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When her oldest sister got breast cancer, Rose West was 13 -- too young to understand what the diagnosis might mean for her own life but plenty old enough to understand the terror and anguish on her father's face.
And that was still the beginning of breast cancer's relentless march through West's family. It started with her grandmother, diagnosed in 1950, and went on to kill her sister, father and a second older sister. Last year, cancer got even bolder: It attacked West's 25- year-old nephew, who remains in treatment.
"This disease," said West's husband, Jim, "just will not let go of this family."
So at age 39, already older than both of her sisters when they died, Rose West has made a choice: The Poquoson woman will trade her breasts -- so far perfectly healthy in every test she's taken -- for a better shot at a long life.
If surgery goes as planned Monday, surgeons at Sentara Obici Hospital in Suffolk will cut away her breast tissue and spend the next seven to nine hours transplanting skin and fat from her abdomen to build new breasts.
The decision wasn't scary to West; in fact, the thought of living with her breasts was scarier. Blood tests have shown she carries two mutated genes that give her up to an 80 percent chance of getting breast cancer by the time she's 70. Every day that she wakes up healthy, she feels the risk growing.
"Honestly, I feel really good going into this," said West, a marketing consultant with Sentara Healthcare. "I want to be in charge of what's happening to me. It's empowering to take back some control."
The operation, known as a bilateral prophylactic mastectomy, isn't a guarantee, because doctors can't remove every bit of breast tissue. Some medical plans also have been slow to cover it as an alternative to frequent mammograms and breast exams, medications and healthy living.
But as researchers learn more about the causes of cancer, genetic testing and how to predict individual threat, more women are willing to consider a major surgery that lowers their risk of getting cancer by 90 to 95 percent. There's even an increasingly popular term in patient circles: "pre-vivors," or people who attack a potential disease before it ever starts, as opposed to "survivors."
"It's pretty radical, and people have to be at high risk for insurance to cover it," said Dr. Helena Guarda, the plastic surgeon who will rebuild West's breasts. "It's a personal, patient-by-patient question. But since the statistics have shown such a reduced risk, there's no question that more women are opting to get this done."
Jim West wanted his wife, a former Daily Press employee, to get the operation six years ago. Rose had her ovaries and uterus removed then, both to avoid ovarian cancer -- which killed her other grandmother -- and to lower production of hormones that can fuel breast tumors. "The most important thing is her health and for what's left of her family to be together," said Jim West, 43. "This is a long time coming."
A GRIM HISTORY
Rose West hadn't been born yet when her grandmother died of breast cancer at age 55. One of four siblings raised in a small town in western Pennsylvania, West was the baby of the house until her sister Linda McCauley, who was 14 years older, got sick. That's when McCauley's son Karl, then barely a toddler, came to live with West's family while his mother went through treatment.
"It made things interesting to have him there," West said. "I remember switching gears in my mind to helping take care of him. I grew up."
Five years later, 32-year-old McCauley was dead. As time passed after her sister's funeral, West often wondered what the two of them would have been like as adult friends. A gentle, free- spirited woman who worked as a teacher and seamstress, McCauley loved to spoil her baby sister and often sewed her new outfits for school.
"I was still the little sister when she died," West said, tears welling in her eyes. "We never got a shot at that kind of bond."
She didn't get much of a shot with her father, either. Jim McMunn, a diesel truck mechanic for a coal company, was "a long- haired country boy" and an independent type, West said. Nobody really thought the lump in his chest could be cancer because, although men have breast tissue, the disease is far more rare in males.
After surgery, McMunn wasn't afraid to walk around shirtless and bare the red scar on his chest. West, then 17, would wince when she saw it, both in pain for her dad and at the growing realization of the threat to her own life. When McMunn died five years later, he was 55 -- the same age as his own mother when she died of breast cancer.
Four years after that, West's sister Mary Ann Chiodo found a lump just after giving birth to her third child. When she also couldn't breastfeed her baby, Chiodo felt something was very wrong. But while the stay-at-home mom was a direct and action- oriented person, doctors managed to put her off with reassurances that women's breasts often change with pregnancy and childbirth.
By the time Chiodo was diagnosed with an aggressive form of breast cancer, the disease had spread to her liver. She died three years later, at age 35. West alternated between feeling numb and sobbing as she played and replayed the REM song "Everybody Hurts." Suddenly she was the only sibling left; her brother had been in a fatal motorcycle accident the same year Linda McCauley died.
But in her grief, West also started to fight for her life. In 1997, the year Mary Ann died, West took a blood test to see if she had defects in genes that normally keep cells in the breast from dividing uncontrollably. Not surprisingly, she did.
"It sounds strange, but the first thing I felt was a little relief," she said. "It gave me answers about my family's history and some real information to work with. We didn't all grow up on a toxic waste dump -- there was a reason for all this."
Since then, West has had mammograms and seen a surgeon for breast exams every six months. She had her ovaries and uterus removed in 2000. By then, she and her husband had made a final decision not to have children, partly colored by West's family history and her sisters' diagnoses so soon after their pregnancies.
West also has taken a medication called raloxifene that helps block the hormone estrogen from stimulating the growth of breast cancer cells. Recent studies have found that raloxifene, normally prescribed to treat the bone disease osteoporosis, can reduce the risk of invasive breast cancer by about 50 percent.
But all along, West considered herself buying time until the day she'd have her breasts removed. In her mind, she wanted that done before she turned 40.
Then her nephew Karl McCauley got sick -- the same Karl she had comforted as a child and whose memories of his mother come with a hospital bed attached. Last February, McCauley's wife felt a small lump under one of his nipples. Even with his family's history, McCauley admits, he didn't think a 25-year-old man could get breast cancer.
"To be honest, that hurt the worst out of everything that's happened," said Jim West, who married Rose 18 years ago. "My wife and I don't have children of our own, but we are a pretty good aunt and uncle and really close to Karl in particular."
McCauley has had surgery and chemotherapy and will start radiation early next year, and doctors believe he will make a full recovery. But for Rose West, who comforted McCauley's wife while he was in surgery, the diagnosis ended 10 years of hesitation after her genetic test.
Her time, she felt, was just about up. "If this disease was so aggressive that it got to a strong young man like him," West said, "it was going to get to me."
Slowly but surely, advances in genetics are changing how doctors look at people like Rose West. Gene tests now are available for more than 1,300 diseases -- well known and rare -- and researchers are hard at work on complex killers such as heart disease, Alzheimer's disease, diabetes and depression. The promise is to prevent symptoms of a disease before they ever appear.
But that promise can bring two tough choices to patients and doctors. First, do people really want to know if they're at risk for a devastating disease? And second, what should they do -- if there's anything that can be done -- and how aggressive should they be if the answer is yes?
The medical study that has influenced many women in West's position was published in 1999. That year, doctors at the Mayo Clinic in Minnesota studied 572 women who had their breasts surgically removed between 1960 and 1993. Many of the women had a mother, grandmother or aunt with breast cancer or a history of multiple breast lumps. Other reasons for preventive surgery include a previous breast cancer diagnosis or a known genetic mutation.
The study found that surgery sliced breast cancer risk by more than 90 percent and that 74 percent of patients didn't regret their decision (although more than a third weren't happy with how their bodies looked after surgery). Since then, more insurance plans have decided to cover it.
Doctors warn that the operation carries all the risks of major surgery, including infection, blood loss and a bad reaction to anesthesia. Patients who get a breast reconstruction also need a second operation several months later to reshape the tissue. And because breast and fat tissue look similar, surgeons might leave 2 to 3 percent of a patient's total breast tissue in her body.
Typically, women who want preventive mastectomies approach their doctors rather than vice versa, said Dr. Eugene Chang, the surgeon who will be operating on West. They tend to be young people, often mothers, who are "terribly anxious" after watching close relatives suffer through breast cancer, Chang said. Most also are well educated about all their options and any dangers involved.
"This is a very patient-driven operation," he said. "Doctors don't go out and advocate this, but it's true that the data shows a great risk reduction. And who is going to tell a woman, 'I don't think you need this,' and then that woman goes on to get breast cancer?"
Advances in breast reconstruction have made the choice easier for some women, including West. Guarda, the plastic surgeon who will work on West, offers a technique called the Deep Inferior Epigastric Flap, or DIEP Flap (see graphic) that moves skin and fat tissue from the abdomen but spares muscle used in earlier versions of the operation.
With muscle tissue left intact, patients have a lower risk of problems such as hernias and difficulty sitting up. While women still need four days in the hospital and four to six weeks before they can return to normal activity, they experience less pain, Guarda said.
"It really adds up to a big difference in terms of recovery, especially for patients who are having both breasts removed," Guarda said. She added that patients who get breast implants -- an alternative to tissue reconstruction -- can leave the hospital the same day, although their new breasts tend to feel less natural.
Knowing that Obici Hospital offers the muscle-sparing option helped West set a date for her operation. She expects her new breasts to look about the same or slightly smaller, although her appearance is far less important than the peace of mind she expects to find. Asked whether she worries about feeling less "feminine" after surgery, she said simply, "Not at all. It is my life that I value."
West's family is behind the decision. Her mother, who lives in Pittsburgh, is in town and will stay through Christmas. Karl McCauley and his wife, Vina, plan to drive from their Maryland home later this week. "It makes sense, what she's doing," Karl McCauley said. "It's every generation in the family that this illness has hit, at least one person. We want it to stop with me."
Jim West is nervous but hopeful about gaining many more years with his wife, a constant companion on vacations, trips to the gym and visits with friends and family. Their bond, in fact, goes all the way back to a shared hometown and having childhood best friends who were brother and sister.
"I can honestly say Rose has changed my whole outlook on life," he said. "I used to be more conservative, but now I appreciate things more. I just want to enjoy our life together."
Rose West wants that too. And when she's wheeled into the operating room, she'll carry her father and two sisters with her. "They never got the chance to get ahead of this disease like I have," she said. "When I think of it that way, I'm not afraid." *
A FAMILY TRAGEDY
Rose West has seen five close relatives battle breast cancer. Just one is still alive:
Name Relation Age at first diagnosis Year of death Age at death
Mary McMunn Grandmother 45 1960 55
Linda McCauley Sister 27 1986 32
James McMunn Father 50 1990 55
Mary Ann Chiodo Sister 32 1997 35
Karl McCauley Nephew 25 (undergoing treatment)
QUESTIONS ABOUT BREAST CANCER?
To submit questions for Belinda Risher, a breast cancer patient navigator with Sentara Healthcare, send e-mail to firstname.lastname@example.org or call 247-4789. Risher's answers will appear with a future story on Rose West's recovery. Through her job, Risher has helped many local cancer patients and their families throughout the treatment process.
FOLLOW THE STORY
Read an update on Rose West's eight-to 10-hour surgery at Obici Hospital.
Hear West talk about her decision to have a preventive mastectomy at www.dailypress.com/rose.
IN FUTURE WEEKS
Watch for a story on West's recovery, also featuring a Q&A with a local breast cancer expert.