Tough Choices

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Hard Decisions

Claudia's Challenge

In the spring of 2008 Claudia was a junior at Georgetown University, in Washington, D.C., far from all the turmoil her parents were going through in Tennessee. By now 21, she was also the only Gilmore daughter old enough to be tested. (Because the mutation doesn't cause health issues in children, doctors don't test for it before patients are 18.) One day in May, while the three of them sat together at lunch, Susan and Dan finally told Claudia the news that had already shaken them.

Claudia didn't know what to think. "My first reaction was that it was just way too big and way too scary to even contemplate," she says. "But then I thought, 'Wait a minute. In college they teach me that knowledge is power. I'd be stupid not to at least look into this.' I made up my mind in about 10 minutes: 'Yep, I'm going to take the test.'"

That August Susan had the oophorectomy and Claudia came home to take a blood test she assumed would rule out both her father's gene mutation and her mother's gene variant. "And then I kind of put it behind me," Claudia says. "I was 21. It's easy to think nothing bad will ever happen to you." But she couldn't put it behind her for long. A couple of weeks later she, too, got a call from the genetics counselor with the news that she had inherited her grandmother's mutation.

"After I hung up everything was just a fog," Claudia says. "At that point it really did seem like a death sentence, like I had only so many more years to live."

Hard Decisions

When she heard the news about her daughter, Susan fell apart again. "But this time I cried for only a day or two," she says. "I knew this was lifesaving information. There are game plans. I was not going to lose my daughter."

As Claudia quickly learned, the protocol for women with BRCA mutations is to do nothing until age 25 and after that to begin a screening regimen, alternating a mammogram and an ultrasound with an MRI every six months. At 35 women are advised to consider getting a double mastectomy followed by an oophorectomy at age 40. But the more Claudia learned about her mutation, the more she encountered stories of women who had developed cancer who were her age or younger. And when you've met a woman who was diagnosed with breast cancer at 24, the watch-and-wait approach can be terrifying. "Breast cancer does happen to people my age," she says. "It's still pretty rare, but it happens to young women every day. With my BRCA1 mutation I could be the next diagnosis."

Which is why Claudia, after two years of research and talking with other young women at high risk for breast and ovarian cancer, has made a decision that goes against part of the usual protocol for managing BRCA mutations. Because she hopes to marry and have children someday, she'll follow the recommendations for oophorectomy. But she's not waiting for the mastectomy. This January, when she'll have time off from her job at a D.C. nonprofit, Claudia will be recovering from an operation in which both of her healthy breasts will be removed and reconstructed. The surgery will reduce her risk of developing breast cancer from up to 80 percent to less than 2 percent. As she wrote on her first post at previve.com, a blog she started to chronicle her journey toward mastectomy, "I have grown anxious to do something bigger to annihilate any chance of this cancer becoming a part of my life as it did for my grandmother."

But there are more benefits to double mastectomy than just avoiding cancer. "Every patient has a different level of anxiety, but if you know you have an 80 percent chance of developing breast cancer at some point, that's a pretty dark cloud to have over your head," says Shawna Willey, MD, Claudia's surgeon and the director of the Betty Lou Ourisman Breast Health Center at Georgetown University Hospital. Moreover, the frequent monitoring that goes along with the watch-and-wait approach often turns up abnormalities that are perfectly harmless but that must be followed up nonetheless. "Having to get biopsies and to think, 'Could this be it? Is this a cancer about to start spreading?' -- I'd be eaten up with all that stress," Claudia says. By having the surgery now she can avoid years of emotional trauma.

Susan admits she's almost relieved by Claudia's decision. "As soon as she started talking about it, I was 100 percent behind her," Susan says. "Claudia feels a better quality of life will come from having this done and moving on, and I get that. As her mother, I'll be able to rest more easily, too." Dan is just amazed at his daughter's courage: "I couldn't be more proud of her," he says.

But not everyone has been supportive of Claudia's choice to act now. One doctor begged her, "Promise me you'll make a decision not to make a decision yet. You don't need to do this," and Claudia understands the point. New research could uncover a less-radical means of managing this risk before she reaches the age when cancer is more likely to strike. And this decision has ramifications that go beyond the pain and risk of major surgery. Breast reconstruction is a tough process: It will take months for her tissue to expand enough to accept implants, and she'll need an additional surgery to remove the tissue expanders and insert the implants. In addition, Claudia's new breast tissue won't be capable of sexual response the way natural breasts are, and she won't be able to nurse her babies.

Then there's the question of dating. Fortunately, Claudia's male friends have been totally understanding. In fact, she is coming to see this situation as a great way to weed out the good guys from the losers. "If I had been able to present this to some of the boys I've dated in the past, I might not have wasted so much time with them," she says.

As she waits, Claudia turns for support to her parents and friends, including many she's met through a group called Bright Pink, a national advocacy organization specifically for young women at high risk of breast and ovarian cancer. In the process she has become a resource for others who are facing the same news. As outreach coordinator of the D.C. chapter, Claudia can offer a unique kind of reassurance. "When young women find the group, they have the same reaction I had: 'Oh my God, I'm not the only one,'" she says. "I'm so grateful that sisterhood is there for Claudia," says Susan.

As for Claudia's actual sisters, neither has been tested for the mutation, and Claudia is cautious about sharing details with them: "They should not have to be thinking about this. They should be thinking about making good grades and having fun at parties," she says. "When they're ready to talk about it, I know they'll come to me. And if either of them ever has to go through this, I'm grateful that I'll be able to help her figure it out."

Originally published in Ladies' Home Journal, October 2010.

 

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