Iris Byrum told her three grown daughters what she was going to do before she did it.
She broke the news in person, and though she also wanted to tell them what they should do – scream to them not to take any chances with their health – she bit her tongue and remained calm, as usual.
Her own body already had been ravaged twice by an aggressive breast cancer, weakened by the poisons needed to beat it back.
Tissue from her abdomen filled the hole in her chest left by a radical mastectomy. A scar marched across her hips, where surgeons had harvested the flesh and a small crater gaped under her collarbone, where they had carved away a second tumor.
The cancer was 10 years gone but could return at any time.
Byrum didn’t want to go through that again. She didn’t want her daughters to go through that ever – but knew full well that they might. All she could do was try to prepare them.
So Byrum, an operations supervisor with UPS, tracked down Helena and Angie at Angie’s house in Suffolk. She caught up with Mindy at home.
She announced that she was going to find out if cancer ran in the family.
If Byrum tested positive for a gene mutation, her chances of another bout with the disease would rise, and she’d have to ratchet up her defense.
A positive result also meant each of her girls would be faced with a decision: Did they want to know whether they’d inherited the curse?
“At first we were all gung-ho,” said Helena Byrum, the eldest. “Who wouldn’t want to know what their fate is?”
Byrum’s first tumor appeared in 1996 with the suddenness and severity of a gunshot wound.
She was 40 years old and had been in and out of hospitals her whole life. When she was a teenager, doctors implanted a steel rod in her back and encased her in a body cast to correct scoliosis.
Maybe that was why she became the kind of woman who always did the recommended health checks.
In this case, her fastidiousness probably saved her life. Byrum herself found the lump in her breast, less than three weeks after a clean mammogram.
The cancer, already almost the size of a golf ball, was advanced. Her doctors classified it as Stage 3, bordering on Stage 4, the most severe.
Her teenage daughters asked, “Are you going to die?”
Not if she had anything to say about it. A surgeon removed Byrum’s right breast and 19 lymph nodes, to be sure cancer cells hadn’t broken away from the tumor and traveled through her body in her lymph system. Thankfully, her lymph nodes showed no sign of the disease.
Byrum underwent seven months of chemotherapy, but her hair didn’t fall out that time. She kept working, and most people didn’t know she was sick.
In 1997, she found another lump.
This one was a monster, rising ominously under her collarbone. Byrum’s doctors warned about the possible need to remove her collarbone and cut the nerve in her right arm.
Luckily, they didn’t have to go to such extremes. When she awoke from surgery, she could still move her arm. At first, she was horrified, thinking the surgeons hadn’t cut away the tumor, but the nurses quickly assured her that it was a victory.
This time, the treatments pummeled her body for two years. She lost weight, her hair and her fingernails. High-dose chemotherapy made her vomit constantly. She moved to Richmond for six weeks to undergo an experimental stem-cell transplant.
Her husband, Ricky, was working as a longshoreman, and Helena had moved out of the house. Ricky’s brother’s wife, Kim, cared for Byrum. Angie, the middle daughter, cooked her mother’s meals, drove her to chemo treatments and to the emergency room on weekends.
“I maybe saw Mom cry twice,” Angie remembered. “If I was her, I probably would have been crying all the time.”
It took another year for Byrum to begin to feel like herself again.
Even then, she needed to monitor her body closely. Every six months, her blood was tested, her chest was X-rayed and her bones were scanned.
Around that time, Byrum heard about gene mutations that increase cancer risk and wondered if she might have one. In one in 10 patients, cancer is related to a hereditary cause.
The most common mutations causing breast cancer occur in genes called BRCA1 and BRCA2, short for breast cancer susceptibility genes one and two. The genes are supposed to work as tumor suppressors. Inherited mutations in those genes account for an estimated 5 to 10 percent of breast cancers and 10 to 15 percent of ovarian cancers among white women in the United States.
For women who inherit a harmful mutation, the lifetime risk of developing breast cancer is as high as 80 percent, compared with 12 percent for women in the general population. Risk for ovarian cancer is 15 to 40 percent, compared with 1.4 percent. Men with a deleterious mutation on either gene also are at increased risk for breast and possibly other cancers.
Additionally, cancer survivors with a damaged BRCA gene are more likely to develop a new tumor in the breast, ovaries or other site associated with those genes.
Byrum wanted to know if the odds were working against her and her daughters – or even her mother and nieces.
Her family’s cancer history would have provided a clue, but Byrum didn’t know much beyond the fact that her father had died of lung cancer the year before her first diagnosis. Her aunts and uncles were much older than her parents, and no one discussed the specifics of their health.
“It was almost like a secret,” she said.
Intrigued, but cautious, Byrum decided to wait to be tested. She wanted to be sure laws barred insurance companies from hiking premiums or dropping coverage for people with the mutations. She also wanted to be sure the tests were accurate.
In 2008, her doctor said it might be time.
Byrum knew she was opening a can of worms as far as her family was concerned. That’s why she told them all beforehand. If she tested positive, everyone from her sister to her grandsons could carry the gene mutation.
But Byrum was ready for answers. Did her cancer have a source? Was it a fluke? Was it a rogue gene? Could she have passed it on?
She had a feeling about it, and her feelings usually were right. Still, waiting for the result felt a lot like waiting to learn how far her cancer had spread.
The news, when it came, didn’t surprise her. Byrum had a BRCA1 mutation, and she immediately decided to have her left breast and ovaries cut away.
“I was armed with information that was going to prevent me from – hopefully – prevent me from ever having to go through cancer treatment again,” Byrum said. “It was life-saving information, and I was going to use it.”
Two months later, waiting outside the genetic counselor’s office at Virginia Oncology Associates, Helena told her mother about her bargain with God.
If one of the three daughters had to be positive, Helena wanted it to be her.
Angie and Mindy both had children. Helena didn’t. If her sisters were positive, they’d have to worry about whether they’d passed the mutation on to their kids. Helena’s next generation – and its genes – was still a blank slate.
Also, Helena felt she was the most like their mother. She believed she’d inherited her mother’s strength, along with her brown eyes and generous spirit. They even shared a name: Iris Helena Byrum.
They both liked concrete facts.
All three daughters supported their mom’s decision to have the surgeries. They approached the problem differently when it came to themselves.
Helena, who was in her early 30s, figured she would get the test. If the result was positive, she’d go from there.
Angie, two years younger, was caring for a fussy infant. She didn’t want anything else big to worry about: “I thought it would be weird to know.”
Mindy, four years younger than Helena, had more time before the decision became pressing.
Taking the test was easy, Helena found: you just give a little blood. Waiting for the results turned out to be much more difficult.
It was all she could think about: “If I become positive, what do I do? If I become negative, then I don’t have to worry about it. But what if, what if…,”
By the time she finally found herself in the waiting room with her mother, Helena’s anxieties boiled over in tears. Unusual; she normally didn’t cry.
The wait seemed like forever.
Let me be the only one, Helena thought. Let me be the only one.
Byrum said nothing. Though she knew it was absurd, she felt responsible. It weighed on her heart, as a mother.
Let it be negative, Byrum thought. Let it be negative.
Tifany Lewis, the genetic counselor, called them back and asked Helena how she was doing.
“OK,” Helena said. “A little nervous.”
She told Lewis she was all right with whatever happened next.
Lewis told her the result:
Helena doesn’t remember much about what happened next.
The tears struck again.
Helena knew the genetic counselor was talking. She tried to concentrate on the words but understood nothing. Lewis’ voice sounded like the muffled-horn noise of adults in Charlie Brown cartoons.
Later, Helena realized that she felt the way people often do when they learn that they have cancer. It was how her mother had felt that second time.
This time, Byrum’s heart was breaking. She wanted to cry, but she knew she needed to be a rock. She reached out her hand to her daughter as Lewis went over charts and described risk.
In later appointments, Helena’s doctors outlined her choices. She could monitor her body through extensive checks every three to four months: mammograms, MRIs, CT scans, ultrasounds, blood tests.
Or she could submit to a double mastectomy and have her ovaries taken out. That would lower her risk for both breast and ovarian cancer to that of the general population.
But concepts like risk and probability proved maddeningly esoteric when Helena tried to apply them to her own flesh and bones.
With each year she lived, she became more likely to develop cancer. That argued for bold action now.
On the other hand, some women with a deleterious mutation never developed cancer. What if she allowed herself to be cut up for no reason?
Like many in her position, Helena first chose the screening option.
For about nine months, she regularly took time off from her job as an office manager for a construction company to sit in waiting rooms and worry about test results. But the stress started to get to her.
Two major obstacles stood in the way of surgeries: Helena still wanted to have a child, so she needed her ovaries. And she wanted to breast-feed.
Only her mother could change her mind about a mastectomy. Byrum told Helena that not being able to breast-feed didn’t mean you were a bad mother. But if Helena developed breast cancer while she was pregnant, that would be a serious problem.
“Do you want to have a baby and raise it?” Byrum asked. “Or do you want to have a baby to breast-feed it?”
The answer was clear, though not easy.
Helena had always been athletic. She didn’t like the thought of mutilating her body, which was what a mastectomy seemed to do, euphemisms aside.
She was so trim that doctors couldn’t even use her own body fat to build new breasts after the surgery. She just didn’t have enough.
In September 2009, Helena had a double mastectomy.
Recovery was tougher than she expected. She rested in her Virginia Beach home for a month and, at first, wasn’t even strong enough to push a fan’s plug into a socket.
Her mind teemed with second thoughts: What did I do? Why did I do this? Did it really happen? Did they really tell me I was positive? Did I make all of this up?
depression weighed her down and stayed until her doctor called one day with news.
They had found precancerous cells in the left breast after it was removed.
“I knew right then that I definitely did the right thing.”
These days, Helena thinks a lot about timelines.
She’s 37, two years beyond her original target age for having a child. Then there’s the ovarian-cancer risk, which continues to increase as she nears 40.
Ovarian cancer is a tricky animal. It’s less common and, in its early stages, less deadly than breast cancer. But it’s also more difficult to find. By the time the disease is detected, it might be too late.
Twice a year, Helena takes time off from her job as an assistant accounting manager to get an ultrasound, and occasionally her doctors will order blood work to check on her ovaries. They don’t pressure her, but they do remind her that precious time is passing, especially after they removed a growth in her uterus last November. It turned out to be nothing.
After Helena got tested, Angie and Mindy did, too.
Angie did it suddenly, almost on a whim, one day in her gynecologist’s office.
She was relieved to learn that she tested negative but felt almost guilty telling Helena about it. Angie thought maybe her role was to be there for her mother and sister.
The more she thought about it, the more she realized that, while it was good news, it didn’t mean she was in the clear. She probably has the same chances as anyone of developing cancer – or any other health problem.
“There’s always something,” said Angie, who is 35.
Mindy, who is 32, tested positive. She is still considering her options.
Helena faces important choices. She has wanted a child ever since she can remember. Her sisters’ boys call her “NeeNee,” and she’s a natural with them, wrestling and playing Nerf darts.
But if Helena has a baby, she could pass along her gene mutation and the agony that goes along with it. Or maybe she wouldn’t.
Helena takes comfort in the thought that scientific advancements could make the whole process less painful decades from now, when her grown child could face a predicament like hers.
She has a little time to make her decision.
Her mother is standing back, ready to step in whenever needed.
“Whatever decision she would make,” Byrum said, “I completely support her, 100 percent.”
Amy Jeter, 757-446-2730, email@example.com
More than 30 tests are available
Cancer in most patients isn’t associated with an inherited gene mutation.
However, Hampton Roads patients can find out if they carry a gene mutation that increases their cancer risk at Virginia Oncology Associates’ risk reduction clinic.
People with several family members with the same type of cancer or family members who developed the disease when they were younger than 50 might benefit from genetic testing, said Dr. Ranjit Goudar.
At the clinic, a patient first sees Goudar or another oncologist to compile a detailed profile of the patient’s health, family medical history, lifestyle and past. Based on that information, the doctor will determine whether one of more than 30 genetic tests could be appropriate.
If testing is an option, the patient generally will consult with a genetic counselor, such as Tifany Lewis. Together, they’ll discuss the test and how results could affect the patient and family members.
The tests range between a few hundred to several thousand dollars, and most health insurance plans cover most tests.
Whether or not results are positive, Goudar works with patients on ways to stay cancer-free.
“Trying to prevent cancer is the real goal,” Goudar said. “That’s ambitious, but it’s very doable.”
- Amy Jeter