Matthew Zachary was 21 when his left hand quit working. After months of misdiagnoses, doctors found a brain tumor. Specialists treated his cancer, which hasn’t recurred. But the experience changed him irrevocably. “I lost my life, but I didn’t die,” he says.
“When you are a pianist and a composer, you use both hands,” he says. “Also, I am left-handed.”
Many of his friends drifted away, in part because they couldn’t handle his cancer and also because they were ready to move on, even when he couldn’t. He lost a lot of weight, and his hair, and he lived on a liquid diet for six months. He needed 17 medications to manage the side effects of radiation.
All that was bad enough. Even worse was his persistent feeling of isolation, both while he was in the hospital and during the years that followed. There was no one he could talk to about his fears, no emotional support for people in his age group. “I was miserable, anxious, depressed and moribund,” he says. Moreover, hospital settings were not designed for cancer patients in their 20s who were too old for toy-filled pediatric wards and too young for the nondescript rooms that seemed more suitable for older patients. Although he wasn’t hospitalized for long periods, he recalls spending a week in a hospital room “full of 80-year-olds,” he says.
“There was nothing,” says Zachary, who had to move to Staten Island to live with his parents while under treatment. “I don’t say this angrily. This was the 1990s, and those systems just didn’t exist.”
Fast-forward to Jennifer Torres, 35, a mortgage analyst in Fort Worth, diagnosed last fall with colon and rectal cancer. She underwent surgery, chemotherapy and radiation, and spent six weeks at Baylor Scott & White Medical Center. Unlike Zachary, she stayed in a small wing that underwent a $2 million renovation to accommodate adolescents and young adults with cancer.
The rooms are sunny and spacious. There is a message wall where patients can write encouraging notes for one another. The wing has WiFi and smart televisions along with a large lounge area with game tables and a coffee bar geared to getting patients out of their rooms and mingling with their peers.
Most important, Torres had access to an advocate called a “nurse navigator,” a social worker and others trained to help her deal with the social, financial, physical and emotional aspects of being a young adult with cancer.
“They helped me stay positive,” she says, choking up. “It made me feel special. You get to know these people so well. You develop a bond. It made such a difference in my getting better.”
Of the estimated 1.7 million new cases of cancer that are diagnosed annually, about 70,000 involve adolescents and young adults, according to the National Cancer Institute.
Adolescents and young adults with cancer, often called AYAs, have been an in-between, often forgotten population. Groups that advocate for them argue that research, treatment and survival rates have not kept pace with those of young children and older adults.
“We are the invisible cancer generation,” Zachary says.
Furthermore, this group has age-specific concerns, including body image, sexuality, fertility, relationships, education and career.
“They have needs that are not met by pediatric and adult facilities, so they fall between the cracks,” says Lori Wiener, a social worker at the National Cancer Institute, who has studied their psychosocial support needs and wrote a guide aimed at helping them cope.
“When you are diagnosed with cancer at this time in your life, it can be especially devastating,” Wiener adds. “Your vision for the future becomes radically altered.”
Maria Olsson, a clinical nurse specialist in cancer rehabilitation at Sahlgrenska University Hospital in Sweden, recently conducted a study asking young Swedish cancer patients to describe how they felt about their sexuality and body image. Most of them said they felt unattractive — because of surgery scars — and sexually inadequate.
“They feel dissatisfied with their sexuality and dislike their bodies,” she says. “The scars remind them of the disease and the difficulties they’ve experienced. That’s why they need more counseling and psychological support.”
The incidence of specific cancers in this population varies with age. For example, young adults are more likely than other people to be diagnosed with Hodgkin’s lymphoma, testicular cancer and sarcomas, according to NCI. Leukemia, lymphoma, testicular cancer and thyroid cancer are the most common cancers among 15-to-24-year-olds. Among 25-to-39-year-olds, breast cancer and melanoma are the most common.
Young adults diagnosed with a cancer that more often occurs in children and adolescents — such as brain tumors, leukemia, osteosarcoma and Ewing sarcoma — often end up under the care of a pediatric oncologist. Those with cancers more common in older adults are often treated by a regular medical oncologist. For this reason, they often land in inpatient settings where they feel uncomfortable.
“They talk a lot about being in the ‘wrong place’ — being an adolescent among toddlers, screaming and smelling diapers, and being a young adult among old people talking about pensions and the stock market,” Olsson says. “These patients rarely end up with someone from their own generation.”
Zachary, who in 2007 founded Stupid Cancer, an advocacy organization for AYAs, agrees. “The hospital really needs to care not just about your living, but your rehabilitation,” he says. “You have to be treated like a 26-year-old, not a 96-year-old.”
But as Torres found, things have begun to change. The renovated Fort Worth wing is one of several in the nation either already operating or in the planning stages. Also, a number of large cancer centers have initiated support programs for AYAs.
In the Washington area, Children’s National Health System has a “navigator” for adolescents and a “teen room” for AYA inpatients. MD Anderson Cancer Center in Houston offers counseling and other support, along with fertility-preservation options. (Sterility can be a permanent side effect of some cancer treatments.)
The idea for the Fort Worth wing“was to make it a friendly place, not just for the patients but for their families and peers, and encourage socialization, ” says architect Evelyn Reyers, an architect with HKS and lead designer of the unit. “This helps the patients feel normal,” and it makes a big difference when friends who might otherwise be put off by standard hospital rooms come to visit.
But “it’s not just the physical space that’s pretty,” says Karen Albritton, an oncologist and medical director of the Fort Worth Adolescent and Young Adult Oncology Coalition. “These patients now have trained people they can talk to” about their emotional problems. The facility runs a support group and offers classes in cooking and yoga. “Sometimes a patient may not be ready for a support group but will come to a class and meet a few others who will say, ‘You should come to the support group.’ It’s a way in,” Albritton says.
In addition to growing attention to emotional needs, there are signs that progress in research and treatment is beginning to pick up. The NCI has established an AYA working group to focus on the special needs of these patients. In June, the Food and Drug Administration issued draft guidance urging drug manufacturers to make a greater effort to include adolescents and young adults in oncology studies.
Because of their age, adolescents traditionally haven’t been allowed in adult oncology trials (they are physiologically different from adults, and parental consentis required to test experimental drugs in children), while pediatric trials typically don’t start until after a drug has been approved for adults, which can take years.
Relaxing these barriers will get AYAs into studies faster and speed their access to new drugs, according to NCI. “We are lowering the age range for certain types of cancer studies,” says Nita Seibel, who heads NCI’s pediatric solid tumor therapeutics division. “This whole environment is changing quite a bit.”
She points out that scientists have learned that certain cancers in this age group differ at the molecular level from those of other ages, opening new avenues of research. For example, young adults with acute lymphoblastic leukemia don’t respond well to standard adult therapy because of these differences and do better on high-intensity pediatric drug regimens, she says. “You really have to look at the specific types of cancer and whether there are distinguishing features in a specific cancer when it occurs in certain age groups,” she says.
Many advocates, Zachary among them, want research efforts to accelerate and other special services to extend beyond large medical centers where most are found now. But, recalling his own experiences more than two decades ago, he is encouraged. He points out that when he went through his cancer experience, the Internet didn’t exist. Now, among other things, patients can find support groups there too.
“What I went through — the depression, the anxiety and stress — still exist,” he says. “But now, the community [of support] is there. Life is better.”