Breast cancer survivors race for a cure
Krysti Hughett turned 50 last week. A milestone dreaded by many, it was one she feared she wouldn’t reach.
“I never thought I’d see this day,” the Indianapolis woman said, getting a little weepy on the way to meet friend April Lashbrook for lunch on their shared April 8 birthday.
They’re joined by another link: breast cancer.
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“I never asked my doctors how long I had (to live),” said Hughett, diagnosed in 2005 with metastatic inflammatory breast cancer, an aggressive and rare form that doesn’t show up on mammograms.
But she finally checked online, and the answer wasn’t good: typically six months.
Hughett, currently in a clinical drug trial, says she now is shooting for 75. Several weeks ago, she was strong enough to hike three miles up a Tennessee mountain and go horseback riding. This morning, she joined 2,500 other breast cancer survivors wearing pink shirts, hats and boas in the emotional Pink Parade preceding the Susan G. Komen Indianapolis Race for the Cure.
The 5K race/walk Downtown was expected to draw more than 40,000 people and raise $2.6 million to support national research grants and local nonprofit agencies that provide breast cancer education and mammograms.
“When you’re survivors, the race gives you hope,” said Hughett, who first participated after a friend’s mother got breast cancer but before she herself was diagnosed.
You also will find Hughett rowing with the Indy Survivors Dragonboat team that competes with other survivor teams and fly-fishing for a weekend with survivors as part of the national Casting for Recovery. She organized Breast Friends, a local support group, and speaks as a patient advocate at cancer research conferences.
Since a rash and enlarged breasts signaled her cancer, Hughett has faced fate head-on with willpower and knowledge, mixed with an unflappable sense of humor.
“I sort of made breast cancer my life,” said Hughett, who works full time here for the national Young Survivors Coalition, organizing a support group and teleconferences among survivors. “I decided if I was going to beat the beast, I had to know the beast.”
Her “beast” is a tough one to beat.
Inflammatory breast cancer doesn’t cause lumps but grows in the skin in sheets, so by the time it’s detected, it’s typically in stage 3 or 4, the later stages that are harder to treat.
Hughett had chemotherapy for four months, then a bilateral mastectomy in July 2005, followed by twice-a-day radiation treatment for a month. In April 2006, she went to a New Orleans facility that did a breast reconstruction using skin from her belly. Later, doctors found the cancer had spread to her lungs.
She often finds humor, even in her plight. When she spoke at the official opening of the St. Charles Surgical Center in New Orleans, she recalled saying, “I’m from Indiana, but my cleavage is from New Orleans.”
On her birthday, Hughett laughed and joked with staff at the Indiana University Simon Cancer Center, showing off the pink cowboy hat she got on vacation. But she was nervous, too. A recent scan showed the cancer cells in her lungs had grown. If they were too large, she couldn’t continue the biological drug therapy she started in September that directly targets those cancer cells.
Christy Brown, a nurse at the center, told her the growth was not large enough to remove her from the clinical trial.
“Yes! Thank you so much,” Hughett shouted, raising her arms and then hugging Brown. Hughett is one of only 100 women in the trial nationally with metastatic breast cancer.
Hughett, who gladly got another dose of chemo on her birthday, doesn’t mince words about her condition.
“I don’t have a lot of options left. The more you’re treated, the more different drugs you’re on, usually the less effective they are. Once you’re out of drugs, you’re pretty much dead.”
Hughett remains optimistic, yet realistic.
“I can put my head under the covers and cry, or leave it to God and make a conscious decision to do everything I can and enjoy every minute I have,” she explained. “I decided I’m going to do everything I could with the time I have left.”
When 2,500 breast cancer survivors march through pink balloon arches this morning before the Race for the Cure, Jeff Van Paris will be wearing his pink boa like all the female survivors.But as a male breast cancer survivor, he’s used to being in the minority.“It takes people aback a little bit,” said Van Paris, 47, a fourth-grade teacher at Clarks Creek Elementary School in Plainfield. “Yes, I tell them, men can have breast cancer.”
The lifetime risk for men of getting breast cancer is about one-tenth of 1 percent, according to the American Cancer Society. In 2008, the group estimated 1,990 new cases occurred in men, and 450 men died of the disease.It is so rare among men that his family doctor didn’t suspect cancer when Van Paris noticed a half-dollar-sized lump under his right nipple in the spring of 2005. Even after a mammogram, doctors thought it wasbreast tissue.At first, Van Paris dismissed it, too. But his wife insisted he look into it more, especially after the lump changed in shape and became more sore.Finally, he sought the advice of a surgeon, who agreed to remove it in January 2006.“I went (into surgery) thinking it was just a lumpectomy,” said Van Paris, who has taught school for 21 years. “Two hours later, I was wheeled up to the hospital room after having had a radical mastectomy and removal of 17 lymph nodes under my right arm, three with cancer.”He was left with a slight indentation and no nipple. Emotionally, he accepted it quickly.“Even when I found out I had cancer, I never thought I would die,” he said. "I thought, ‘They got it out. Now how do I make sure it doesn’t come back?’ "The surgeon told Van Paris he thought he had removed all of the cancer, but Van Paris still went through eight sessions of chemotherapy and 28 sessions of radiation.Within a week of surgery, he was back at school and rehearsals at the Hendricks Civic Theater, where he is a choreographer, actor and dancer. “It gave me something to keep my life in normalcy and keep my mind busy.”While getting through the treatments wasn’t easy, Van Paris said he has dealt with the cancer in a matter-of-fact way. “A big way to deal with the whole issue is being able to joke and laugh, even though it is so serious.”As a male, he found it odd that not only did he have breast cancer, but it was the type called hormonal receptive positive, which menopausal women get.Now, his life is back to normal, though he sees his oncologist regularly to check his lymph nodes and blood. He also takes Tamoxifen, a drug that reduces the risk of breast cancer returning.Even though he may be among very few male survivors each year, he looks forward to walking the Race for the Cure.“It’s a peaceful morning,” he said. “There are so many people there encouraging you.”And he doesn’t mind wearing pink.
The end of the semester was looming for Laurah Turner Jones, a 26-year-old doctoral student in biological anthropology at Indiana University.Last November, a routine ultrasound found a dark spot, like a shadow, on one of her breasts. But that had happened before, and it turned out to be nothing.This time it was something — a recurrence of the breast cancer that surprised the Indianapolis triathlete and marathoner at age 22.
Since the second occurrence came 41/2 years after her first bout, her insurance wouldn’t cover the costs. In order to be considered a new diagnosis, the cancer has to occur five years after the original one. She didn’t have insurance for the first.But Jones, diagnosed with DCIS, a noninvasive type that develops in the milk ducts, wasn’t about to let this slow her fast-paced life.Her doctors found for her a clinical trial using partial radiation therapy. Typically, she would have had to get five doses weekly for five to seven weeks. Under the trial, she got radiation more closely targeting the specific cancer site twice a day for five days in early December.“The next week was finals week. Because the treatment was so short, I was able to finish my semester,” said Jones. “I was really tired, but I recovered incredibly fast.”Three weeks later, Jones placed third overall for women in an 11-mile loop of a 50K race.Nurses and doctors at the Bloomington Radiation Oncology Center credit her quick recovery to her athletic training and a diet high in iron and potassium, which helps when going through radiation. She eats a lot of yogurt, plus leafy green vegetables and other vegetables.Her strict diet is part of her regimen to train for a full Ironman in Louisville on Aug. 30. That’s a 2.4-mile swim, a 112-mile bike ride and a 26.2-mile marathon run.Jones had been a recreational runner. But after her initial diagnosis, and the resulting lumpectomy and reconstruction, she pursued her goals with a new zeal. Academically, she decided to get her doctorate and then research breast cancer. She got involved in the Young Survivors Coalition here with fund-raising and riding the 220-mile Tour de Pink bike race.She has qualified for the Boston Marathon and often places high among female competitors in shorter triathlons. For today’s race, she hopes to finish among the top three women in the competitive 5K race.She hopes, too, her doctoral research can help other women by shedding light on diet and estrogen levels in different stages of women’s lives and the link to breast cancer in urban areas.Despite her two bouts with cancer at a young age, Jones says that if she had to get breast cancer, she got the most treatable type.“I continue to be lucky.”
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