Jen Singer
Jen Singer wasn't concerned. OK, she was having trouble dragging herself off the Serta every morning—but with two small children, it was normal to feel fatigued, right? And those nagging aches? Well, considering that she played tennis and took spinning classes, not all that shocking. Besides, the youthful 39-year-old was still surprised when grocery-store clerks called her "ma'am." What was there to worry about?
So when the New Jersey resident started to feel sharp pain in her shoulder blade, she sucked it up. "Some people would have gone to the doctor," she says. "But I hadn't felt my best in so long—one problem or another was nagging at me."
Soon, though, she was feeling breathless and running a fever. When she finally complained of her symptoms to her primary-care doctor, in May 2007—several months after they began—he diagnosed her with pneumonia and prescribed antibiotics. But two weeks later, Jen was feverish and having trouble breathing, so she went back to the doctor. This time, he referred her to a pulmonologist. Chest X-rays turned up a suspicious mass on her lung, and a CT scan confirmed it was a 15-centimeter tumor. She had aggressive B-cell non-Hodgkin's lymphoma, a fast-growing cancer of the lymphatic system (part of the body's immune system). It's most common in 67-year-old men. "I was scared," she says. "I could sense that something was wrong, but I just kept thinking, 'I'm too young for this.'"
Unfortunately, for many people her age, too young for cancer is a precarious spot to be in. Jen is a member of the disease's orphan generation—young adults left behind in the age of research and increasing survival rates. Because they and their doctors ignore signs that would scream "cancer" in someone older, they often go months without a proper diagnosis. What's worse: When some types of cancer are discovered, they tend to be the types that spread aggressively to other parts of the body, offering a slimmer chance of survival.
Although its biggest risk factor is usually age, cancer is still the top disease-related killer of young adults. According to 2007 estimates, there were more than 75,000 new cases in Americans ages 15 to 39, and the rates for some cancers are rising in that age group even as they hold steady for others.
The picture becomes bleaker when you compare survival rates. In the late 1970s, a 10-year-old diagnosed with cancer had about a 60 percent chance of seeing her 15th birthday; in the 1990s, 75 percent. Over the same period, the five-year survival rate for a 65-year-old leapt from about 45 percent to more than 65 percent. Now consider a 30-year-old: During the disco era they had a 70 percent chance of living for another five years. By the time 'N Sync ruled, that prognosis was still the same.
Clinical trials can help, but a study in the Journal of Pediatric Hematology/Oncology found that for many cancers, there are no trials for Gen-X/Yers. Since there's a link between clinical-trial enrollment and treatment success, young women with cancer are at a disadvantage, says study author Peter Shaw, M.D., director of the adolescent and young adult oncology program at Children's Hospital of Pittsburgh. "Because cancer in this group is more rare, there has been less effort to create new trials," says Brandon Hayes-Lattin, M.D., medical co-chair of the Livestrong young-adult cancer program at the Oregon Health and Science University Cancer Institute in Portland. "Currently, only 1 to 2 percent of twentysomethings participate in trials, compared with 50 percent of children."
But researchers are trying to play catch-up. In 2006 the National Cancer Institute and the Lance Armstrong Foundation banded together to form the Livestrong Young Adult Alliance, a coalition of about 106 organizations trying to figure out why young adults' prognoses haven't improved. Scientists are studying the characteristics of the cancers most common in young adults, such as melanoma, to determine whether they respond to treatment differently in this age group than in others.
The good news: If you're a young woman, you're unlikely to get cancer. But if you do, you can avoid falling into the gap between diagnosis and effective treatment.
Tune in to your body's signals
Katherine Miller
Like Jen Singer, many twenty- and thirtysomethings lead active lives—and it's easy to chalk up fatigue or odd aches and pains to triathlon training or running after a toddler. Take Katherine Miller, a first-year medical student at Des Moines University and a competitive swimmer and cross-country runner. In February 2005, Katherine called her mom complaining of abdominal pain that had been bothering her for months. The physician's assistant at her school's clinic had brushed it off as irritable bowel syndrome worsened by the stress of school. But the cramps were growing worse.
Irene Miller told Katherine to book an appointment with a specialist and hopped the next plane from her home in Florida to Des Moines. But by the time she arrived, Katherine had changed her mind about seeing a gastroenterologist. "She said, 'I'm starting to feel better, Mom,'" Irene recalls.
The reprieve was short-lived. Less than a month later, the pain returned with a vengeance, prompting her to rebook her appointment with the gastroenterologist, whom Katherine convinced to order an ultrasound after she was given yet another IBS diagnosis. Katherine got the devastating results on March 23, 2005—her 26th birthday and more than six months after her symptoms began. She had stage IV colon cancer. A 10-centimeter tumor had spread to her liver.
Within a week, she was undergoing aggressive chemotherapy at New York's Memorial Sloan-Kettering Cancer Center, the doctors were not encouraging. "The most they would say was that her cancer was treatable," Irene says. "I now know treatable is a lethal word." Katherine died in September 2005. "Had she gotten help earlier, she might be here today," Irene says. (Des Moines University has since launched the Katie Miller Young Adult Cancer Conference to raise awareness of the issues young-adult cancer patients face.)
Know that your doctor is not always right
Bridget Mooney
Bridget Mooney was 21 and focused on finishing her last semester at Boston University when she felt a tiny lump in her breast. It never occurred to her that she might have cancer, so she waited for her yearly pelvic exam six weeks later at a nearby health clinic to mention it.
"I do feel something," the nurse practitioner told her during the exam. "I could send you for follow-up testing, but because you're so young, I wouldn't recommend it." Having her dismiss the lump was a relief for Bridget. Over the next three months, she rarely thought about it. But when she casually brought it up to her mother during graduation weekend, she insisted Bridget fly home to Baltimore for a second opinion.
"I thought she was being paranoid," Bridget says. "Even the ultrasound technician said, 'Don't worry. I've been doing this for 20 years and I've never seen cancer in someone your age.'" But afterward, as doctors discussed her test results in whispers, Bridget had a feeling something was wrong. When her doctor ordered a mammogram and a biopsy, she prepped herself for the worst.
It came the next day, when she was standing in line at Starbucks and her cellphone rang. Stage IV breast cancer. Three years later, she's still being treated with aggressive chemotherapy.
Jen Singer also believes that doctors would have diagnosed her sooner had she been older. "The oncologist shocked me when he said I'd probably had the tumor for about eight months before they found it," Jen says. "Lymphoma symptoms are vague—fatigue, swollen glands, and fever—so doctors tend to think, 'You're a mother. Of course you're tired.'"
Unfortunately, even young women who simply push for more testing may have to battle with their insurers to pay for it, particularly if they have no family history of cancer. For example, most insurance companies recommend annual mammograms for women over 40. Yet according to a report in the online journal Breast Cancer Research, early detection is even more critical for young women, in whom malignant breast tumors tend to be more aggressive. If your insurer refuses to cover a necessary procedure, contest the case and ask your doctor to support your claim. Most policyholders who challenge a decision will get at least partial coverage.
Guard your loins
Michele Kerher
Treatments like radiation and chemotherapy can throw a young woman into early menopause—a big concern among patients of childbearing age. Yet oncologists don't always mention it or discuss alternatives. When Michele Kerher's marriage ended, in the fall of 2007, the Chicago physical therapist, then 35, back-burnered plans for kids. "I figured I still had time to get remarried and start a family," she says.
But three weeks after her separation, Michele was diagnosed with an aggressive form of breast cancer that had already begun to spread to her lymph nodes. She was shocked to learn that the plan her doctor suggested (a lumpectomy and removal of some of her lymph nodes plus 12 weeks of chemo) could destroy her eggs. "My doctor didn't mention it," she says. "A friend tagged along to an appointment and asked, 'What about Michele's fertility?' It was like an afterthought to him."
So before beginning chemo, Michele started the process of storing her eggs: injecting herself with hormones to put her ovaries into overdrive for a month, then having the dozen eggs she produced extracted and frozen. (The procedure is not covered by insurance.) Her periods resumed after her chemo ended, but she doesn't know if her eggs are intact. "I'm glad I took the precaution," she says.
Michele's experience is typical. Studies show that as few as half of childbearing-age women are advised about fertility before treatment. That may change. In 2006 the American Society of Clinical Oncology published guidelines for addressing fertility options with patients. And more treatments are being developed that can KO cancer without harming your chances at pregnancy. Just 10 years ago, the typical treatment for cervical cancer was a complete hysterectomy. But a new procedure, radical trachelectomy, leaves enough of the cervix behind for women to conceive, carry a fetus, and deliver.
Find a program designed for you
Jodi Cooper
Mainstream cancer centers tend to be filled with very young patients (like Lego-loving third-graders) or very old ones (think retirement-community residents). When you're the only one with a busy social life or a preschooler at home, it can be hard to find support.
When a physical turned up a lump in Jodi Cooper's breast in 2005, her biggest hurdle was psychological. She worried about how the treatment—a lumpectomy followed by aggressive chemo and seven weeks of radiation—would affect her appearance and social life. "Losing my hair was the worst part," the 34-year-old Los Angeles resident says. "I thought, 'Who would want to date a bald woman who has cancer?'"
As one of the youngest patients at her treatment facility, Jodi also felt socially isolated. She recalls an 84-year-old in the waiting room who tried to console her by saying, "I know how you feel."
"I thought, 'You have no idea how I feel!'" Jodi says. "She was married, had adult children, and had lived a full life. I wanted to meet someone and have kids, and had just learned I might go into menopause after treatment. I felt like damaged goods."
At the time, her doctors didn't know of any support groups for young adults. But after her treatment ended, Jodi tracked down other young women with cancer and offered her support. "I sat with them during chemo sessions," she says. "I wanted them to have what I didn't: the knowledge that they were not alone." Later, a family member told her about Imerman Angels, a group geared toward young adults who are cancer fighters, survivors, and caregivers.
Finding a treatment center designed for young adults can also make a difference in your recovery. There are about 10 such facilities in the U.S., including the Dana-Farber Cancer Institute in Boston, the M. D. Anderson Cancer Center in Houston, the Adolescent and Young Adult Oncology Program at the Oregon Health and Science University Cancer Institute in Portland, and the Adolescent and Young Adult Cancer Center at the Cleveland Clinic in Ohio. "Compared with older adults, people in their 20s and 30s may metabolize chemotherapy drugs faster or have a better tolerance for higher doses, which would have an impact on the course of treatment," Hayes-Lattin says. On the other hand, there's evidence that chemo may weaken the heart, making younger patients more susceptible to long-term cardio risks that someone in her 60s wouldn't live long enough to need to worry about. Doctors familiar with these risks can recommend follow-ups with a cardiologist. These centers also focus on lifestyle issues unique to young adults, including access to fertility experts and genetic counselors.
After receiving treatment in Baltimore, Bridget is back at Dana-Farber. "Being here makes me feel normal. We talk about cancer, sure, but we also talk to each other about dating and writing a résumé," she says. "It's a relief knowing everybody can relate."
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