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Rebecca Blumenfeld always planned on getting married and starting a family. She just didn't expect she would need to do both so suddenly.
In the fall of 2011, Blumenfeld was newly engaged and attending graduate school just outside Boston. When a small bump on her leg rapidly grew in size, a succession of doctor visits ended with surgery to remove a tumor and, then, a diagnosis of a rare form of osteosarcoma — bone cancer.
Suddenly, at age 29, Blumenfeld felt like the life she'd mapped out was contracting quickly. Instead of graduate school and wedding plans, she was faced with a second, more invasive surgery and a year of chemotherapy. She and her fiancé, Jeff, immediately obtained a marriage license, found a justice of the peace, and spent their first week as husband and wife undergoing in vitro fertilization and harvesting embryos in case Blumenfeld's treatment caused fertility problems.
Then, in the second week of married life, came chemo.
Young adult patients have long been cancer's forgotten group. Children, despite making up just 2 percent of all cancer cases, get a disproportionate share of research funding, clinical focus, and media attention. Middle-aged and older patients are the primary beneficiaries of clinical trials, research protocols, and support groups.
For those caught in between, things can be confusing. Too old for the pediatric clinic and its playroom, too young to feel comfortable in an adult clinic alongside people their parents' age, young adults facing cancer often feel isolated.
Just about 10 percent of outpatients at Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC) are between ages 18 and 35. Peers don't understand what they are going through, and sometimes their own families are not sure how to help. Major milestones, such as going to college or beginning a career or family, are often disrupted.
DF/BWCC's Young Adult Program is designed to help these patients find their place and each other. It offers individual and group counseling, educational events, and peer support through face-to-face meetings and a secure website with online forums and information.
"Young adults can be taken off track by cancer, and it's hard for them to transition back into regular life, for practical and existential reasons," says Karen Fasciano, PsyD, a clinical psychologist and director of the Young Adult Program. "Their peer group hasn't experienced this, and their perspective on life and what they value may change."
Blumenfeld says she suppressed her emotions for the year she was in active treatment, only to have them come flooding back after her Port-A-Cath device was removed last December — exactly one year after her first chemotherapy infusion.
"During treatment, I was concretely connected with the physical — and my body and pain and nausea and discomfort — that I didn't have time to feel anything," says Blumenfeld, who was a "very part-time" student during this period. "Since treatment, I've been reflecting. I'm angry and frustrated that this was not the year it was supposed to be. I had to put off finishing school, my relationship was constantly challenged, and I don't feel like my body belongs to me anymore."
Blumenfeld credits the Young Adult Program with helping her through. After attending DF/BWCC's annual young adult conference, she was "amazed" to meet so many patients her age. She also met regularly with Fasciano, with whom she discussed her relationship with both her husband and her parents — on whom this fiercely independent woman had to become largely dependent.
Ben O'Clair faced several similar obstacles. He was a 21-year-old college senior taking final exams when he learned he had Ewing sarcoma — another form of bone cancer — and had to leave school immediately.
"I had just gotten to the point where I was preparing for graduation and interviewing for jobs and internships," recalls O'Clair, now 24. "I had to stop and put it all on hold."
Today O'Clair serves on the Young Adult Program advisory committee. "We're giving people a chance to get the support they need and connect with others are out there," he explains. "I'm working on the website; my favorite feature is a chat room where people can arrange to meet up with fellow patients."
Changes in how young adults are treated at DF/BWCC are not limited to their unique emotional concerns. There is an increased focus on the clinical and scientific differences that can arise in tumors found in this age population, and on tailoring treatments to best address them.
Stephen E. Sallan, MD, chief of staff emeritus and a pediatric oncologist at Dana-Farber/Children's Hospital Cancer Center, says there are several key obstacles in identifying and treating young adults.
"These are among the most uninsured and unemployed individuals in the country, so they are often not being seen regularly by a physician," says Sallan. "They feel they are immortal and can't get sick, so they may initially ignore their symptoms. Many times we don't get to them until they show up in an emergency room, with or without their parents."
Sallan says that it has long been known that some cancers – sarcomas, lymphomas, leukemias, some brain tumors, and some germ cell cancers — appear more often in young adults. Researchers recently found that a significant portion of these patients may respond best if given a chemo regimen designed for children.
Acute lymphoblastic leukemia (ALL), the most common childhood cancer, has a survival rate of 85 percent or higher when treated in patients age 15 and under. This rate was always worse in young adults until a pair of oncologists at the University of Chicago — Wendy Stock, MD, and Jim Nachman, MD — found that putting patients ages 18-30 on a pediatric chemotherapy protocol led to much better outcomes.
"When I first heard their talk, it awakened me," says Sallan. In 2000, along with three other cancer centers, Dana-Farber began treating young adult ALL patients with pediatric protocols. Survival rates went from 40 percent to 70 percent.
The key now, Sallan and others agree, is to increase the number of young adults on clinical trials for all cancers so that physician-scientists can learn more about what makes their tumors respond differently.
"We want to develop clinical trials geared to the physiological and biological needs of this group," says Suzanne George, MD, clinical director of the Center for Sarcoma and Bone Oncology at DF/BWCC. "If you look at sarcoma outcomes by age subtypes, which typically occur in the young adult population, patients over 18 typically do worse than younger patients, and yet are treated on the same protocol. There is an opportunity to better understand the disease biology."
Adds Sallan: "Diseases are sometimes identical regardless of age, and sometimes are not. We are learning the importance of recognizing these similarities and differences. Some of the difficult therapies and their side effects that can be tolerated by children occasionally prove to be too toxic for those in their 20s and 30s."
Katherine Helming has an innate understanding of this situation. At age 23, while a Harvard Medical School doctoral student training in a cancer biology lab at Dana-Farber, she was diagnosed with leukemia.
Like O'Clair, she had to take a full year off from her studies and, due to intensive chemotherapy treatments, spent many weeks of 2011 as an inpatient at Brigham and Women's Hospital or in isolation to prevent infection.
Nurses told Helming she had to "stop being a scientist worrying about what was going on with my cells, and start being a patient." Easier said than done, until she joined the Young Adult Program.
"The most important thing the program did was connect me with other young adults in my situation," Helming says. "If we didn't have the same type of cancer or weren't in the same treatment stage, we still had a lot in common — relating to our peers, becoming dependent again on our parents, and navigating the return to school or work."
Helming had a difficult time returning to her doctoral program during her second year of treatment. From the windows in Dana-Farber's Louis B. Mayer Research Laboratories, she could look across the street into the Yawkey Center for Cancer Care, where she was still receiving once-weekly chemotherapy.
"Sometimes that was too overwhelming to get my head around," Helming admits. "I got tired very easily and I didn't want to push myself too hard in the lab, but I still wanted to contribute."
Even after treatment, young adult patients like Helming face emotional challenges. They're often expected to bounce right back to their old lives.
"People will say to them, 'Aren't you lucky your cancer is gone?' at the same time they might really be struggling," says Ann LaCasce, MD, a hematologic oncologist and director of Dana-Farber/Partners CancerCare Hematology-Medical Oncology Fellowship Program. "They don't have the support they need, and every time something happens to them medically, they'll be certain their disease is back — even if it isn't."
Now these patients have that support. Whether or not their cancer returns, they are better equipped to deal with it from an emotional and physical standpoint. For Rebecca Blumenfeld, that means joking about her "real first year of marriage" as she prepares for a larger ceremony at a botanical garden in June.
Paths of Progress Spring/Summer 2013 Table of Contents