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.

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.

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.

That’s a big assignment! But I’ll start with a non-genetic fact, which is that most breast cancers and ovarian cancers (90-95%) are NOT inherited. They are what is called sporadic. I know this surprises many people. Only about 5-10% of these cancers are due to a pre-disposition mutation (change) in one of the BRCA genes. Because genetic testing involves limitations as well as benefits, it is important to meet with a Genetic Counselor before embarking on genetic testing. Your family history is the single most important element in trying to determine if your cancer has an inherited basis (in other words, is not sporadic) and the first thing a Genetic Counselor will do is draw up a family pedigree based on the information you provide. So find out as much as you can about your family (both maternal and paternal sides) before you have that meeting: who had what cancers and at what ages. Very often, there’s someone in the family who is the family historian and knows not only the family secrets but also their medical histories. Since men as well as women can carry a genetic mutation, be sure to learn about your father’s side as well as your mother’s.

Having a mutation is not a diagnosis of cancer but an indication that the risk for developing cancer is increased. And, of course, the mutation can then be passed on to one’s children, which is of utmost concern to carriers of a mutation. Our understanding of these genes and mutations is increasing as we speak, but we’re not at the stage where we can say with certainty that a negative result is definitive, except in families where a mutation has already been identified. But in those with a mutation, especially someone who has not been diagnosed with cancer, the issues are complex and often frightening. I am the Coordinator of the Genetics for Life program at Sharsheret, a national organization offering 11 national support and education programs for young Jewish women and their families facing breast cancer and ovarian cancer. If you are Jewish, there’s a 1/40 chance of carrying a mutation, as opposed to approximately 1/385 in the non-Jewish population. We provide many free resources, one of which is linking women with others who have faced the same or similar situations. Our web site, www.sharsheret.org, provides information about our support and educational programs and how to become involved. And you can call me at 866-474-2774. I’ll be happy to speak with you directly.

Niecee Schonberger, MS, CGC

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.

I also emphasized how important it is that genetic counselors focus on the psychological and emotional issues that previvors face, not just the medical statistics. Again, many counselors told me that they would try to include more of those kind of discussions in future sessions.

Of course, some counselors explained that those in their field tend to be overworked. Many said it’s difficult to find the time to offer this extra support, this extra hand-holding that previvors say they need. However, they added that they would try. They all wanted to continue the dialogue so that they can continue to find ways to improve their practices.

What also impressed me was the number of students attending the conference. Each one was enthusiastic about his or her future as a genetic counselor In turn, the future of this field seems very promising.

Lastly, I was touched by how many counselors have been recommending my book, Previvors, to their patients. One counselor’s copy was tattered, dog-eared, and flagged with multi-colored labels. As an author, I couldn’t ask for a greater compliment.

Thank you to the National Society of Genetic Counselors for so warmly inviting me to your conference. Thank you to the hundreds of counselors I met for your passion and kindness. I know that with the great strides and advances we’re continually making in genetics, we’re all going to depend on the expertise and guidance of genetic counselors more and more.

And after attending the NSGC conference and meeting so many of these counselors, I’m happy to report that we’re in very good hands!

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.

Because while my book includes the medical facts and information that previvors need to know, it also includes the stories of Lisa, Mayde, Amy, Rori, and Suzanne. And these anecdotes, these real-life experiences really convey to previvors—as well as their genetic counselors and doctors—all of the medical, emotional, and psychological issues that a person with a high risk for cancer might face.

So, this Friday I’ll be sharing the perspective of the patients based on my interviews with these five women and through speaking with countless previvors at other speaking engagements and conferences throughout the country. I’ll explain what it is, exactly, that previvors say they need from their genetic counselors.

For the record, I am a huge proponent of genetic counseling, as are many other advocates for previvors. For instance, Sue Friedman, founder and director of FORCE, said in my book, “Genetics is a complicated, constantly evolving field, and it can be very difficult for a person to get a clear understanding of their risk unless they have input from a specialist in that area.” In other words, a board-certified genetic expert can provide previvors with accurate up-to-date information about their risk, help them with the psycholgocial repercussions of knowing it, and explain all options so they can make informed decisions regarding what to do about it. The danger of making such decisions in “a vacuum,” as Friedman puts it, is that women may make potentially life-altering choices based on false information or data they don’t completely understand.

It’s clear that previvors need genetic counselors. And through my speech to these counselors on Friday, I hope to help them make the most of their vital relationship with their patients.

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.

I don’t like sounding like a broken record, but this message is certainly worth repeating: We MUST start a national dialogue about risk. We are so lucky to live in a time when people with a high risk for cancer can take steps to fight the disease before it even strikes. We can learn our risk and protect ourselves. We can turn our fear of cancer into empowerment.

We can radically change the way we even view cancer. In my book, Previvors, Angela Trepanier, the past president of the National Society of Genetic Counselors says that future generations “won’t have witnessed multiple family members suffering or dying from cancer. They’ll see this as a disease they have control over.”

Sue Friedman, founder of FORCE, said, “Research for a cancer cure is critical, but where we have the great potential to save lives with the technology and information we have right now is the area of risk assessment and risk management.”

In other words, we can take control, but it’s a matter of educating the masses. I ask everyone reading this post to please share it with your loved ones and friends (Facebook and otherwise). Help spread the word about previvors. Just think, if we all just tell a few people about their cancer risk, we can help thousands upon thousands who might be susceptible.

I can’t think of a better reason to celebrate.

Happy Previvor Day! Please make it count!

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.

The truth is, most people who are previvors don’t even 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.

Those of us who are involved with organizations such as FORCE know all about risk. We’re educated. We’re empowered. But what about the men and women who have no clue that they have a high risk for cancer? Or the ones who know they’ll likely battle the disease in their lifetime but don’t know how to protect themselves. How do we reach them?

In my book, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions, I describe the many options we have today to defend ourselves against hereditary cancer—surgical and nonsurgical options that were not available just a few decades ago.

But what’s the point in having these great medical advances if we’re not taking advantage of them? The problem is that most people don’t know about their cancer risk so they’re not increasing their surveillance, meeting with genetic counselors, or taking steps to lower their risk. Many doctors aren’t talking to their patients about risk, and the patients often don’t even know the questions to ask.

So what’s the solution?

We need to remember that we’re all in this fight against cancer together. We must start a national dialogue about risk. Whether it’s a book, a blog, or even just talking to a few loved ones, we can all help educate others. Tell people about the fears and concerns you have living with a hereditary risk for cancer. Have a candid conversation with your primary care physician and/or gynecologist. Make sure they understand the risk factors for hereditary cancer. Tell these doctors about the National Society of Genetic Counselors, so they can refer patients to such experts in their area.

Introduce family member, friends and neighbors to organizations such as FORCE, Bright Pink, and Sharsheret and all that they offer. Teach them about the word “Previvors.” It’s a word that conveys hope. It’s about choosing empowerment over fear.

There’s so much we can do together to inform the countless previvors out there who are still in the dark. And bit-by-bit, with each National Previvor Day, we’ll continue to fight cancer before it strikes and take charge of our health in ways that previous generations never could.

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.

As a mom who works from home, I know what it’s like to rely on others for help. Not that I’m comparing myself to someone with a high pressure job—after all, I don’t have to travel every few days and I’m lucky that I can set my own schedule. However, I do have to travel occasionally and meet deadlines, so I often need to depend on others. Like Kate’s husband, mine is an enormous help and I certainly couldn’t do “it” without him.

But my friends are constantly helping me out, too (and vice versa). As I work this afternoon, my friend is picking my daughter up with hers and meeting me at their gymnastics class an hour later. I’ve been stuck on lengthy interviews or even in the waiting room at doctor’s offices, and have called friends last-minute for a impromptu play date. They all readily agree. And I’d do the same for them.

The thing is, all of us—working moms, stay-at-home moms, and hybrids like me—do “it” by helping one another. Movies like to portray this “us versus them” mentality, but from my perspective it doesn’t exist. No one gets it the way other moms do, so we all help each other out—whether that means doing carpool duty, helping a friend work through an issue with her child’s teacher, or even just figuring out what party favors to get for a 7th birthday bash.

It truly does take a village (our husbands, relatives, and most certainly our friends!). For some reason, the movie failed to recognize that.

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

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.To be honest, I hadn’t really thought about telling my kids too much about September 11th. They are 5 and 7, so they’re a little young. But today I received an email from their school which explained that, on Monday, each class (from pre-K on up) would be sharing in age appropriate activities to understand the importance of September 11. For instance, they’ll each receive little flags and they’ll have a moment of silence. They’ll also talk about how the freedoms we enjoy as citizens of this country.

It got me thinking. If the kids were going to be hearing about 9/11 at school, I should probably discuss it with them at home. However, how could I do that without scaring them? Without causing them to worry about ever getting on an airplane or visiting New York City again? Without shattering their belief that the world is a safe, happy place filled with kind people?

But I realized I don’t have to focus on the negative of that horrible day. I don’t have to dwell on the evil, the cruelty, the tragedy of it all (though I certainly will never forget it). Instead, I could tell them stories of courageous firefighters who gave their lives to save others. I could tell them how a bunch of people on an airplane fought the bad guys and probably saved hundreds of other people by doing so (let alone the Capitol.) I could explain that even though the bad people did really bad things, our country didn’t cower in defeat. We joined together with our loved ones. We fought back. And, in the end, good prevailed as it usually does.

Those are the lessons I want to teach my children. And I know that someday in the future they’ll learn every detail of September 11. But for now, I’ll teach them the positives things that came from that day. I’ll focus on the good.

And I think sharing September 11th with my kids will help me do the same.