"Breast Cancer Ran in Our Family — and I Had No Idea"
When you see Kristin Guinan, 29, at the gym, busting out on the elliptical or doing leg lifts on the quad machine, the first thing that pops into your mind is what great shape she's in. But talk to her about the last two years of her life and you quickly realize that it's Kristin's inner strength that's most impressive.
In early 2008, Kristin, a senior marketing manager at FITNESS, was preparing for her August wedding. In addition to all the dress fittings and cake tastings, there were Kristin's five-days-a-week workouts. "I've always been focused on exercising, staying fit, and looking my best," she says. "It's a huge part of who I am."
One of the top items on Kristin's to-do list was to introduce her fiance, Andrew, to Angela, her cousin who lived in Florida. "Angela was amazing, smart, beautiful," Kristin says. "I totally looked up to her." Andrew never got the chance to meet her. That March, Angela, 39, a mother of two small children, was diagnosed with stage IV triple negative breast cancer, a very aggressive invasive type. Chemo didn't work, and Angela was too sick to come to the wedding. She died just 11 months after her diagnosis. Kristin was heartbroken. "It was such a tragedy," she says. "I couldn't believe she was gone."
The type of cancer Angela had is associated with a rare hereditary gene called BRCA1, which only one in 1,000 women has. "There's an up to 80 percent chance that someone with the gene will develop breast cancer in her lifetime and a 15 to 40 percent chance that she'll develop ovarian cancer," says Elisa Port, MD, who is now chief of breast surgery at Mt. Sinai Hospital in New York City and codirector of the Dubin Breast Center there. The gene typically leaves a trail of disease through a family. If a woman has a first-degree relative, a mom or a sister, say, who had breast or ovarian cancer at age 35 or younger, doctors see that as a red flag. They also pay special attention if she is of Ashkenazi Jewish descent; women of this ethnic background have a much higher likelihood of carrying the BRCA1 or the similar BRCA2 gene.
"I Had the Breast Cancer Gene"
In Kristin's family, however, there were no such warning signs. Her entire family is Italian. And while Kristin and Angela's grandmother had died of ovarian cancer in her forties, she'd had three boys, including Kristin's father, and no girls. Until Angela got sick, there was nothing to make doctors suspicious. "This thing was lurking in our family, and we had no idea," Kristin says.
Test results showed that Angela's dad carried the gene, and so did his brother, Kristin's father. Kristin was frightened, but she tried not to panic. "I had this strong hunch that I'd be positive," Kristin says. "I just knew it, but I didn't let myself freak out." In March 2009, when she and Andrew should have been enjoying newlywed life, Kristin went to Memorial Sloan-Kettering Cancer Center in New York City to get a blood test for the gene. "As soon as we found out that my dad was positive, it was the natural next step for me to get tested," she says.
During the two-hour meeting beforehand, a genetic counselor explained to Kristin the enormous risks facing a woman who is BRCA positive and the stepped-up vigilance she would need to adopt: mammograms alternating with MRIs every six months as well as several physical exams every year. "I couldn't believe this was happening," Kristin says. "I felt as if I had been thrust into someone else's life."
The test results, which came three weeks later, confirmed her worst fear: She had the BRCA1 gene. This meant that Kristin was tremendously likely to get breast cancer, possibly in the next five years because BRCA1 breast cancers are often early onset, Dr. Port says. Kristin also had an increased risk of ovarian cancer. "The genetic counselor handed me a box of tissues and said, 'I'm sorry,' with this look of sadness on her face," Kristin recalls. "I remember thinking, stop looking at me like that! You're acting as if I have cancer now."
"I Want to Keep My Breasts!"
The counselor reviewed Kristin's options: frequent screenings to try to stay one step ahead of cancer, or a double mastectomy, which would reduce her risk of developing breast cancer to less than 1 percent, and then later an oophorectomy in which doctors would remove both ovaries. What was scariest, Kristin says, was how matter-of-factly the information was delivered: "'At about 40, we'll remove your ovaries....' I was like, whoa, you're talking about my body here!"
If Kristin didn't have the double mastectomy, starting a family would be complicated, the counselor told her. The hormonal cascade set off during pregnancy could make any cancer cells in her body multiply. Not only that, but she wouldn't be able to have a mammogram while she was pregnant, which would mean at least nine months without screening for cancer.
Kristin felt numb. "I talked myself down," she says. "I thought, it's okay, I'll just get screened more often. And if I have to have my breasts removed, I'll do it down the road, after we've had children." She left the counselor's office and went home and crawled into bed.
"The Decision That Could Save My Life"
Telling her family was one of the hardest things she'd ever done. "I walked into that appointment as your average 27-year-old and walked out as this sick girl that everyone felt sorry for," Kristin says. "I could see people panicking all around me." Her parents were devastated; her father blamed himself for passing the gene on to her. Andrew's sister, a nurse at Sloan-Kettering, broke down in tears. "She knew how bad it was," Kristin says.
That night Kristin began doing her own research on BRCA1. "I looked up triple negative breast cancer, the type of cancer my cousin Angela had, which is linked to BRCA1. I'd thought that as long as the cancer was discovered early, I could do something about it. But I learned that this kind is not easily treatable. Even early detection might be too late." It quickly became clear that her best chance for survival was to have both her breasts surgically removed. "I knew I had to do it. There was no way of avoiding the surgery. I want to have a family; I want to grow old with my husband," Kristin says, crying. "I wasn't going to let anything stand in my way."
Once Kristin made the difficult decision, her doctors explained that she would need more than one surgery. During the first operation, they would remove her breasts and put in tissue expanders to make room for implants; several months later she would have breast implant surgery. Kristin scheduled the double mastectomy for fall 2009, after she'd have completed a battery of screenings, including a mammogram, an MRI, and blood tests, to rule out existing cancer. (She was clean.)
"I Was So Scared of the Surgery"
That summer Kristin and Andrew tried to enjoy family barbecues and the beach house they'd rented. But Kristin couldn't help but be preoccupied by what was to come. "I'd never had surgery before, and this was huge," she says. "I was so scared." She also worried about Andrew. While most young couples were saving for a house, having fun, and planning a family, "my poor husband and I were dealing with this. I felt guilty," she says. Kristin feared that the surgery would affect their relationship. "I was like, you're not going to think I'm attractive anymore," she recalls. "He said, 'I just want you here. I didn't marry you for your breasts.'"
To distract herself, Kristin worked late most nights and then headed to the gym. She also went for three-mile runs several times a week. "I worked out until the day before my surgery," she says. "It helped so much, especially running. I could let my mind go when I ran. That got me through."
In October, Dr. Port performed Kristin's first surgery, and the procedure went well. Because she was so fit, Kristin was able to get up and walk around the next day, but she was in serious pain. The toughest part was when the bandages came off; they had to be changed twice daily. "I was petrified to see myself," Kristin says. "At the hospital, the nurse made me take a good look. It was so hard to see scars where my breasts used to be. But I also felt a sense of relief. I knew that was the worst it would be and that in time I'd look normal again."
"I Took Charge of My Health"
Back at home, the emotional recovery was difficult. The tissue expanders, which were inflated to make room for the implants she'd have, looked "like two balls under my skin," Kristin says. She was upset and self-conscious, and not being able to exercise robbed her of her usual mood booster. At her high school reunion a month later, she felt ogled. "People were staring at my chest. I wanted to say, 'I can see you!'"
To help lift her spirits, Kristin eased back into exercise, riding a stationary bike and doing the elliptical trainer as soon as doctors gave her the okay. "Nothing compared to the moment when I could run again after surgery," she says. "It felt amazing!"
Today, eight months after implant surgery and a year after the double mastectomy, Kristin is moving on with her life. She's back to her hour-long five-times-a-week workouts, running and lifting weights three of those days and hitting the gym the other two. "It's great to feel like me again," she says. She and Andrew are planning on having kids soon because she'll have to have her ovaries removed in the next five to 10 years to prevent ovarian cancer. "I want to do all the things I'd planned," Kristin says.
She feels stronger and more confident than ever. "Everything that happened to me has been oddly empowering," she says. "I took charge of my life and my health, and I'm proud of the decision I made. Now I know I can get through anything."
The Breast Tests You Need
Once a month: Perform a breast self-exam one week after the first day of your period, when your breasts are easiest to examine. If you find a lump or notice changes, see your doctor.
Once a year: Get a mammogram if you're 40 or older. "Ask for a digital mammogram," says Sharon Rosenbaum Smith, MD, a breast surgeon at St. Luke's-Roosevelt Hospital Center in New York City. "It's computerized, meaning doctors can see more than they can with traditional mammograms." If you have a family history of breast cancer, consult your MD about the best age to start screening.
— Cathy Garrard
6 Ways to Beat Breast Cancer
About 10 percent of women who get breast cancer have the BRCA1 or BRCA2 gene. The remaining 90 percent of cases are caused by other factors, including lifestyle or environment. "The good news is, you can lower your risk of the disease," says Sharon Rosenbaum Smith, MD, a breast surgeon at St. Luke's-Roosevelt Hospital Center in New York City. Start here.
1. Watch your weight. Fat cells release estrogen, a known risk factor for breast cancer. The more you weigh, the greater the odds you'll develop the disease. "Every 11 pounds you gain as an adult increases your risk of postmenopausal breast cancer by 3 to 5 percent," says Karen Collins, RD, nutrition adviser to the American Institute for Cancer Research in Washington, D.C.
2. Eat right. Choose a diet that's low in fat, red meat, and refined sugar and high in fruits and vegetables. "There's evidence that vitamin D, beta-carotene, and cruciferous vegetables, like broccoli, cauliflower, and Brussels sprouts, may help reduce your risk," says Shelly Hwang, MD, chief of the division of breast surgery at the University of California, San Francisco. Aim for about 1,000 IU of D daily obtained from foods such as salmon and fortified milk and by taking a supplement.
3. Get moving. "Research shows that even 30 minutes of exercise three times a week is sufficient to reduce risk," says Megan Baker Ruppel, MD, director of the Comprehensive Breast Care Program at Hollings Cancer Center at the Medical University of South Carolina in Charleston.
4. Go to bed earlier. Women who regularly slept six hours or less a night were 62 percent more likely to develop breast cancer than those who got seven hours, a study found. Experts speculate that melatonin, a hormone produced by the brain during sleep, may interfere with the body's production of estrogen.
5. Kick the habit. Smoking increases breast cancer risk by up to 30 percent, according to a 2009 meta-analysis of dozens of studies.
6. Think before you drink. If Merlot is your go-to stress reliever, consider taking up kickboxing instead. Drinking even one glass of wine a day is linked to an increased risk of breast cancer, research has shown. Two drinks daily may up your risk by more than 20 percent.
— Cathy Garrard
Originally published in FITNESS magazine, October 2010.