After Cancer Claims Her Parents and Threatens Her, Leawood Woman Makes a Pre-Emptive Strike.
Posted on: Thursday, 8 November 2007, 06:00 CST
By Lisa Gutierrez, The Kansas City Star, Mo.
Nov. 8--Breast cancer tagged Kelly Braun when she was 35.
Chemotherapy swiped the blond hair right off her head. Radiation discolored her chest.
"Go," her oncologist told her when it was all over. "Live your life."
But Kelly Braun couldn't. The cancer had spread to her psyche.
"After the cancer scare, there's hardly a day that goes by when you just don't think 'When is it going to come back?' And you're scared to death," says Kelly, now 40 and living in Leawood. "I remember waking up in the mornings and that's the first thing my mind would go to. You're just in a constant state of panic."
So much panic that she had to pop anti-anxiety pills just to get through subsequent mammograms. Fear consumed her: What are they going to find this time?
She got her answer more than a year later. She took a simple blood test that revealed that she carries a gene that increases her lifetime chance of developing breast and possibly ovarian cancer.
Single, healthy, working at a new job in the Washington, D.C. area, and terrified of getting cancer again, Kelly had a decision to make.
Should she rely on mammograms and other surveillance to monitor her breast health the rest of her life?
Or could she try to blindside the enemy?
Researchers at the University of Minnesota Medical School found that between 1998 and 2003, the number of women having both breasts removed after a tumor had increased 150 percent.
Could she take the offensive, destroy the target?
Could she get rid of her breasts?
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Kelly knew this disease intimately. It killed her mom and dad.
John Braun sold insurance to provide for his wife and three children. When he was 40, John was diagnosed with esophageal cancer. At the time Kelly was 16.
Less than 15 years later, cancer attacked her mother. Kelly thought that when doctors said her mother's small cell carcinoma was treatable, that meant curable.
During Diane's first round of chemotherapy for lung cancer, however, a nurse encouraged her to get her affairs in order.
Diane burst into tears.
"It sent me rushing down to the nurse's station demanding to talk to her doctor," Kelly says.
Over the phone, Diane's doctor clarified: Your mother's cancer is treatable but terminal.
"He said, 'We can still buy her time with this.' That stuck in my mind. I just didn't feel the doctors had been very frank with us."
In the end, Diane spent her last days in a coma. Kelly is unable to recall the moment without tears.
"I knew she was dying," she said. "And I didn't want her to go by herself. I was so afraid to leave the hospital.
"I just went and sat next to her. I could tell it was time. I just told her 'Mom, you can go now. You don't need to do this anymore.' "
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Five years later cancer struck a third time. This time, it came after Kelly.
Her employer had just moved her to Fairfax, Va. Worried about her cancer risks, she insisted on a baseline mammogram from her new doctor. She was 35.
She tried not to worry when she got a call asking her back for a second test. She says as she waited in the exam room for someone to tell her it was OK to get dressed, a woman came in and said, A radiologist would like to speak with you.
At that moment, she knew something was wrong.
"I'll never forget the walk down that hall," she says. "That was the most terrifying walk, following the nurse back to visit the radiologist. I just thought I was going to pass out, because all of a sudden these flashes of my parents (came) in my head."
The news was bad: Doctors wanted to remove something from her left breast. Three days later the biopsy revealed cancer.
"I was really mad," she says. "I kept thinking, 'How does this happen in one family?' You lose two parents to this disease. To this day I try not to get too 'poor me' about it. But I just look at what's in my family.
"That's why when I got my own diagnosis ... it was such a shocker. Because I sit there and think, 'How many times can lightning strike in the same family?' "
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The size of a pea, Kelly's cancer came out easily enough. Doctors caught it before it had a chance to fatally poison her lymph nodes. Four rounds of chemotherapy began the week before Christmas.
"That was just lousy," Kelly says. "Everybody was coming to Virginia to spend Christmas with me ... and I was panicking because I thought, 'Oh, they're all going to be here when my hair starts falling out."
Rather than look like an old man with clumps of hair, she shaved her head.
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A year later, to lend support to a friend in need of a genetic test for breast cancer, Kelly took the test around the same time.
Before the test, Kelly met with a genetic counselor who walked her through the choices she would face should the test come back positive.
"If you're going to take the test you really kind of have to think about what you're going to do with that information," Kelly says. "Because there are some people, even if they got a positive test, they're not going to do a darn thing. In that case, why bother taking the test?"
Cancer experts estimate that 5 percent to 10 percent of the 192,000 American women diagnosed each year with breast cancer have a hereditary form of the disease.
Mutations of certain genes make them more susceptible.
Two of those genes are called BRCA1 and BRCA2.
Kelly tested positive for BRCA2, which doctors told her increased her odds of getting breast cancer to 85 percent.
Kelly was stymied.
"A cancer diagnosis is so much more in-your-face because you've got a life-threatening situation you have to deal with," she says. "When you get this diagnosis, those choices aren't so clear. You have a probability. There's not one right choice."
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True to her driven nature, Kelly set out on a dramatic course: prophylactic double mastectomy and reconstruction.
She was going to get rid of her breasts.
"She was really brave to do that," says brother Scott.
She knows that some people thought she was crazy. And she realizes this doesn't necessarily guarantee she'll never get breast cancer again. But in her heart, Kelly knew that this was the only way to quiet her mind.
She also didn't worry about what new breasts would look like.
"They have these incredible ways that they construct them so you don't even know they're not really my own," Kelly says. "Somewhere along that continuum of research it didn't seem like such a bad idea anymore, because I could look normal."
Getting to "normal" cost close to $500,000, which her insurance company paid after Kelly appealed to have out-of-network surgeons do the work. Just months before Hurricane Katrina, she went to New Orleans for the nine-hour, three-surgeon operation.
"The way they do it is they take fat out of the belly to rebuild your breasts," she says. "So I'm thinking 'Oh my gosh, I can get rid of that belly and get brand new breasts all at one time.' It's almost like a little bonus."
Afterward, Kelly was left with a scar from hip to hip, two new breasts a cup size larger -- and a giant step toward peace of mind.
"They're just a part of me now," she says. "And now I don't have that risk. And it's the best decision. I definitely would have done it all over again."
Her war isn't over.
Her oncologist has recommended that since BRCA2 also puts her at risk for ovarian cancer, she have her ovaries removed, too.
Single, healthy, with a good job, Kelly Braun says she's going to do it.
But when?
That's one decision she's not eager to make.
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A FORCE to reckon with When Kelly Braun grappled with the aftermath of her genetic test, she turned to a national organization called FORCE.
The Florida nonprofit organization -- Facing Our Risk of Cancer Empowered -- helps women whose family history or genetic status puts them at a high risk of ovarian and/or breast cancer.
Braun appears in a 2008 calendar sponsored by the group that features photos of women who have had mastectomies.
The group will have its first meeting in the Kansas City area at 7 p.m. Monday at the Leawood home of Cherine Janzen, the group's Kansas outreach coordinator. Janzen, 54, was diagnosed with breast cancer four years ago. Genetic testing showed she carries the BRCA2 gene.
For more information about the Monday meeting, call Janzen, 913-526-9800 or e-mail cherine@force.org.
For more information about FORCE and the $15 calendar, go to www.facingourrisk.org or call 866-824-7475.
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Cancer 411 What are BRCA1 and BRCA2?
Changes -- called alterations or mutations -- in certain genes make some women more susceptible to developing breast and other types of cancer. Inherited alterations in two genes called BRCA1 and BRCA2 (short for breast cancer 1 and breast cancer 2) have been connected to many cases of hereditary breast and ovarian cancer.
If I have the gene, how high is my cancer risk?
Women with an altered BRCA1 or BRCA2 gene are three to seven times more likely to develop breast cancer than women without alterations in those genes.
How are the tests for BRCA1 or BRCA2 performed?
Blood is drawn in a laboratory, doctor's office, hospital or clinic and tested in a lab.
How much does genetic testing cost and how long does it take to get the results?
Costs can range from several hundred to several thousand dollars; coverage by insurance policies varies greatly.
What are my options if I test positive?
They include:
--Surveillance: Mammography and clinical exams for breast cancer. For ovarian cancer, methods include transvaginal ultrasound, CA-125 blood testing and clinical exams.
--Prophylactic surgery: Removing as much of the at-risk tissue as possible. Preventative mastectomy, however, does not guarantee against breast cancer.
--Risk avoidance: Exercising regularly and limiting alcohol consumption may decrease breast cancer risk, though the effects on people with BRCA1 or BRCA1 are not known.
Source: National Cancer Institute, www.cancer.gov.
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@ To hear excerpts from the interview with Kelly Braun, go to KansasCity.com and click on FYI/Living
To reach Lisa Gutierrez, call 816-234-4987 or e-mail lgutierrez@kcstar.com.
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Copyright (c) 2007, The Kansas City Star, Mo.
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Source: The Kansas City Star (Kansas City, Missouri)
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