WebMD wasn’t a research option when Ivy Brown was diagnosed with Hodgkin’s lymphoma in 1974, so her mother looked up her 12-year-old daughter’s condition the old-fashioned way, in a hardcover medical volume.
“It just said ‘fatal,’” Brown explained. Having moved the family to London a month earlier, Brown’s parents were still trying to liaise with her pediatrician in the U.S. “My father told me recently that he was sleeping with the phone on his stomach because of the time change,” she said.
“They were as scared as you can be when you have a child who you think you might lose,” Brown explained. “It was devastating for them.”
Robin Glassman was also 12 when she was diagnosed with Hodgkin’s in 1972. Her mother wouldn’t let her read the disease’s description.
While the prognosis for Hodgkin’s, an immune system cancer, is excellent – it’s considered one of the most curable cancers, with 10-year survival rates of about 80 percent — that wasn’t the case fifty years ago. In the 1960s, only 1 in 10 Hodgkin’s patients were expected to survive for five years.
Today, the two women are among the first generation of what’s referred to as “long-term childhood cancer survivors” — kids who were diagnosed in the 1970s and lived for at least five years after their initial diagnosis, a benchmark that their peers born just 10 years earlier would not have likely lived to reach.
The women’s scars are shown here in powerful photos that capture both the fragility and the resilience of surviving cancer. (The photos may not be appropriate for viewing while at work.)
When President Barack Obama announced the $1 billion moonshot initiative in February, he appointed Vice President Joe Biden, whose 46-year-old son Beau died of brain cancer last year, to be the project’s steward.
“Right now, only 5 percent of cancer patients in the U.S. end up in a clinical trial,” Biden wrote in Medium in January. “The science, data, and research results are trapped in silos, preventing faster progress and greater reach to patients. It’s not just about developing game-changing treatments — it’s about delivering them to those who need them.”
Wednesday’s National Cancer Moonshot Summit, which harkens back to Richard Nixon’s 1971 “war on cancer,” is a national day of action led by Biden to crowdsource strategies for accelerating cancer-curing research from more than 350 scientists, oncologists, data and tech experts, patients, families and advocates across the country.
While the summit is a first step toward the moonshot’s expressed goal of doubling the current rate of progress toward a cure for cancer, there has been noticeably little discussion among politicians, advocacy groups and other stakeholders of what curing cancer actually means.
A spokeswoman for Biden said that the summit incorporated a discussion on survivorship, but declined to comment on the record about specific ways the moonshot would address the issue.
Critics called the initiative oversimplified, and emphasized that because cancer is many diseases, not just one, it’s unrealistic to push for a single cure. Others pushed back on the initiative’s meager budget.
“Let’s be honest,” Ezekiel Emanuel, oncologist and chair of the University of Pennsylvania’s Department of Medical Ethics and Health Policy, told STAT. “There’s not that much money in the moonshot. I just don’t think it is going to have that big an impact.”
Later in January, the vice president added, “I said I believe that we need an absolute national commitment to end cancer as we know,” he said. “I’m not naive, I didn’t think we could ‘end cancer.’ I’m not looking for a silver bullet. There is none.”
Survival is also more complicated than being cancer-free, a concern that’s rarely included in well-meaning, but oversimplified political initiatives and awareness months. Survivors’ stories, particularly those of childhood survivors who have had the longest tenure with cancer and its side effects, could help broaden the focus of the moonshot aims by highlighting their experiences of what life after cancer is like.
So what does defeating cancer actually look like? For Brown and Glassman, living cancer-free hasn’t meant a return to good health. The experiences of these women offer clues into life after childhood cancer, specifically the decades of late-onset effects from the treatments that saved patients’ lives in the first place.
The life-altering consequences of cancer don’t end with clean scans
There’s a commonly held misbelief that the story ends when kids with cancer are cured, Dr. Laura Hogan, a pediatric oncologist at Stony Brook University Hospital and a childhood cancer survivor herself, explained. “This is something that impacts the quality of their lives and their families’ lives, for a long time – sometimes lifelong.”
Cancer therapy can damage children’s developing organs, according to Dr. Kevin Oeffinger, who directs the cancer survivorship program at Memorial Sloan Kettering that Brown and Glassman are part of. “We are celebrating success of the cures, but also learning how to deal with the aftermath,” he said, listing heart disease, second cancers, lung problems, depression and anxiety as a few of the long-term consequences of cancer treatment.
Radiation therapy, in particular, is linked to countless aftermath effects. Chest radiation can mean heart disease or breast cancer later in life. Abdomen radiation is a precursor to colon or skin cancers. Brain radiation can manifest as memory or information-processing problems.
Radiation and chemotherapy can work together to treat cancer, and they can also combine forces to cause heart defects and other bodily damage. “Those can be immediate, or they can be decades down the road,” Hogan said. “Your risk of cardiac disease goes up over time.”
It’s literally a job to hold my head up throughout the day.
Ivy Brown, Hodgkin’s lymphoma survivor
Receiving radiation therapy as a child came with it’s own set of challenges. “Nobody said cancer to us,” Brown explained. “Nobody even said radiation. They just called it treatment. Everything was masked and they didn’t feel that it was necessary to tell a kid that.”
Both Brown and Glassman struggle with the day-to-day reminders of radiation they received decades ago, including muscle atrophy that fatigues their necks and backs, making it difficult to stand up straight.
“It’s literally a job to hold my head up throughout the day,” Brown said. “Sometimes I’ll see a picture of myself and I’ll be like, ‘Oh my god. I look like a human turtle. Come on, Ivy. Remember to hold your head up, throw your shoulders back.’”
Before Brown joined the Memorial group, she blamed herself for slouching. “I had no idea that there was a reason for it,” she said.
What we know about quality of life after cancer
It was a long time before doctors and scientists started to track those delayed effects in earnest — 1994 to be exact. The first long-term effort, a National Cancer Institute-funded initiative called the Childhood Cancer Survivor Study, surveyed more than 14,000 children who were diagnosed with cancer between 1970 and 1986.
One of the most recent studies using that data set was published in April. Researchers asked childhood survivors between the ages of 18 and 49 to assign a score between 0 and 1 to their personal well-being. (Zero represented death and 1 represented perfect health.) The results, which were adjusted for education, household income and health insurance, were disheartening, although not necessarily surprising.
On average, childhood cancer survivors rated their well-being at 0.77, compared to an average score of 0.81 among general population adults. Well-being responses among 18- to 29-year-old survivors were similar to general population 40- to 49-year-olds with no history of cancer, indicating a premature onset of age-related health problems for childhood cancer survivors.
There was, however, a glimmer of good news: Those without chronic problems, approximately 11 percent of the total group, reported similar well-being to people who’d never had cancer.
Ultimately, cancer survivors’ quality of life hinges on whether or not they suffer from chronic conditions, which of course, is both statistically probable and largely out of survivors’ control, a high-stakes roll of the dice in which they have little or no say.
Radiation is a cautionary tale that should temper our expectations for revolutionary treatments
Being a first-generation childhood cancer survivor is a peculiar position to be in. Ongoing research will help future survivors — researchers have already studied everything from smoking cessation to infertility — but for first-generation survivors like Brown and Glassman, it’s anyone’s guess what the long-term consequences of their childhood treatments will be.
That unfinished list of possible side effects looms large. “We know this stuff remains active in people’s bodies,” Brown said. “It’s not like the list ends.”
“I skated by for quite a while,” Brown said of her cancer treatments, which included surgery and radiation, but no chemotherapy. “It just did not even occur to me that I was going to have the kind of repercussions from the radiation that I ended up having.”
It’s complicated, according to Dr. Lisa Diller, a pediatric oncologist and director of the Dana-Farber Cancer Institute’s childhood cancer survivorship program.
You’ll get the same overall survival rates without radiation if you look 10 or 20 years out, said Diller, who co-authored the April survivorship study.
But treatment without radiation comes with a tradeoff. The big issue is weighing the advantages of survival with the likelihood that a child will relapse if he or she isn’t given the strongest possible treatment. If a child relapses, he or she will have to get more intense second-line therapies.
“Can you remove radiation from everyone and allow a certain percentage of patients to relapse, and then treat them more intensely?” Diller asked. “Or do you use as little radiation as possible, to the smallest volume, at the smallest dose, and maintain a larger overall likelihood of relapse?”
Brown’s breast cancer diagnosis in 2005 was the first sign of serious backlash from her treatment. Brown underwent a double mastectomy. A few years later, her aortic valve failed, and she had open-heart, valve-replacement surgery.
For Glassman, who was treated with both radiation and chemotherapy, the situation was even worse. She had a cancer reoccurrence within a year of her initial Hodgkin’s diagnosis. “Once I lost my hair, in my eyes, I was invisible,” she said. “I was like I don’t want to be seen.”
Years of cancer treatments also took a toll on Glassman’s psyche. She developed an eating disorder after prednisone, a cancer-treatment steroid she was on, made her swell up and gain weight. She turned to alcohol, cocaine and Quaaludes in her 20s, which put her treatment schedule at risk.
“I even wrote it in my journal: They’re worried because if my weight is too low, they won’t give me chemo,” Glassman said. “I mean I wrote this in my journal and I’m like … I don’t know.”
She overcame her doubt, though, and worked with a nurse practitioner to address her eating disorder.
“I didn’t want to harm my body in that way anymore. I was done,” she said.
The physical effects of Glassman’s treatments cropped up in her 30s, when unknown viral infection led to heart problems that necessitated having a pacemaker put in. Then she was diagnosed with breast and basel-cell skin cancers.
Looking back, Glassman wishes her doctors had placed more emphasis on maintaining her quality of life after treatment. “The main thing is to keep you alive,” she said. “Why would one want to be alive if you’re not living as fully?”
I’ve been really weak, really struggling.
Robin Glassman, Hodgkin’s lymphoma survivor
Both women have thyroid problems, a common affliction among Hodgkin’s patients, and became infertile due to their cancer treatment.
For Brown, not being able to have children has been one of the hardest parts of having cancer. “That is a scar that I will never really get over,” she said. “I tried to adopt, but kept getting sick and got turned down. That is one thing that has kind of left a different sort of emotional scar for me.”
Brown and Glassman, both New York City artists, connected through Memorial’s survivorship group a few years ago, after a nurse practitioner there suggested that they would get along.
But listening to other group members talk about their health was frightening. It foreshadowed the problems Brown could develop in the future, many of which had never previously crossed her mind.
“There were a lot of people there who were saying things like ‘I’m just waiting for the next shoe to drop,’” Brown said. “The first time I walked out of there, I got off the subway and I started crying.”
For Glassman, the last few months (after these photos were taken) have been especially taxing. She’s had heart problems and fluid in her lungs, and has been cycling in and out of the hospital and ICU.
“I’ve been really weak, really struggling,” she said. “It’s been a hard six months.”
What Joe Biden can learn from first-generation cancer survivors
Naturally, doctors and patients approach cancer treatment differently. “The first thing you worry about is not side effects,” said Dr. Vincent DeVita Jr., an oncologist and former head of the National Cancer Institute, who pioneered a Hodgkin’s treatment called MOPP — a combination of four chemotherapy medicines — in the late 1960s.
DeVita, whose memoir The Death of Cancer, was published in November, emphasized that he preferred to get a good crack at treating his patients’ cancer the first time around, ideally before the cancer has a chance to spread. “The side effects you worry about are the acute side effects,” he said.
“If you don’t treat the disease, you die of the disease in a relatively short period of time,” DeVita explained. “If you add too many therapies in, you increase the risk, but still, risks never overcome the benefits of treating a disease that’s otherwise fatal.”
Again, a complicated cost-benefit analysis, and a good reminder that the narratives we use to describe medical research and disease treatment, frequently distilled into odysseys for silver bullet solutions, are too simplistic.
Biden has directly addressed these critiques, but he hasn’t changed the objective of his moonshot campaign. It remains a quest to end cancer, when it might be more fruitful as a combination of cancer prevention initiatives and increased long-term support for survivors like Brown and Glassman.
For her part, Diller says she’s thankful for the sacrifices of survivors like Glassman and Brown, whose experiences paved the way for children with cancer today.
“They contributed to the changes we’ve made in the 90s and the aughts to change therapy,” she said. “The next generation of survivors in their 40s hopefully don’t have the same problems.”
In the meantime, with no consensus on what “cured” means beyond crude five-year and 10-year survival benchmarks, a reasonable objective for Biden’s cancer moonshot would be acknowledging that oncology is nuanced. Ending cancer relies on a binary assumption: You have cancer or you are cancer-free. Unfortunately it’s not that simple.
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