testing and genetics with all of you.

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I recently had the honor of speaking at the National Society of Genetic Counselors‘ annual conference in San Diego. Specifically, I participated in a plenary session and shared with 1200 genetic counselors the 5 Things Genetic Counselors Need to Know About Previvors. Bonnie J. Rough, author of Carrier, was my co-presenter.

I have to say, the crowd was one of the most receptive I’ve ever addressed. The genetic counselors were passionate about their patients and eager to learn how they might further help those with a high risk for cancer. For instance, one of my points was that previvors want their genetic counselors to follow up with them. Afterwards, many who heard my speech told me they were planning on calling or emailing each of their patients when they returned back home.

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This Friday, I’ll have the honor of speaking in front of nearly 1,000 of genetic counselors at the annual National Society of Genetic Counselors conference in San Diego. My plenary session is entitled “5 Things Genetic Counselors Need to Know About Previvors.” I’m excited and honored to participate in this important event.

Ever since my book, Previvors, came out last year I’ve been speaking nationwide to women and men about their cancer risk. I usually address risk factors, red flags, and all the statistics related to BRCA mutations, surveillance options, and the latest in prophylactic surgeries. But the genetic counselors already know all of this. In fact, many of them helped me decipher this critical information when I was first writing my book.

That’s why I’m shifting gears.

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Today is National Previvor Day. This day is so important for the millions of men and women out there who are previvors: People who have no had cancer but have a high risk for developing it. And many of those previvors will be celebrating the long-overdue increased awareness that this day brings to their population.

But having a designated “previvor” day isn’t enough. The majority of the people in this country have no idea that today is National Previvor Day. They have never heard of FORCE or Bright Pink. They don’t even know the first thing about breast cancer risk.

We still have a lot of work to do.

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In 2010, the U.S House of Representatives declared the last week of September National Hereditary Breast and Ovarian Cancer  (HBOC) Week and the last Wednesday of the month National Previvor Day.  Needless to say, this was a huge feat for the previvor community—men and women with a high risk for cancer finally felt like their voices were being heard. With heightened awareness comes funding and support which, in turn, can lead to more research and better options for the millions of people at risk.

And as we prepare to celebrate the second annual HBOC Week starting today and Previvor Day on September 28th, it’s amazing to look back and see how far we’ve come.

As always, FORCE, Bright Pink, and other organizations have done so much nationwide to help spread the word. And if every fundraiser, educational event, teleconference and newsletter enlightened just one more person, then each one was a success.

However, we sadly have a long way to go.

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This weekend I saw I Don’t Know How She Does It with a few of my girlfriends. (My husband happily stayed home—he’s the type of guy who tends to shy away from Sarah Jessica Parker movies.) Based on the 18% RottenTomatoes score it received, I was expecting the worst. And, as with most light comedies I’ve seen lately, it wasn’t actually all that bad. The plot was fluffy and the conclusion was ridiculous, but the cast was so likable that I actually smiled a few times (how can a movie with Greg Kinnear really be that terrible?)

As for the premise, well it’s about a woman trying to juggle a high-powered career and her family. And the script nailed all of the cliches—resentful stay-at-home moms who work out all day, the jealous male co-worker, the corporate climbing “I never want to have kids” female colleague. Sarah Jessica’s character, Kate,  tries to “do it all” by relying heavily on her husband and random babysitters.

But where I Don’t Know How She Does It failed miserably was the fact that, not once, did Kate turn to her friends.

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National Hereditary Breast and Ovarian Cancer Week is right around the corner, and it’s a great reminder to help raise awareness about previvors and their risk for cancer.

Check out our latest press release on the subject: FOR IMMEDIATE RELEASE

It’s hard to believe it’s been ten years. In some ways, September 11th, 2001 seems like so long ago. In others, I remember it like it was yesterday. I guess that makes sense. We tend to remember every detail of certain days in our lives—for me, it’s the happy ones like my wedding day and the birth of my children, as well as the sad ones like the day I lost loved ones, such as my grandparents. Of course, September 11th falls into the latter category—it was one horrific day I’ll never forget.

I was living in New York on that fateful morning. (To read more about my personal experience, read my previous blog post on the topic.)  And for the last 9 years, I’ve spent the anniversary with my husband watching news reports and commemorative TV specials late at night after our kids were asleep.

But this year is different. This will be the first year we will actually share the day with our children. And I was a little torn about just how to do that.

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