10/28/2010 06:58 am ET | Updated May 25, 2011

'Previvors': The Fight of Those at High Risk for Cancer

Imagine finding out that you had a significant chance of developing breast cancer. Imagine you've watched family members suffer from the disease. And now imagine that you could take steps to make sure you wouldn't have to do the same. You could almost assure that you'd either never get breast cancer or you'd likely catch it so early that survival was nearly certain.

Seems to make perfect sense, doesn't it? No one could possibly have issues with a person taking her health and her life into her own hands, right? Think again.

People who have not had cancer but have a high risk for developing it have been dubbed "previvors." And thanks to advances in genetics and medicine, breast cancer previvors can fight the disease before it strikes. We should celebrate this whole new way of looking at breast cancer, and thousands of women and men do. But there are those out there who think this whole new previvor movement, so to speak, is an outrage.

For instance, one woman on said, "I am a VERY aware Breast Cancer Survivor ... and I think this new "Previvors" outbreak is a disgrace. Others have said that the word "previvors" is offensive, demeaning and a slap in the face to women who have had breast cancer. They say previvors take attention away from "true" cancer survivors.

Stirring the controversy even further is the fact that some people are vehemently opposed to one option that dramatically reduces a previvor's chances of getting breast cancer: prophylactic mastectomies. These naysayers call previvors who take action "paranoid" and "hypochondriacs." They've even compared a high-risk woman removing her breasts to someone with a high-risk for cataracts removing their eyes. Some have said the surgery is self-mutilation, stupid and nonsense.

I understand why some breast cancer survivors might be angry that genetic testing and the many options previvors have today weren't available years ago, when such great strides might have helped them avoid much suffering. But how can someone who has faced breast cancer fault another woman for doing whatever she can to avoid it? How can someone judge a woman for taking steps to protect herself because she's watched her mother, her grandmother or her sister battle the disease? Who are any of us tell a woman how much value she should place on her breasts?

Take Suzanne, one of the women featured in my book, "Previvors" ( Suzanne lost her mom to breast cancer when she was only four years old. She died on Suzanne's first day of kindergarten. Suzanne later found out that she, too, had a high risk for breast cancer, and she did everything in her power to make sure didn't follow in her mother's footsteps. In other words, she opted to have a prophylactic mastectomy so that her own young daughter didn't grow up without a mother like she did. Sure, if Suzanne had not had the surgery, she might have dodged the bullet. She might not have developed breast cancer. But she just wasn't willing to live with the fear and uncertainty of what fate might have had in store. It was her body. Her choice.

How a previvor confronts her risk is a very personal decision, one a person should make with the help of a genetics expert. Some choose increased surveillance or risk-reducing drugs; others opt to undergo prophylactic surgeries, a choice that is absolutely not right for everyone. Surgery does lower risk more than any other option, but it's not an ideal solution. Give previvors an equally effective, less-invasive option, and they will embrace it.

Regarding the controversy surrounding the word "previvor," which was coined by an organization called FORCE, no one is saying that facing a high risk for breast cancer is anything like facing a diagnosis. But I just don't understand this "us versus them" mentality. We need to pool our resources and do whatever we can to fight this horrific illness. We're all in this together.

What's more, previvors do have their own anxieties, confusion, suffering and sorrow. They have their own complicated decisions to contemplate. Some have a BRCA mutation, which puts their breast cancer risk up to 87 percent and their ovarian cancer risk up to 44 percent during their lifetime. Others have strong family histories and other risk factors that raise their odds considerably. Many previvors have lost multiple family members to cancer, and they view their breasts as ticking time bombs. Certainly, it's not the same as going through chemo, fighting for your life, and coping with the horrible unknown of whether or not the cancer might one day recur. But previvors do experience uncertainty and fear. It's just different a different kind of uncertainty. A different kind of fear.

Years ago, many people steered clear of another word that today gets nearly 300 million hits on Google: cancer. They wouldn't say it out loud; they'd whisper it. Or they'd abbreviate it, calling it "the big C." And millions of women battling breast cancer felt like they had to do so alone. There were no support groups. Cancer just wasn't something people talked about.

But then, in 1974, First Lady Betty Ford went public with her breast cancer diagnosis and mastectomy. Around 10 years later, October became the National Breast Cancer Awareness Month. And organizations like Susan G. Komen for the Cure brought even more awareness to the disease, complete with pink ribbons and fundraising walks. Women finally banded together, shared their stories, and created a sisterhood of breast cancer patients and survivors. They no longer felt alone.

And now high-risk women also no longer have to feel alone, thanks largely to this extra word in our vocabulary. With the term "previvors," women with increased odds of getting breast cancer finally have a name for what they are. How could anyone deny them an identity? How could anyone deny them one word that conveys so much progress and hope? The truth is, we can't. So, we might as well add it to our artillery and use it to better fight this dreadful disease.

Dina Roth Port, a freelance writer for publications such as Glamour, Parenting, and Prevention, is author of Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions. Visit her website at