When cancer hits early
Amy Babst woke up in the middle of a summer night, and for 15 minutes, she was barely able to breathe. She called 911 and was rushed to the hospital, where a chest X-ray determined that she had a "ginormous" tumor squeezed between her lungs, she says. A biopsy later determined that the mass was malignant.
Four days later, on June 16, 2008, Babst gave birth to her first child. When the newborn, Kira, was just three weeks old, her mother started chemotherapy.
"It was awful," says Babst, 25, of Linthicum, who now is in remission.
"I slept through most of the first year of my baby's life. I had to stop breast-feeding her when I began chemotherapy. The opportunity to bond with my child was taken away from me. I worried that I wouldn't live to see her grow up."
While Babst's medical needs were taken care of by the doctors and nurses at the University of Maryland Medical Center, she found few resources available to help her cope with the issues she faced as a young mother battling cancer. Because the vast majority of cancer patients are retirement age or older, most support services are focused on the challenges faced by an aging population.
But a recent development is helping to place a new focus on the problems experienced by young adults with cancer.
A study released this summer in the medical journal Cancer calculated for the first time the number of cancer survivors in the U.S. who are also raising children.The study's authors — Kathryn Weaver, Julia Rowland, Catherine Alfano and Timothy McNeel — estimate that 1.58 million cancer survivors living in the U.S., or 14 percent of all cancer patients, are caring for 2.85 million children. And these offspring may themselves be at risk for developing emotional problems stemming from their parents' illness.
"We hope by documenting the significant number of families affected, greater attention will be given to the identification of these potentially at-risk groups," the authors wrote.
Even members of the public who don't subscribe to medical journals may be more aware of the plight of these young families, thanks in part to a new Showtime cable series, "The Big C." Laura Linney portrays a mother trying to deal with stage 4 melanoma while trying to raise her surly teenage son.
The authors of the study estimated that of the 2.85 million kids, about 24 percent are younger than 5, 38 percent are between the ages of 6 and 12, and 36 percent are 13 to 17.
"The needs of families with teen-aged children are likely to be different from the needs of families with very young children," the authors wrote.
If young adults with cancer are in some danger of falling through the cracks of the medical establishment, that's partly because there are comparatively few of them.
The roughly 70,000 U.S residents ages 18-39 who are diagnosed with cancer each year represent just 5 percent of the total population of cancer patients, says Elizabeth Sayers, a patient navigator for the Columbia-based Ulman Cancer Fund for Young Adults.
Being a member of this small group carries disproportonate risks. While five-year survivor rates for both children and seniors have shown a dramatic improvement during the past three decades, the prognosis for young adults ages 18-40 — the prime childbearing and child-rearing years — is virtually unchanged.
"Thirty years ago, you had a better chance of being diagnosed with cancer as a young adult than you had if you were diagnosed with cancer as a child," Sayers says "That's no longer true. This is a group that is understudied and underserved."
Several factors may contribute to the widening gap:
Young people feel invulnerable, and may not consult a doctor until their symptoms are serious and their cancer is relatively advanced. When those in their 20s and 30s do seek medical help, a cancer diagnosis might be further delayed because the disease is seen so rarely in their age group. That causes further problems, because cancer frequently is more aggressive and complex in young adults, and is more difficult to treat.
"Every problem that cancer survivors has gets magnified for young adults," Sayers says. "For several of my patients, a diagnosis of cancer is the least of their problems."
Treating cancer has the potential to wipe out a family's savings under the best of circumstances, but young adults are more likely to be in financially precarious shape than are their older counterparts. Often, members of this age group hve no health insurance, or if they do, their coverage is inadequate.
For example, Lynette Stevens, 22, of Baltimore, was just setting herself on a career path last October when she she began experiencing dizzy spells. The single mother of a 4-year-old girl, Stevens was about to start college to study to become a medical assistant when she was diagnosed with first-stage leukemia.
She had health insurance, but as she unhappily discovered, it paid only about half of the cost of her treatment. Stevens is afraid to total her medical bills, but she says they come to six figures.
"Every day, another bill comes in the mail," she says. "I have absolutely no idea what to do. I'm in a job training program, but I don't know if I'll ever be able to pay off my debt. I'm lost right now. I'm sure there are resources out there that could help me, but I have no idea what they are."
And too frequently, the medical establishment simply isn't tuned into the problems faced by young adult cancer patients. For instance, chemotherapy and radiation treatments can leave patients infertile — a side effect that is critically important to patients in their 20s and 30s, but one that physicians too easily overlook.
"It's a fast process," says Brock Yetso, the Ulman Fund's executive director. "You are diagnosed with cancer today, and you start chemotherapy tomorrow. You're 28 or 29 years old, you finish treatment, and you're suddenly going through menopause. And no one ever told you, 'If you take these drugs, you can't have kids, and you never will.' "
Babst, the Linthicum mother, was warned that it was unlikely she would ever have more children. At best, she was told, she wouldn't become pregnant for at least half a dozen years.
But just three months after Babst finished radiation therapy in February, 2009, she skipped her period.
"When I called my doctor to tell him I needed a pregnancy test, he dropped the phone," she says.
"The radiation was supposed to stay in my system for three months after my last treatment, and I was just out of that window, so I worried that it might still affect the baby. And because I was pregnant, I couldn't have scans to determine if my cancer was returning."
But, Babst's bloodwork consistently came back normal, and monthly sonograms continued to show that the fetus was developing normally. On Jan. 29, she gave birth to a healthy baby girl, who is named Khloe.
"As bad as having cancer was, it would have been so much worse if I hadn't had these beautiful baby girls to smile and make me laugh," she says. "I call Kira my angel, and Khloe is my miracle baby."