This article is the first of a two-part series on college students with cancer. This story focuses on the challenges young adult cancer patients deal with getting diagnosed, as well as the day-to-day struggles of balancing treatment and college.
Hanna Detwiler does not remember much about the first time she was diagnosed with acute lymphoblastic leukemia. She was only 3 years old.
She remembers every detail of her second diagnosis.
In March 2017, Detwiler, now 21 years old and a fourth-year in English, was diagnosed for the second time in her young life with leukemia.
Leukemia, a cancer of the blood and bone marrow that affects the body’s white blood cells, is the most common cancer in children. But having the same diagnosis 17 years apart is “a bit of a medical mystery,” Detwiler said.
It started a few months after she returned to Ohio State for Spring Semester her junior year. Working as a resident adviser, Detwiler became ill with what she thought was the flu. Weeks went by and she couldn’t seem to shake it. She thought it might be bronchitis, but medicine didn’t seem to help.
While on spring break, Detwiler noticed a strange rash. At first, she summed it up to razor burn, but soon it was over her whole body. On March 21, 2017, Detwiler went to Wilce Student Health Services to have it examined. They ran some tests and let her go home.
Almost as soon as she left, though, her doctors called her back. They told her she needed to go to the emergency room to get blood work immediately. Detwiler asked if it was cancer –– it had been a lingering thought for a while now –– but her doctors couldn’t confirm anything without blood results. With her mom en route from Detroit and her boyfriend, Jake Vasilj, already by her side, Detwiler was admitted to The James Cancer Hospital that night.
Detwiler said her doctors aren’t entirely certain if the cancer she had as a young adult was the same cancer she had as a child, reappearing many years later, or if it was a brand new diagnosis. Whatever the case, she entered what is currently one of the most underrepresented and misunderstood facets of cancer care –– adolescent and young adult cancer.
“Not taken seriously.”
Detwiler is one of almost 70,000 adolescents and young adults, aged 15 to 39, diagnosed with cancer each year in the U.S., according to the National Cancer Institute. That number nearly matches the entire population of students enrolled at Ohio State this academic year.
Young adults are more likely to be diagnosed with certain cancers such as leukemia, lymphoma, melanoma, testicular cancer, thyroid cancer and sarcoma compared to children or older adults. Together, these individuals account for about 8 percent of cancer diagnoses in the U.S. each year.
Among adolescents and young adults, cancer is the leading cause of disease-related death, according to the Centers for Disease Control and Prevention. This population has seen no significant change in patient survival rates since the 1990s.
Experts point to a number of reasons this particular age group has been left behind in the cancer care system since the beginning of the War on Cancer, an effort started during President Richard Nixon’s administration that worked to expand cancer research and improve early detection of the disease.
Every cancer patient has a horror story, but the young adult patient has all of them. —Kate Houghton, president and CEO of Critical Mass, an advocacy group for adolescent and young adult cancer patients.
One indication that young adult patients have been left behind is their stagnant survival rates, especially compared with pediatric and older adult patients. The overall prognosis for children and adults with cancer has greatly improved over the last 50 years. Young adult survival rates, however, have not kept up.
According to the National Cancer Institute, more than 50 percent of children diagnosed with cancer before age 20 in 1975 survived at least 5 years. By 2013, 83 percent of pediatric cancer patients, aged 0 to 14, survived at least 5 years. Adults saw similar progress, with five-year survival rates jumping from 50 percent in 1975 to 68 percent in 2007, according to the National Cancer Institute.
Adolescents and young adults, however, have seen little to no improvement over that time, sitting at an 83 percent survival rate since the 1990s.
While those numbers have remained consistent, experts say the lack of improvement stems from misconceptions about diagnosing adolescents and young adults –– namely the misconception that young people don’t get cancer.
It takes approximately 75 days for a young adult cancer patient to receive a diagnosis, said Kate Houghton, president and CEO of Critical Mass, an advocacy group for adolescent and young adult cancer patients. On average, it takes adult patients about a week, according to the American Society of Clinical Oncology.
“We’re not taken seriously,” said Houghton, who was diagnosed with acute myeloid leukemia when she was 27 years old and has been cancer-free for five years. “We’re practically an invisible population.”
Houghton said getting a diagnosis is just the beginning of a laundry list of barriers young adult cancer patients face: a lack of research and available clinical trials, spotty medical coverage, confusing treatment protocols, all on top of learning to be an independent young adult.
“Every cancer patient has a horror story, but the young adult patient has all of them,” she said.
“Straddling the line”
While home last summer, Detwiler had her weekly chemotherapy treatment at Detroit’s Henry Ford Hospital. In the infusion room, she would sit with other patients for a few hours a day, each with an IV dripping life-saving medication into his or her veins.
When she was a toddler getting treatment at a children’s hospital, Detwiler was surrounded by kids her own age. But as a 20-year-old, she said she was the youngest in the room by at least a decade.
“I was always the youngest person there,” she said. “I don’t fit into the normal leukemia box. There’s a lot of work done with adults and with children, but not as much in between.”
One problem felt by many adolescent and young adult cancer patients is a lack of a medical “home” in the cancer care system. With plenty of designated hospitals and protocols for treating older adults and young children, these young adults frequently find themselves in settings not fit to meet their needs.
Young adult patients are often treated in children’s hospitals on a pediatric treatment protocol based solely on their age when what they really need is an adult treatment plan, Houghton said.
“You can have more in common with the patient’s parents and the nurses than the 2-year-old patient in the bed next to you,” she said.
This is in part because of how the terms “adolescent” and “young adult” are characterized by doctors.
The National Cancer Institute considers adolescents and young adult patients to be anyone between the ages of 15-39. Bhavana Bhatnagar, a hematologist at The James, said each hospital could consider an adolescent or young adult differently. At The James, young adult patients are considered to be anyone 18 to 39 years old.
“These patients are straddling the line between adulthood and childhood,” Bhatnagar said.
Even though these patients all constitute the same age group, Bhatnagar said there is a breadth of life stages this age range includes, and each patient can be dealing with any number of different challenges. This includes everything from one’s high school years all the way through childbearing age.
“A lot of them are struggling, especially college folks, with school, jobs, a lot of cases just got their independence and left home,” Bhatnagar said. “As you get older, a lot of those struggles become, ‘How do I manage a job, a family, navigating finances?’ It’s a very kind of funny life stage.”
Houghton said the challenge with adolescence and young adulthood is that it is “a time of all firsts” –– first kiss, first car, first job, first taste of being on their own.
“When we talk about life happening, life happens in this age range,” she said. “There’s a lot of instability in this age range.”
Another facet of this problem is what is known as “the AYA (adolescent and young adult) gap” –– referring to a relative lack of research specific to these cancer patients
Houghton said depending on when someone is diagnosed with cancer, the disease looks different under a microscope. For example, how leukemia looks in a 10-year-old is biologically different than when it is diagnosed in a 25-year-old.
“Both the younger and older patients have seen a more rapid increase in outcomes in part because there’s more available research,” said Maryam Lustberg, an oncologist at The James.
Because of this research gap, Houghton said doctors are stuck splitting these patients between pediatric and adult protocols, unable to give young adults more specialized treatment for their age.
“Chemo is hard and college is hard”
When her hair first started falling out in The James’ intensive care unit, Detwiler threw a shaving party in the bathroom with her mom and friends. Slowly, they shaved away her long blonde hair –– first to shoulder length, then a bob, finally a pixie cut before going full-on bald.
“Every cut looked cute on her no matter what it was,” her mom, Jean, said.
Detwiler went bald before coming back to Ohio State in September 2017, after completing three rounds of chemotherapy. She loved being bald –– showers were a breeze.
Her doctors didn’t fight her desire to go back to school, but they encouraged her to take it easy.
“I had one doctor tell me, ‘You know, chemo is hard and college is hard,’” Detwiler said.
A self-described overachiever and perfectionist, Detwiler thought she was capable of balancing school and treatment. However, it wasn’t long before the balance act became nearly impossible.
Detwiler would end most days fatigued, not even wanting to cook for herself after walking the three flights of stairs to her off-campus apartment. Thinking about smaller tasks like laundry and getting to class, on top of beginning a fourth cycle of intense chemotherapy, became huge stressors.
While walking to class on one particularly warm day in the fall, Detwiler became dizzy and passed out in the Psychology Building. After calling Vasilj to take her to the hospital, she realized even the independence she had to walk had been taken away.
She had registered with Ohio State’s Student Life Disability Services, but even with their help getting class notes and communicating with her professors, Detwiler said she felt guilty for missing lectures.
Right before fall break, Detwiler went to the ER with a fever. She was ultimately admitted for three days with a neutropenia –– a side effect of chemo treatment that lowers the body’s white blood cell count and makes a person susceptible to infections. Pumped full of antibiotics, she said doctors essentially created a new immune system in her. After that, Detwiler said she hit a breaking point.
“I just thought, ‘I shouldn’t be doing this. I should just go home,’” she said.
After talking with her friends, Detwiler said she realized she needed to adjust her expectations she set for herself.
“It took a lot to find the balance and accept that I’m just not the same kind of student I used to be,” Detwiler said. “I have to worry about my health more than usual. My biggest concern is my cancer.”
She missed the freedom of making her own schedule but knew calling paratransit to get to class would save time and energy. She would go out with friends on the weekend, but only on the condition that she might need to go home early if she suddenly became tired.
One of Detwiler’s greatest sources of support continues to be Vasilj, her boyfriend of more than two years and an Ohio State alumnus.
Cancer was never something Vasilj expected to experience in his life, especially not with the woman he loves. Even on the eve of her diagnosis, as he was reassuring Detwiler it probably wasn’t cancer, he was preaching to himself as much as he was to her.
The two dated for about a year and a half before Detwiler was diagnosed. In the hours following the confirmation that, yes, it was cancer, Vasilj remembers feeling “nothing and everything” all at once.
“It was like the world had fallen apart,” he said.
Detwiler said adding cancer into the mix quickly changed their college love story to an adult relationship. She said she wouldn’t have blamed him for breaking up with her after she was diagnosed. Standing beside someone who is fighting cancer is not for the faint of heart.
Initially, Vasilj said it was emotionally difficult to switch from boyfriend to caregiver.
“I wasn’t prepared, but I was ready to play that role,” he said. “There was never any question in my mind that I would be there for her.”
Vasilj would go straight from class to The James to spend time with Detwiler. He would dress up, pack his projector and the two would watch movies for date night in the hospital.
Both former members of Ohio State College Democrats, Vasilj and Detwiler worked for Hillary Clinton’s 2016 presidential campaign. Vasilj reached out to a Clinton aide to see if the former candidate and Secretary of State would write Detwiler a note of encouragement when her treatment started. A couple months later, a note from Clinton arrived to Detwiler. She cried tears of joy.
Despite the difficulties they face, Vasilj said cancer has made them stronger and more grateful for what they have.
“What gets me going so often through the day is that I am inspired by this person that I am with because she is fighting through, she is getting amazing grades, she’s going to school when a lot of people don’t,” Vasilj said. “Hanna is a fighter and she is someone I am so proud of.”
A new normal
It’s been three months since Detwiler finished her fourth and final round of chemotherapy. For the next two years, she’ll receive maintenance chemo, a treatment designed to make sure her cancer doesn’t come back again.
With a pixie cut of blonde hair, Detwiler is learning what her new normal looks like.
Originally set to graduate this spring, she decided to take it easy and graduate over the summer. It was a hard decision for Detwiler to push off graduation, but it’s been something with which she has made peace.
Detwiler still has fears about her future. There’s a chance the aggressive chemotherapy she received will affect her fertility. She wonders, “Is it gone? I don’t know.”
She thinks about what kind of career she’ll pursue. A political junkie, she thought of joining a campaign for a long time, but maintenance chemo would make that nearly impossible.
Whatever she does, Detwiler wants people to be more aware of the struggles that adolescent and young adult cancer patients deal with. She wants hospitals to create programming specialized for this age group. She wants young people to ask questions and fight for better health care.
A lot has changed in the year since Detwiler was diagnosed. The life she planned for herself turned upside down by a disease she cannot control.
But to Detwiler, that’s all right. She beat cancer twice in her young life –– a notable feat she hopes no one else her age has to accomplish. Detwiler said she’s more balanced and at peace, in spite of it all.
“This is just my life,” she said, “and that’s OK.”