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Pamela Paul

It Takes a Lifetime to Survive Childhood Cancer

By Pamela Paul

Opinion Columnist

One night in 1981, in the middle of bath time, Marty Gonzalez noticed a strange glow that seemed to emanate from inside one of the eyes of her 9-month-old daughter, Marissa.

“It was really bizarre,” Gonzalez recalls. “It looked like a cat’s eye — like I could see all the way through.”

Though Marissa’s pediatrician in Long Beach, Calif., assured Gonzalez it was nothing, she sought another opinion.

While teaching her sixth-grade class, Gonzalez anxiously awaited news from her mother, who had taken Marissa to see a pediatric ophthalmologist. By lunchtime, with still no word from her mom, Gonzalez called the doctor directly. “I think it’s cancer,” the doctor told her.

Marissa, it turned out, had retinoblastoma, or Rb, a rare but aggressive cancer that almost exclusively affects children. Rb makes up only 3 percent of all pediatric cancer cases, which translates into about 300 children in the United States a year. Marissa had tumors in both eyes and needed immediate treatment: cryotherapy to freeze the malignancies and radiation to destroy them. Two days later, Marissa and her mother were on a flight across the country to see a specialist in retinoblastoma at Columbia University.

For Gonzalez, it all happened so fast. She was given no information on survival rates. She had no idea what would happen to Marissa’s vision if she lived. She didn’t know what the radiation, which would need to be administered every day for a month, might do to Marissa’s developing brain. She just wanted her daughter to live.

‘A Murderous Time’

Cancer is understood essentially as a disease of aging. Our body makes its own toxins, oxidants that damage our DNA. With every bite of food, every breath of air, each cell that divides, come tiny mutations that then accumulate. While most mutated cells are eliminated, at some point, a key cell continues to multiply uncontrollably and cancer develops. We essentially poison ourselves over time.

But childhood cancer, which often originates in utero, is fundamentally different in that it can progress before a child even begins to age. For most fetuses, the process of rapid growth doesn’t lead to cancer. But with all that cell division going on, occasionally there are mistakes. When those mistakes take place in certain cells, they’re like a ticking bomb hidden away in the fetus, often somewhere in the immune system. Those cells may stay hidden for years. Leukemia, the most common childhood cancer, manifests most frequently when children are about 3 or 4 years old and their immune system becomes more developed. But the originating cancer cell has been there all along.

For decades, a diagnosis of cancer in a child was a death sentence of the worst kind. Fewer than half of the children diagnosed in the 1960s were still alive five years later.

Too many children still die of cancer, which is the second leading cause of death in kids ages 1 to 14. But the treatment of pediatric cancer is also considered one of modern medicine’s success stories. Over 85 percent of children diagnosed with cancer survive. There are currently about 500,000 survivors of childhood cancer — approximately one in every 750 people — alive in America today. These statistics may give comfort to the parents of the roughly 15,000 children who face a cancer diagnosis each year.

But the progress masks tough realities. That 85 percent survival rate for cancer is measured at five years. For a 76-year-old woman diagnosed with breast cancer, five years can feel like a reprieve. But what does a five-year survival rate mean for a toddler? And what are the long-term effects of cancer treatment — which can include radiation, chemotherapy, surgery, amputation and reconstruction — on the developing body and mind?

Fending off early death is a victory. What the next four or five decades are like remains a challenge, for patients and families and for doctors. Childhood cancer is rare , and research into its treatment remains underfunded; only 4 percent of federal funding of cancer research goes to pediatric oncology. Surviving cancer can affect a child’s entire developmental trajectory — physically and psychologically. There’s risk for hormone dysregulation and infertility, uneven limb length and lost muscle mass, hearing loss and brain damage.

A boy treated with radiation to the pelvis might retain a child-size pelvis and penis even as a grown man. A girl might have normal development in one breast and nothing in the other. Dr. Christopher Recklitis, the director of research and support services at the Perini Family Survivors’ Center at the Dana-Faber Cancer Institute in Boston, said some young women are surprised to be told at age 25 to “check their ovarian function because they may only have a few more years of fertility left. And they’re like ‘ What are you talking about?’”

Clearly, a five-year goal post isn’t enough. Success in pediatric cancer must be rethought not as a short-term cure but as a lifelong recovery. “Our goal should be the next 10, 20, 30, 40 years,” said Dr. Douglas Hawkins, a professor of pediatrics at the University of Washington and chair of the Children’s Oncology Group, a coalition that unites the work of over 10,000 experts.

It’s taken decades to get to that challenge.

In 1956, Dr. David Nathan, president emeritus of the Dana-Farber Cancer Institute, began his oncology career at the National Cancer Institute. He administered chemotherapy to some of the earliest pediatric patients to receive the treatment. In the first test group, Nathan treated 50 children without a single survivor. It was, Nathan recalls, “a murderous time.”

“We made the kids so sick that most of the kids died from the therapy,” Nathan told me. “They died of infection, they died of bleeding, they fell apart.”

For Nathan, it was extremely difficult to cope. By his own admission, he lacked what he described as the “will” necessary to handle the trauma. “It took a certain personality that I just didn’t have,” he told me. He would go home and say to his wife, “I just killed another kid.” He went into adult hematology for 10 years to escape. “I didn’t want to have anything to do with it,” he said.

In the early days of chemotherapy, knowing just how toxic chemotherapy agents were, doctors hesitated to treat patients with more than one agent simultaneously. How could you cause so much damage to a person who was already so sick? The answer was that you had to: If patients got only a single form of chemo, the cancer would mutate past it; only attacking the cancer with multiple agents at the same time prevented it from adapting. This multi-agent assault on the system is what causes people to suffer so palpably during treatment — the vomiting, the hair loss, the systemic illness we’ve come to recognize in cancer patients.

Dr. Sidney Farber, the famed pathologist and pioneer in childhood oncology, found it especially hard to give such harsh toxins to children, instead arguing that single agents be administered sequentially. Nathan and Farber, working in the field at the time, fought each other terribly over the best approach. Farber could not bear the idea of being responsible for killing children in an attempt to treat them. “I will never injure seven children to save three,” Nathan recalled Farber saying. “But right now you’re saving none,” Nathan replied. “He would look at me savagely,” Nathan said.

Once multi-agent chemotherapy was shown to work in children, the feat of keeping the child alive was in itself considered a success, no matter how intense or traumatizing the treatment. For a long time, the guiding principle was, the more you could do to save the child, the better. Anything for a cure.

Often this meant radiation in addition to chemotherapy. Any parent today knows that you should limit your child’s exposure to radiation. But in the early days of pediatric cancer treatment, radiation was often considered vital to survival. What this radiation did to a growing body and brain was unknown.

We now know what the toll of radiation can look like, which is one reason it’s used much less often. Dr. Lisa Diller, the director of the David B. Perini Jr. Quality of Life Clinic for Childhood Cancer Survivors at Dana-Farber, recalled that when she was a young doctor in the late 1980s, she saw a child who had been treated for leukemia at age 2. “She had three separate secondary tumors, two different cancers as well as skin cancer, all from the radiation. I had this feeling of, ‘What the heck? What did we do here? Did we cure this child?’”

But while certain cancers, notably neuroblastomas, which develop in nerve cells, remain stubbornly difficult to treat, it’s hard to deny the efficacy of these more aggressive protocols in curing children of their primary cancer. In the early 1960s, for example, 5 percent to 10 percent of children with acute lymphoblastic leukemia were successfully treated. Today, that figure is around 90 percent. Over time, doctors refined their protocols. When a number of leukemia patients later developed brain injury, doctors cut back on radiation in areas that could reach the developing brain.

Marissa Gonzalez began treatment in 1982, when radiation was still commonly used to treat retinoblastoma. Initially, each time her eyes were radiated, she had to be carried onto a table and forcibly immobilized so that the radiation could precisely target the tumors growing inside her eyes. By the end of the month, Marissa was so accustomed to it, she was climbing onto the table herself.

But a month’s worth of treatment failed to stop the more aggressive tumor growing in Marissa’s left eye. This meant the worst-case scenario: Her eye would need to be removed. Afterward, a pathologist would determine whether cancer had reached the optic nerve, threatening the brain; the family would have to wait several weeks for the results.

“I remember just wailing,” Gonzalez said. It was a month before Marissa’s second birthday.

Unfortunately, treatment didn’t end with the removal of her left eye. Marissa’s earliest memory is of sitting in a hospital waiting room, her eyes dilated, filled with dread. She was around 4 years old, waiting for yet another procedure; she vomited from anxiety before and afterward.

From an early age, Marissa taught herself not to cry because she could see that it upset her mother. When she blew out the candles on her seventh birthday, “I wished for no more tumors,” Marissa told me. “How sad is that?”

On the bright side, Marissa’s vision remained pretty decent, roughly 20/40 in her remaining eye. Because her left eye was removed at such an early age, her brain was malleable enough to compensate. Despite wearing a prosthetic eye, she learned to ride a bike and, inspired by Nancy Kerrigan at the 1992 Olympics, took up competitive ice skating. For the next seven years, she woke up at 5 a.m. every day for practice. Out on the rink, vision and cancer never came up. “Ice skating was a sanctuary — nobody teased me because my eye and face looked different,” she said.

But as she got older, the bones in her face near her temples, where radiation had beamed its rays, stopped growing along with the rest of her face. Her eyelid drooped over the prosthetic eye. By middle school, she said, she was often called One-Eyed Willie. It wasn’t until she switched schools in high school that she made a group of close friends. At 17, Marissa enrolled at the University of Southern California, where she majored in communications, hoping to become a journalist.

Retinoblastoma is “like a microcosm of cancer treatment over the last 150 years,” said Dr. Michael Dyer, chair of developmental neurobiology at St. Jude. In 1809, doctors realized this kind of tumor was starting in the eye. Shortly thereafter, the first surgeries were attempted, well before the development of anesthesia and the earliest attempts at radiation in 1903. In the 1950s, a derivative of mustard gas from World War II was used as one of the first chemotherapeutic agents to treat eye cancer, as it had been for other cancers, in children.

In 1971, a cancer geneticist named Alfred Knudson proposed that people with retinoblastoma carried a mutation in a gene that suppressed tumors. The existence of these tumor-suppressor genes was a new concept, and it transformed the field of cancer genetics. In 1986, when researchers were able to identify the precise gene in question, it became the first tumor-suppressor gene to be identified.

Retinoblastoma also shows us what the future of cancer treatment may look like. Today, survivors can have their children tested for the gene, and scientists can screen for the 30 percent to 40 percent of kids who are likely to get it because they carry the mutation from their parents. Doctors could identify it early enough to treat it with laser therapy. Of course, telling parents their newborn has a 90 percent chance of developing an eye tumor is complicated.

To avoid the side effects of systemic chemotherapy, chemo can now be injected into the femoral artery in the leg through a long tube that goes directly into the vessels of the eye. Other new techniques involve injecting the drugs into the tissue surrounding the eye or directly into the eye. At St. Jude, doctors are trying to save at least some vision in patients with the most aggressive forms of Rb. In their most recent trial, 23 out of 25 children ended up with 20/70 vision in at least one eye. But these new treatments are extremely challenging. A few tumor cells can break off and become vitreous seeds, which float around and are difficult to target.

“The major challenge is you just don’t know what the consequences later on will be,” Dyer said. “Is this going to cause vision loss or other problems in 45 years? It just isn’t known.”

‘They Look Like 50- and 60-Year-Olds’

Doctors are trying to fill in that knowledge gap, not just for Rb but for all childhood cancers. Beginning in the early 1980s, once more childhood cancer patients were surviving past five years, researchers began focusing on the psychosocial impact of childhood cancer survival.

Initially, survivors of pediatric cancer may feel invincible. They are thrilled to be healthy again. But often, as they hit adolescence, they become newly vulnerable. A number of studies show that though most survivors do quite well, as a group they have higher levels of anxiety and depression and suicidal ideation. The school years can be especially tough on cancer survivors, many of whom look markedly different from their peers — shorter, weaker, occasionally slower. They often have prostheses or bear visible marks of their illness.

As one patient told his doctor, “I’m 24, but I’m five feet tall and I look like I’m 14.” Another said he didn’t bother dating women because “They will want a baby and I can’t have a baby.” Some are hit with a version of survivor’s guilt, comparable to making it out of a war zone: Why me? Why did I survive and so many of my peers on the cancer ward didn’t? What did I put my parents through? How must my sisters and brothers feel about the sacrifices they had to make?

But Recklitis, at Dana-Farber, also points to their tremendous resilience. “These are people who have had to work through huge challenges and find meaning in it,” he told me.

From the earliest days, specialists in pediatric oncology made a concerted effort to track their patients’ physical health over time and to work collaboratively. Because the patient population is relatively small — only 1 percent of cancer patients are children — and there are 16 major types of pediatric cancer, it’s difficult for any one research center to have enough data to make conclusions meaningful. But because the stakes are so high, a spirit of shared mission imbues the field.

Funded by the National Cancer Institute since 1994, the Childhood Cancer Survivor Study is the world’s largest resource for survivorship research. The C.C.S.S. has been tracking a cohort of 25,735 survivors diagnosed and treated between 1970 and 1999 across 31 member institutions. Those patients are showing the world what survival looks like over the long term. “What we’ve learned from them has absolutely changed how we treat new cohorts of children,” said Dr. Greg Armstrong, the principal investigator of the C.C.S.S. and the chair of the department of epidemiology and cancer control at St. Jude.

Since its inception, data from the C.C.S.S. has helped doctors fine-tune treatment. Children who had been initially treated at early ages with radiation suffered from cognitive impairment and I.Q. loss that became more pronounced as they aged. Their executive function was compromised; they found it harder to live independently and achieve employment goals. They were growth-hormone deficient, leading to decreased growth. Many were obese for reasons doctors couldn’t determine. Worst of all, the radiation caused secondary cancers; many would ultimately die of brain tumors.

It also became apparent that chemotherapy had certain delayed side effects. A common class of chemotherapeutic agents, anthracyclines, ultimately led to heart disease and heart failure. “I had 50 years of experience with this drug for leukemias and solid tumors,” said Dr. Stephen Sallan, a pediatric hematologist and oncologist at Dana-Farber. “But each dose kills some heart muscle cells. It’s inconsequential at the time, but with children, by the time they’re 35 or 45, some are going into heart failure. It’s horrible.” Among patients diagnosed in the 1970s and 1980s who passed the five-year survival mark, for example, 18 percent died of various complications in the 25 years that followed.

As the research on the physical and social effects of treatment accumulated in the 1980s and 1990s, doctors realized they were over-treating some cancers at the expense of the child with the cancer. They largely eliminated whole-brain radiation. Whenever possible, they avoided the administration of anthracyclines. They also found that a new heart-protectant drug, dexrazoxane spared the heart muscle when prescribed with anthracyclines. They started to view treatment not just as curing the cancer that was present but as preventing more problems down the road.

Coping with late-onset issues is a challenge not only for patients but also for doctors. Five or 10 years ago doctors begin to notice that when some patients hit their 30s and 40s, they looked 20 to 30 years older than they should, Dr. Kevin Krull, who studies the brain and cognitive development of pediatric cancer survivors at St. Jude, told me. Their skin and hair looked older. Their heart and lung function was that of an older person. They seemed to be aging more quickly . “We wondered, what is going on here?” Krull said. “These people were having health complications we’d expect in a 70-year-old when they’re only 40.” The medical community is now encountering survivors in their 50s and 60s for the very first time. No one knows what old age will look like for them.

Untangling these myriad factors is challenging because it’s not simply a straight line from radiation to accelerated aging. Late-onset health problems may have to do with epigenetic changes in the DNA or with physical consequences that alter behavior — leg weakness that leads to less exercise that leads to lowered cardiovascular function, for example.

Longitudinal studies like the C.C.S.S. and the St. Jude Lifetime Cohort, as well as survivorship programs, can help doctors distill those sequences of events. They also help doctors alter treatment or modify post-treatment care in order to minimize their adverse long-term effects. And they may also help isolate genetic predispositions to certain late-life complications, enabling doctors to work preemptively to lower those risks.

Sometimes it’s these late-life complications that have the greatest impact on survivors.

By the time Marissa enrolled at U.S.C. in 1998, a radiation-induced cataract, which had begun to develop when she was 9, got so bad she could no longer see the blackboard. By junior year, she had to have it removed. Though it was a simple procedure, Marissa was terrified. After all, she had only one eye left. But the surgery went smoothly, and her vision improved to 20/25. She thought her future was clear.

Over the course of 12 years, she’d had a series of reconstructive surgeries to improve her appearance. Stem cells and fat were transplanted into the concave areas along the sides of her face, making her look almost normal. She felt better than she ever had. She got a hugely rewarding job at U.S.C., her alma mater, working in special events.

But in 2018, one of the reconstructive surgeries went devastatingly wrong. Shortly afterward, still loopy from anesthesia, Marissa noticed floaters in her field of vision. Two days later, she went for a slow walk around the block with her mother, puzzling over what felt like nighttime descending.

“It was like someone had turned the lights out,” Marissa recalled. Returning to the hospital, she had what felt like an endless series of tests: MRIs, CT scans, a spinal tap. She’d suffered an optic nerve stroke. After over 100 hours in a hyperbaric oxygen tank and strong steroids, she asked a doctor, “How can I get back the vision I had?” and the doctor told her she would never get it back. Marissa sank to the floor and vomited. She now had one eye with 20/800 vision. She was 37 years old, and she was blind.

‘It’s Going to Take an Army’

How might a doctor modify a patient’s medical treatment as the person ages in order to decrease some of the known risks of long-term cancer survival ?

“Curing isn’t enough anymore,” said Armstrong, the principal investigator for the Childhood Cancer Survivor Study. “Now we have to dial back, not dial up.” This can be a tough sell to parents, particularly when it involves protocols that are still experimental. Imagine, Armstrong said, sitting down with a family and saying, “We’re going to beat this, but we want you to enroll in a study where you’re not going to use the strongest therapy.” Few parents may want to take that risk when they are laser focused on saving their child’s life. Yet decades later, data proves the payoff for children with certain cancers: More survivors from the 1990s have a longer life span because they received less treatment.

Some parents are calling for this change too — or at least for better ways to navigate treatment decision-making. A group of parents wrote a 2022 paper in the journal Pediatric Blood and Cancer essentially asking if, given the suffering, medicine has gone too far in aggressively fighting neuroblastoma, one of the most lethal cancers. Often, this involves multiple bone marrow or what are also called hematopoietic stem cell transplants, which are extremely tough — even on adults — and fraught with risks, including life-threatening infection. The arduous process of putting a child through such a painful and dangerous treatment is considered by many parents to be “an emotional nadir” in their child’s illness. Parents want to do anything they can to save their child; then they get a glimpse at what “anything” actually involves, especially when the chances of survival remain piteously low.

“To transplant or not to transplant is an enduring question in neuroblastoma parent forums,” the authors wrote. “Nothing instills more fear, turmoil, and regret” than the high-dose chemotherapy that comes with a stem cell transplant.

One study found that among 145 neuroblastoma survivors who underwent stem cell transplants, there was a 19-fold increase in mortality compared with the general population and a catalog of adverse effects, including at least one severe health event in over 70 percent of survivors. Parent forums teem with “a mixture of reassuring accounts and horror stories, the prevailing sense being that it is a roll of the dice,” the authors wrote.

Current research is focusing on identifying genetic markers that will help pediatric oncologists anticipate which patients might be especially susceptible to serious health complications later on in order to better determine the initial course of treatment. It will also identify high-risk patients who may need more frequent echocardiograms as a preventive measure. Dr. Smita Bhatia, director of the Institute for Cancer Outcomes and Survivorship at the School of Medicine at the University of Alabama at Birmingham, is trying to develop risk-prediction tools to help make that determination. “This is like a million-piece puzzle,” she said. “I don’t know if we will get there in my lifetime.”

As it turns out, a lifetime is precisely the right unit of time to use when studying cancer survival. The expected life span of childhood cancer survivors treated before 2000 is at least 10 years shorter and perhaps 20 years shorter than average, and that isn’t good enough, Bhatia said: “We want to make sure our survivors live as long and as healthy a life as someone who has never had cancer.”

When you treat a child for cancer, Nathan of Dana-Farber said, you’re going to need doctors and social workers and others who are prepared to help that child for life: “You can’t just treat them and say, ‘Go take care of yourself.’ It’s going to take an army.”

In an ideal world, a survivor’s general practitioner would continue follow-up care. A specialist could employ cognitive behavioral techniques to help with cognitive impairment. Efforts could include preventive care against hypertension and diabetes.

“After 10 years, you would think you’re out of the woods, but that’s not the case,” said Dr. Nicholas Phillips, a cancer-survivorship physician at St. Jude.

Many survivors of childhood cancer move on from their oncology team to their pediatrician or general practitioner once they’ve passed the five-year survival mark. Many of those doctors aren’t as well versed in the long-term physical and emotional consequences of pediatric cancer treatment.

The patients “get lost,” Phillips said. They miss out on potential screenings, preventive medicine, early warning signs. Oncologists hope their survivorship studies can help inform the wider medical community.

In interviews with oncologists around the country, the subject of the C.C.S.S.’s future came up repeatedly. A number of new methods for treating childhood cancer have been introduced since the last patients enrolled were diagnosed in 1999, and doctors have made significant improvements in survival rates for more types of cancer in the short term. But this is a new cohort of patients; we don’t know how these protocols will affect children treated in 20 or 30 years’ time. Patients, parents and doctors need updated data that reflect the long-term prospects of those patients who are being treated today, not just those who were treated 24 years ago.

The issue is money, which comes from the National Institutes of Health and its National Cancer Institute. There is currently no funding to track a new cohort of patients treated after the year 2000. The C.C.S.S. also needs money to continue tracking and studying the initial cohorts. Those patients, like the rest of the American population, are now entering old age; it’s incumbent upon all of us to know what to expect and how best to support them.

Beginning in the 1970s, Western medicine went through a phase of reimagining its specialty-dominated approach to illness toward a more holistic one — thinking big in the moment of crisis. In subsequent decades, we’ve also moved toward being more thoughtful about preventive medicine — thinking big about how to avoid the crisis to begin with. The next big shift should be a greater emphasis on recovery over the long term — what we do after the initial crisis passes.

Large-scale survivorship studies could also expand into other childhood diseases, as well into areas of adult medicine. The highly collaborative and long-term approach to the field of pediatric oncology could be a model. And we could think even bigger. Given that we now have electronic data records, we could have a national registry that tracks all diseases, not just pediatric cancer, or even cancer, but all medical issues over the course of a lifetime.

For now and for many survivors, there isn’t always a road map. Marissa Gonzalez knew she could expect visual challenges over time. But blindness was unimaginable. How was she going to run high-profile events for U.S.C.? How was she going to read? What if her roommate moved a chair or left a book on the floor where Marissa wasn’t expecting it and she tripped? She felt like she was stumbling around her own life, and it filled her with rage. She took a nine-month leave from work and started drinking heavily. “I was trying to be drunk so I didn’t have to face reality,” she told me, years of therapy later.

When her mother suggested Marissa sell her car, Marissa was outraged. Though she couldn’t drive, it symbolized yet another loss of freedom. Hearing the car pull out of the driveway for the last time, Marissa dissolved into tears.

Eventually, Marissa pulled herself back together. She stopped drinking away her pain. She started using adaptive technology for her phone and computer, signed up for Audible, mastered the walking stick. U.S.C. offered her a new job, and she threw herself into volunteering with World Eye Cancer Hope, a community organization for retinoblastoma survivors and their families. Because she is part of a survivorship program at U.S.C., her health is carefully monitored. With a 17 percent chance of developing breast cancer, she makes sure to get an annual mammogram. She sees a dermatologist twice a year; even a case of melanoma, which Marissa knew she was at high risk of developing, this past summer didn’t slow her down.

In a 2022 essay celebrating her 30th anniversary of being cancer free, an occasion she used to fund-raise for Rb survivors, Marissa wrote, “I find it both overwhelming and encouraging to look back on the life that retinoblastoma set forth for me. I have no idea what my life would look like had I not been a baby with cancer.” Given her druthers, she would have been born without cancer, she went on, but that was never an option. “That is why I choose instead to focus on what I can control, and what I can do with a cancer-filled life.”

The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips . And here’s our email: [email protected] .

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An earlier version of this article misstated when Dr. Lisa Diller saw a pediatric leukemia patient at the Dana-Farber Cancer Institute. It was in the late 1980s, not the early 1980s. The article also misspelled the surname of a physician at the institute. He is Dr. Stephen Sallan, not Sallen.

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Pamela Paul became an Opinion columnist for The Times in 2022. She was the editor of The New York Times Book Review for nine years and is the author of eight books, including “100 Things We’ve Lost to the Internet.”

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Thursday, March 7, 2024

For childhood cancer survivors, inherited genetic factors influence risk of cancers later in life

NIH-led study sheds light on the causes of new cancers among childhood cancer survivors and could have implications for their screening and follow-up.

Common inherited genetic factors that predict cancer risk in the general population may also predict elevated risk of new cancers among childhood cancer survivors, according to a study led by researchers at the National Cancer Institute (NCI), part of the National Institutes of Health. The findings, published in Nature Medicine, provide additional evidence that genetics may play an important role in the development of subsequent cancers in survivors of childhood cancer and suggest that common inherited variants could potentially inform screening and long-term follow-up of those at greatest risk.

Childhood cancer survivors are known to have a higher risk of developing a new cancer later in life due to adverse effects of cancer treatment or rare inherited genetic factors. In the new study, the researchers evaluated the combined effect of common variants with history of radiation treatment and found the resulting elevated cancer risk was greater than the sum of the individual associations for treatment and genetic factors alone.

“Knowledge about a person’s genetic makeup could potentially be useful in managing their risk of subsequent cancers,” said lead investigator Todd M. Gibson, Ph.D., of NCI’s Division of Cancer Epidemiology and Genetics. “The hope would be that, in the future, we can incorporate genetics along with treatment exposures and other risk factors to provide a more complete picture of a survivor’s risk of subsequent cancers to help guide their long-term follow-up care.”

To assess the contribution of common inherited genetic variants to risk of subsequent cancer in people who survived childhood cancer, the research team used data from genome-wide association studies, or GWAS, that had been conducted in large populations of healthy individuals. Such studies have identified thousands of common inherited variants associated with risk of different cancers. The risk associated with a single common variant is typically small, but the effects of large numbers of variants can be bundled into a summary score, or polygenic risk score , that provides a more comprehensive estimate of someone’s genetic risk.

Although polygenic risk scores have shown promise for predicting cancer risk in the general population, it has not been known whether such scores are also associated with the risk of subsequent cancer among childhood cancer survivors.

To find out, the researchers looked at the association between polygenic risk scores and risk of basal cell carcinoma, female breast cancer, thyroid cancer, squamous cell carcinoma, melanoma, and colorectal cancer among 11,220 childhood cancer survivors from two large cohort studies. For all of these cancers except colorectal cancer, polygenic risk scores derived from GWAS in the general population were associated with the risk of these same cancers among childhood cancer survivors.

The researchers then looked at basal cell carcinoma, breast cancer, and thyroid cancer — malignancies that occurred most often in the combined data set and that are strongly linked to radiation therapy — to examine the joint effect of polygenic risk score and treatment history. They found that risk associated with the combination of higher-dose radiation exposure and higher polygenic risk score was greater than would be expected based on simply adding the risk associations of each individual risk factor.

For basal cell carcinoma, a high polygenic risk score was associated with 2.7-fold increased risk compared with a low polygenic risk score among survivors. History of higher radiation exposure to the skin was associated with a 12-fold increase in risk, compared with lower radiation exposure to the skin. However, survivors with high polygenic risk scores and higher doses of radiation to the skin had an 18.3-fold increased risk of basal cell carcinoma, compared with those with low polygenic risk scores who had received lower radiation doses to the skin.

Moreover, by age 50, survivors with higher polygenic risk scores and higher radiation exposure had a greater cumulative incidence of basal cell carcinoma, breast cancer, or thyroid cancer than those with lower polygenic risk scores or lower radiation exposure. For example, among female survivors who had radiation to the chest, 33.9% of those with a high polygenic risk score had been diagnosed with breast cancer by age 50, compared with 21.4% of those with a low polygenic risk score.

One limitation of the study is that the populations included in the analysis were predominantly of European ancestry, so additional studies are needed in diverse populations. Furthermore, polygenic risk scores are not yet used routinely in the clinic, although they may one day inform screening approaches or other clinical decisions.

“Although these results suggest that polygenic risk scores could play a role in improving guidelines for long-term follow-up of childhood cancer survivors exposed to radiation, right now they are not sufficient on their own to alter existing guidelines,” Dr. Gibson noted.

About the National Cancer Institute (NCI): NCI leads the National Cancer Program and NIH’s efforts to dramatically reduce the prevalence of cancer and improve the lives of people with cancer. NCI supports a wide range of cancer research and training extramurally through grants and contracts. NCI’s intramural research program conducts innovative, transdisciplinary basic, translational, clinical, and epidemiological research on the causes of cancer, avenues for prevention, risk prediction, early detection, and treatment, including research at the NIH Clinical Center—the world’s largest research hospital. Learn more about the intramural research done in NCI’s Division of Cancer Epidemiology and Genetics. For more information about cancer, please visit the NCI website at cancer.gov or call NCI’s contact center at 1-800-4-CANCER (1-800-422-6237).

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov .

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Childhood Cancer and Functional Impacts Across the Care Continuum (2021)

Chapter: 9 overall conclusions, 9 overall conclusions 1.

This chapter presents seven overall conclusions derived by the committee from evidence presented throughout the report. The first section provides narrative summaries of evidence supporting these overall conclusions. Chapters 2 through 8 of the report each end with a set of chapter-specific findings and conclusions based on the evidence presented in that chapter. The second section of this chapter includes a selection of those chapter-specific findings and conclusions that support each of the committee’s overall conclusions.

OVERALL CONCLUSIONS

Functional impacts of cancer and its treatment.

Cancers occurring under the age of 18 years represent a highly heterogeneous group of malignancies with unique biologic and genetic features, as well as age-, sex- and race-specific incidence rates. The past four decades have seen a modest yet continuous increase in the incidence of cancers occurring under the age of 15 years both in the United States and internationally. Since the late 1960s, the survival rate in children diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. Nevertheless, there remains a group of primary and recurrent cancers for which modern intensive, multimodal therapy is not curative.

___________________

1 This chapter does not include references. Citations to support the text and conclusions herein are provided in previous chapters of the report.

Although more than 85 percent of children diagnosed with cancer will now survive for more than 5 years after diagnosis, survival rates vary greatly depending on the cancer type and stage. The prognosis is particularly good for standard acute lymphoblastic leukemia; lymphomas; low-grade gliomas; and a subset of low-stage, chemo-sensitive solid tumors. Although progress has been made in the treatment of acute myeloid leukemia and neuroblastoma, survival remains unacceptably low. New therapies are urgently needed for diffuse midline glioma and several advanced sarcomas of bone and soft tissue, for which there has been minimal, if any, impact on long-term disease-free survival.

Although the improvements in survival are encouraging, they have come at the cost of survivors experiencing acute, chronic, and late adverse effects of the disease and its treatment. Treatment of childhood cancers generally includes the individual or combined use of surgery, radiation, chemotherapy, and other therapies. Because cancers often present with symptoms and signs resulting from the anatomic or physiologic impact of the cancer itself, one of the primary goals of initial cancer treatment is to reduce this impact and subsequently alleviate the severity of these impairments, which may affect function. While improvements are often seen with cancer treatment and rehabilitation interventions, full functional recovery may not be achieved. Long-term functional deficits come from a combination of the permanent destructive effects of the cancer itself and the detrimental effects of its treatment, and long-term follow-up of survivors of childhood cancer has yielded greater recognition and understanding of these chronic and late effects. Age at treatment contributes in a unique way to the risk and severity of long-term adverse effects experienced by survivors of childhood cancer.

Chronic health problems related to the toxicity of cancer treatment are common among survivors, increase in prevalence with time since diagnosis, and encompass a spectrum of biomedical and psychosocial disorders and associated functional limitations. Data on historical cohorts of survivors of childhood cancer show that the occurrence and severity of multiple chronic health conditions are substantially greater relative to individuals without a history of cancer. As a result, survivors are predisposed to greater hospital-related morbidity and premature mortality compared with age- and sex-matched controls. In addition, cancer treatment can result in cognitive deficits and have negative psychosocial impacts on children and their families that create negative outcomes with respect to functioning and overall well-being.

For these reasons, the committee drew the following overall conclusion:

• During recent decades, the incidence of childhood cancers has increased at a modest rate, and the survival rates for many cancer types have improved. The result has been a growing number of
• Despite improved overall survival, certain specific cancers, including certain hematologic malignancies with adverse genetic features, some central nervous system (CNS) and solid tumors with metastatic disease, or tumors that recur after primary therapy, have distinctively poor prognoses.
• The functional, social, and psychosocial impacts of all childhood cancers on both the affected children and their families are significant, beginning at the time of diagnosis, continuing through treatment, and often lasting into survivorship.
• The interruption of normal childhood during critical developmental stages by the diagnosis and treatment of a childhood cancer can be particularly debilitating and result in long-term adverse effects.
• Although many survivors of childhood cancer experience persistent adverse physical, cognitive, and psychosocial effects from the cancer and its treatment, CNS tumors and some leukemias place survivors at especially high risk for cognitive deficits, and solid tumors are often associated with physical impairments and medical complications.

Adverse Effects of Treatment

Despite the success of multimodal therapy, the acute toxicities of radiation, chemotherapy, and stem cell transplantation remain high. The multimodal treatment of many cancers—utilizing combinations of surgical intervention, chemotherapy, and radiation therapy, as well as immunotherapies, including chimeric antigen receptor (CAR) T cell therapy, hematopoietic stem cell transplantation, and targeted therapies—is likely to expose children with cancer diagnoses to multiple treatment-related complications and late effects. As a result, a large proportion of survivors of childhood cancer are at significantly increased risk of experiencing serious, potentially disabling, and life-threatening acute, chronic, and late adverse effects of cancer and its treatment. It is likely that overall functional impairment and disability result from not only one but often multiple exposures to different treatments that can have a variety of adverse physical, functional, cognitive, and psychosocial effects. For this reason, it is important for survivors of childhood cancer to receive lifelong surveillance and appropriate interventions for treatment-related physical, cognitive, psychological, and emotional toxicities and late effects.

Medical side effects of therapy are common and can impact every organ system. Cognitive dysfunction also is commonly observed in survivors of childhood cancer, particularly those with a history of CNS cancer or CNS-directed therapies, including radiation and chemotherapy. In addition, anxiety, depression, and posttraumatic stress occur in a significant subset of survivors, and all survivors are at risk for experiencing the effects of cancer and its treatment on psychosocial and emotional functioning. Psychological late effects also may develop well after the completion of treatment.

As noted, the age of the child at treatment is a critical factor, and other factors can be important as well. For example, the risk of secondary malignant neoplasms (SMN) is associated with exposure to various treatments, including radiotherapy and certain chemotherapy classes, but that risk can be modified by age at exposure and genetic predisposition. In addition, many of the long-term and late effects of radiation therapy, which often are permanent, depend not only on the age of the child at treatment but also on the location and volume treated and the dose of radiation administered. For example, irradiation to the brain of a young child significantly increases the risk of neurocognitive injury and the subsequent risk of disability. Also, the completeness of surgical removal of solid tumors is a critical factor in determining the length of chemotherapy and the need for and dose of radiation therapy, which in turn affect the number and severity of side effects and thus the risk of disability.

Although most targeted and immunotherapies are relatively early in their clinical development for pediatric cancer, they offer promise for decreasing the adverse effects of treatment. Immunotherapy as maintenance therapy has been a major breakthrough in the treatment of neuroblastoma, for example. However, supportive longitudinal data are just beginning to emerge, and in general, the survival benefits and long-term consequences of newer therapies remain unknown.

• Adverse physical, functional, cognitive, and psychosocial effects can occur regardless of treatment modality.
• Acute effects of treatment can elicit impairment both during the treatment course and during a period of recovery following its completion.
• The adverse effects of pediatric cancer therapy may also continue well past the end of treatment and can be cumulative and become more severe over time.
• It is important for survivors of childhood cancer to receive lifelong surveillance and appropriate interventions for treatment-related physical, cognitive, psychological, and emotional long-term and late effects.
• The severity of adverse effects can vary depending on cancer type; tumor location; presence of metastases; type of surgery received; treatment modality employed; duration of treatment; and such patient characteristics as age, genetics, and underlying preexisting conditions.
• Increasing understanding of the biology and pathogenesis of cancers is resulting in a growing number of targeted treatments that hold promise for less serious acute and long-term adverse effects.

Occurrence and Persistence of Functional Impairments

Adult survivors of pediatric cancer have a real and increasing risk of experiencing disabling conditions due to chronic and late effects and SMN resulting from the cancer and its treatment. Despite advances in treatment protocols and treatment modifications, physical complications, including neurologic, sensory (e.g., hearing), and musculoskeletal deficits, and late effects continue to occur and lead to functional impairment and restrictions on participation in school, organized sports, and work.

Cognitive sequelae, particularly among survivors of CNS tumors or other cancers involving CNS-directed treatment, may already be present at the time of diagnosis or begin at initiation of treatment, or later, but often persist and may progress in severity over time. Some may not be evident until a later developmental stage poses its functional demands. As a result, repeated screening and risk-based assessment of cognitive function over time is essential to characterize cognitive sequelae accurately in survivors of childhood cancer. Evaluation of IQ alone may underestimate the full neurocognitive sequelae experienced by survivors of childhood cancer. Survivors of cancers and treatments affecting the CNS most commonly experience deficits of attention, working memory, processing speed, executive functioning, and memory that have significant negative impacts on adaptive, educational, and vocational outcomes into adulthood, resulting in persistent functional impairment and reduced independence.

Certain subgroups of survivors (e.g., those heavily pretreated, undergoing bone marrow transplantation, having certain CNS tumor diagnoses) are most likely to experience the psychosocial and emotional functioning effects of cancer and its treatment, and may do so to a greater degree. Adolescent and young adult (AYA) survivors are at higher risk of anxiety, depression, and distress compared with same-age cohorts who have not experienced cancer. Although a slight majority of AYA survivors are able to realize educational

and vocational achievements similar to those of their peers, it may take them longer to do so or require academic or job modifications or support.

Although functional deficits resulting from cancer and its treatment can demonstrate improvement with intervention, long-term functional impairments are expected and may impact performance in the educational, vocational, social, self-care, and avocational arenas. For young survivors, an ongoing focus on shorter-term and intermediate effects of cancer treatment may promote the use of rehabilitative interventions that could have large positive effects on their overall quality of life. Yet, while rehabilitation strategies can improve a child’s level of independence and interaction with skills and activities, persistent measurable deficits will remain for the majority of neurologic and musculoskeletal late effects. These deficits almost uniformly cause impairments in mobility and independence in completion of activities of daily living, and many also cause impairments in communication and cognition skills. As demands for independence increase over time, moreover, deficits in adaptive functioning are likely to become more profound and noticeable across the survivor’s lifetime.

For these reasons, the committee drew the following overall conclusions:

• Cognitive sequelae, especially among children treated for CNS tumors and those who receive certain types of chemotherapy, may begin at the time of diagnosis or initiation of treatment, but often persist and may progress in severity over time. Specific cognitive deficits (e.g., a decrease in processing speed related to radiation treatment) may begin well after treatment has concluded or may become evident at a later developmental stage associated with differing functional demands.
• Long-term psychosocial effects are especially common among the following subgroups of children: those who undergo pretreatment prior to hematopoietic stem cell transplantation, those with CNS tumors, and those who experience significant physical late effects.
• Many survivors of childhood cancer do not achieve an age-equivalent degree of independence in one or more of several domains, which may include mobility; endurance; activities of daily living; and cognitive, social, or communicative skills.
• Although rehabilitation services may improve the level of independence with respect to functional activities among survivors of childhood cancers, survivors may never achieve the full level of educational and vocational participation expected for their age or developmental stage.

Transition from Adolescence to Adulthood

The transition from adolescence to adulthood at age 18 poses particular challenges for children and adolescents diagnosed with cancer in at least two realms: (1) review of continued eligibility for those receiving U.S. Social Security Administration (SSA) disability benefits, and (2) continuity of cancer care and follow-up.

With respect to the first realm, when children turn 18, SSA reviews their eligibility to continue receiving disability benefits using its disability determination process for adults. This review process, called the age-18 redetermination, includes evaluation under nonmedical eligibility rules. SSA’s disability determination process for adults differs from that for children. The process for children consists of three steps, and at Step 3 involves a determination as to whether the child’s qualifying impairment(s) meets or medically equals SSA’s Listing of Impairments (listings) for children, or functionally equals criteria in the listings. In making this determination, SSA considers the child’s functioning compared with that of same-age children who do not have impairments. In contrast, the adjudication process for adults is based on medical–vocational evaluations and consists of five steps. As with children, Step 3 of the process involves a determination as to whether the adult’s qualifying impairment(s) meets or medically equals criteria in SSA’s listings for adults. Although some of the listings contain functional criteria, SSA does not expressly consider whether the severity of an adult applicant’s impairment(s) “functionally equals” the listing as it does for children. Adult applicants whose impairments do not meet or medically equal criteria in the listings move to Steps 4 and 5 of the disability determination process. At these steps, SSA evaluates applicants’ residual functional capacity (RFC) and determines whether their physical or mental RFC allows them to perform past relevant work (Step 4) or, in conjunction with such vocational factors as age, education, and work experience, including transferable skills, to perform other work in the national economy (Step 5). Adolescents who are being reconsidered for SSA disability benefits when turning age 18 must navigate the transition between the child determination process that incorporates functional equivalence to peers and the adult process that focuses on medical–vocational evaluations.

In addition to the differing disability determination processes for children and adults, there are differences in the structure of the child and adult

listings for cancer—notably with respect to the level of specificity. The child cancer listings currently contain a category of “malignant solid tumors,” which appears to encompass any malignant solid tumors that are not otherwise specifically called out in the listings. In contrast, the adult cancer listings do not include a “malignant solid tumor” category, instead calling out many of those solid tumors individually (e.g., soft-tissue sarcoma; skeletal system sarcoma; carcinoma of the kidneys, adrenal glands, or ureters).

The second realm—continuity of cancer care and follow-up—encompasses both individuals who are first diagnosed with cancer during adolescence and survivors of cancers diagnosed earlier in childhood. The National Cancer Institute defines the AYA population as patients diagnosed with a first cancer at ages 15–39. As a group, AYAs experience poorer outcomes compared with younger children and older adults. Many reasons for this discrepancy have been identified, including delays in diagnosis, suboptimal access and accrual to clinical trials, differences between pediatric and adult treatment protocols (i.e., whether treatment is administered by pediatric or adult medical oncology providers), differences in psychosocial supports, variable compliance with prescribed treatments, and dose delays and modifications.

Regardless of age at diagnosis, it is clear that childhood cancer and its treatment often precipitate chronic and late effects that adversely impact health and functioning in adult survivors. Diagnosis of medical conditions resulting from cancer treatment in childhood may require blood tests, echo-cardiograms, electrocardiograms, or other measures. SMN, which are rare in the first 5 years after cancer diagnosis, can cause significant morbidity and mortality in long-term survivors. Strategies for determining which survivors are at high risk and implementing surveillance for SMN have been established to improve morbidity and mortality through earlier identification of SMN, although few such strategies are implemented in survivors 18 years of age or younger. It is notable that the cognitive effects of cancer treatment not only often persist but also may progress in severity over time. As a result, survivors of childhood cancer require regular, ongoing, lifelong surveillance for physical, cognitive, psychological, and emotional treatment-related toxicities and late effects, some of which may not yet be recognized. However, complexities in the transition from pediatric to adult cancer care and follow-up may lead to disengagement in care, which in turn can result in more severe adverse outcomes in adult survivors of childhood cancer. While shifting from family to individual health insurance may contribute to the complexity of transitioning from pediatric to adult cancer care and follow-up, attrition at the point of transfer cannot be explained solely by issues of access, and special support is required to keep survivors engaged in the health care system into and through adulthood.

• The change in SSA’s disability determination process during the transition from adolescence to adulthood introduces challenges for determining disability and sustaining benefits across the 18-year-old threshold.
• Complexities in the transition from pediatric to adult cancer care and follow-up may lead to disengagement in care, which can result in more severe adverse outcomes in adult survivors of childhood cancers.
• Attrition at the point of transfer from pediatric to adult cancer care cannot be explained solely by issues of access. Special support is necessary to keep survivors of childhood cancers engaged in the health care system into and through adulthood.

Participation in Clinical Trials

Clinical trials that aim to improve survival and limit toxicity are essential to advance care and outcomes for patients with childhood cancer, and participation in such trials is considered the standard of care in pediatric oncology. Ideally, all children diagnosed with cancer should have the opportunity to enroll in a trial, which will ensure that they are receiving the most up-to-date treatments while also enabling the generation of new knowledge about how best to treat patients with particular types of cancer. With increased trial availability and continued study, for example, a decrease in side effects is anticipated from such advances as precision radiation therapy, including proton therapy. Likewise, targeted and immunotherapies offer promise for addressing cancers with unmet clinical need, but further studies are required to understand how novel targeted and immunotherapies can be incorporated into the treatment of both newly diagnosed patients and relapsed and refractory patients. Continuing research on tumor biology and genomics may reveal additional therapeutic targets and treatment options. Trials to test investigational therapies for children with high-grade CNS and metastatic or relapsed non-CNS malignant solid tumors are especially needed. Studies to understand late effects of novel therapies and intervention studies to mitigate late effects and SMN in hematologic malignancies are imperative because although cure rates are high in many cases, the burden of toxicities and late effects is significant.

• Clinical trials advance the standard of care for patients with childhood cancers and are critical to improving survival while also
• Regulatory agencies have implemented changes to enable early access to novel therapeutic agents and to facilitate the participation of adolescents and young adults and pediatric patients with cancer in clinical trials.
• It is important to increase the participation of adolescents and young adults in clinical trials, as their participation rate is typically much lower compared with younger children.
• Increased engagement of patients, especially those from underrepresented groups, and their advocates in the development of clinical trials is important to enable representation of the patient and family perspective, including quality of life, tolerability of side effects, and goals of treatment, in the trial design.

Availability of Pediatric Cancer Care Services and Providers

High-quality pediatric cancer care requires management by a multidisciplinary team of clinicians with expertise in pediatric cancer care. The approaches to pediatric and adult cancer care frequently differ. Relative to oncologists who treat adults, pediatric oncologists often utilize different criteria for cancer staging and risk stratification (e.g., for Hodgkin lymphoma) and different treatment protocols. Surgical removal of pediatric solid tumors is complex and should be done by pediatric surgical subspecialists at specialized centers. Certain types of procedures (e.g., treatment of pelvic bone tumors with surgical resection and cytoreductive surgery and hyperthermic intraperitoneal chemotherapy; treatment of neuroblastomas with vascular involvement using radiofrequency ablation and cryoablation) are available only at highly specialized centers (HSCs)—centers in which an interventional radiologist or surgeon has received specialized training beyond the standard training for that specialty. Similarly, precision radiotherapy techniques, including proton beam radiation, are increasingly available and used to mitigate late effects in patients with childhood cancer. Pediatric oncologic care therefore often requires treatment at an HSC. Accordingly, patients from less densely populated and rural areas may have to travel some distance to reach a treatment center that can provide the specialized pediatric cancer care they require. Specialized treatment centers are available in every state, but HSCs are rare. In states without an HSC, out-of-state consultation would be expected for treatments available only in HSCs.

• High-quality care for pediatric cancers relies on effective coordination among a highly specialized team across a broad range of disciplines.

SELECTED FINDINGS AND CONCLUSIONS IN SUPPORT OF THE COMMITTEE’S OVERALL CONCLUSIONS

Box 9-1 shows the links between the overall conclusions presented above and some of the most relevant chapter-specific findings and conclusions that support them. 2

2 Not all of the committee’s chapter-specific findings and conclusions are included in Box 9-1 . Those that are included are numbered according to the chapter in which they appear.

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Since the late 1960s, the survival rate in children and adolescents diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. Although the improvements in survival are encouraging, they have come at the cost of acute, chronic, and late adverse effects precipitated by the toxicities associated with the individual or combined use of different types of treatment (e.g., surgery, radiation, chemotherapy). In some cases, the impairments resulting from cancer and its treatment are severe enough to qualify a child for U.S. Social Security Administration disability benefits.

At the request of Social Security Administration, Childhood Cancer and Functional Impacts Across the Care Continuum provides current information and findings and conclusions regarding the diagnosis, treatment, and prognosis of selected childhood cancers, including different types of malignant solid tumors, and the effect of those cancers on children’s health and functional capacity, including the relative levels of functional limitation typically associated with the cancers and their treatment. This report also provides a summary of selected treatments currently being studied in clinical trials and identifies any limitations on the availability of these treatments, such as whether treatments are available only in certain geographic areas.

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Childhood Cancer: Introduction

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Cancer. Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.

Cancer is uncommon in children. Most cancers (99%) develop in adults, and it is most common in older adults. About 1 out of every 3 adults will develop cancer during their lifetime, while about 1 in 285 children will develop cancer before the age of 20.

At the same time, there is a lot of research going on to discover new treatments for childhood cancers. This research has greatly improved the overall survival rate for children with cancer, which is now more than 80%.

What is childhood cancer?

Cancer in children can occur anywhere in the body, including the blood and lymph node systems, brain and spinal cord (central nervous system, or CNS), kidneys, bones, and other organs and tissues.

Most of the time, there are no known causes for childhood cancers. Childhood cancers may behave very differently from adult cancers, even when they start in the same part of the body.

Cancer begins when healthy cells change and grow out of control. In most types of cancer, these cells form a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread to distant parts of the body. Malignant tumors also grow rapidly whereas benign tumors generally grow slowly.

In leukemia, a cancer of the blood that starts in the bone marrow, these abnormal cells very rarely form a solid tumor. Instead, these cells crowd out other types of cells in the bone marrow. This prevents the production of:

Normal red blood cells. Cells that carry oxygen to tissues.

White blood cells. Cells that fight infection.

Platelets. The part of the blood needed for clotting.

Types of childhood cancer

"Childhood cancer," also called pediatric cancer, is a general term used to describe a range of cancer types found in children. Below are the most common types of cancer diagnosed in children under age 15:

Leukemia (accounts for about 28% of childhood cancer cases)

Acute lymphoblastic leukemia (ALL)

Acute myeloid leukemia (AML)

Brain and spinal cord tumors  (27%), also called CNS tumors

Glial tumors

Astrocytoma

Oligodendroglioma

Choroid plexus carcinoma

Oligoastrocytoma

Glioblastoma

Mixed glial neuronal tumors

Ganglioglioma

Desmoplastic infantile ganglioglioma

Pleomorphioc xanthoastrocytoma

Anaplastic ganglioglioma

Neural tumors

Gangliocytoma

Neurocytoma

Embryonal tumors

Medulloblastoma

Medulloepithelioma

Ependymoblastoma

Atypical Teratoid/Rhabdoid tumor

Pineal tumors

Pineocytoma

Neuroblastoma  (6%), a tumor of immature nerve cells. The tumor often starts in the adrenal glands, which are located on top of the kidneys and are part of the body’s endocrine (hormonal) system.

Non-Hodgkin lymphoma (6%) and Hodgkin lymphoma (3%), cancers that begin in the lymph system

Wilms tumor (5%), a type of kidney tumor

Rhabdomyosarcoma (3%), a type of tumor that most commonly begins in the striated skeletal muscles. Non-rhabdomyosarcoma soft tissue sarcomas can also occur in other parts of the body.

Germ cell tumors (3%), rare tumors that begin in the testicles of boys or ovaries of girls. Rarely, these tumors can begin in other places in the body, including the brain.

Retinoblastoma (2%), a type of eye tumor

Osteosarcoma (2%) and Ewing sarcoma (1%), tumors that usually begin in or near the bone

Pleuropulmonary blastoma , a rare kind of lung cancer

Hepatoblastoma and hepatocellular carcinoma (1%), types of liver tumors

Cancer in teenagers and young adults

Research is increasing in children diagnosed with cancer after the age of 14. Since these children are starting to enter young adulthood, they may have unique medical, social, and emotional needs that are different from younger children with cancer. They are part of a group often called adolescents and young adults (AYA).

Teenagers and young adults with cancer should most often be treated at a pediatric oncology center. Ideally, they should be treated at a center where both medical oncologists, which are doctors who treat cancer in adults, and pediatric oncologists, which are doctors who treat cancer in children, work together to plan treatment. This collaboration will ensure that they receive the newest treatments and are cared for by a team of doctors familiar with these diseases. Collaboration is especially important for teenagers who have lymphoma, leukemia, or a bone tumor. Treatment by specialists familiar with these diseases has been shown to improve survival.

Within the AYA group, there are also patients who have types of cancer more commonly found in adults, such as melanoma , testicular cancer , or ovarian cancer . Teenagers with these cancers may receive treatments that are similar to adults, but they also need age-appropriate support for their social and emotional needs. Talk with your health care team about what support programs are available.

Below are the most common types of cancer in teenagers, ages 15 to 19:

Central nervous system (CNS) tumors (account for about 21% of cancer cases in teenagers)

Hodgkin lymphoma (12%)

Thyroid cancer (12%)

Germ cell tumors , including testicular cancer (8%) and ovarian cancer (2%)

Non-Hodgkin lymphoma (7%)

Soft tissue sarcoma (7%)

Acute lymphoblastic leukemia (ALL) (6%)

Bone tumors (5%), including osteosarcoma and Ewing sarcoma

Acute myeloid leukemia (AML) (4%)

Melanoma (3%)

Looking for More of an Introduction?

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Cancer.Net Patient Education Videos: The Moving Forward series, in collaboration with The Livestrong Foundation, provides perspectives from both doctors and survivors on topics often faced by teenagers and young adults living with cancer.

Find a Cancer Doctor. Search for a cancer specialist in your local area using this free database of doctors from the American Society of Clinical Oncology (ASCO).

Cancer Terms. Learn what medical phrases and terms used in cancer care and treatment mean.

The next section in this guide is Statistics . It helps explain the number of people under age 20 who are diagnosed with cancer and general survival rates. Use the menu to choose a different section to read in this guide.

Childhood Cancer Guide

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National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on Childhood Cancers and Disability; Aiuppa L, Cartaxo T, Spicer CM, et al., editors. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington (DC): National Academies Press (US); 2020 Dec 9.

Childhood Cancer and Functional Impacts Across the Care Continuum.

• Hardcopy Version at National Academies Press

2 Epidemiology of Childhood Cancer in the United States

When considering the epidemiology of cancer within defined populations and/or specific settings, it is important to understand the definitions of and distinctions among established metrics for characterizing cancer’s occurrence and outcomes. Box 2-1 defines the terms often used in describing the occurrence, outcomes, and risks of cancer and cancer-related outcomes.

Metrics Used in the Epidemiology of Cancer and/or Disease Outcomes.

Cancer therapy can potentially have adverse consequences. In this report and in the medical literature, the following terms are frequently used to denote the temporal occurrence of an event or condition representing the effect of cancer treatment on the health and function of the cancer patient:

• Acute effect of cancer therapy: an event or condition that occurs during or immediately following cancer treatment.
• Chronic effect of cancer therapy: an event or condition that was present during the time the survivor of cancer was receiving treatment and continues to be present in the posttreatment period.
• Late effect of cancer therapy: an event or condition that occurs at a time distant from completion of cancer therapy and was not present during the therapy or occurred acutely but resolved.

The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program represents the primary source for population-based data on cancer incidence in the United States ( Howlader et al., 2019 ). The SEER Program typically reports cancer incidence according to age-specific groupings consisting of 5-year intervals. For the present report, the committee used SEER data for the period 1990–2016 1 to calculate overall and diagnosis-specific (based on the International Classification of Childhood Cancer [ Steliarova-Foucher et al., 2017 ]) incidence rates for ages 0–17 (see Table 2-1 ). For all malignant diagnoses collectively, the annual incidence in this age group is 176 cases per million population, which translates to an estimated 13,060 newly diagnosed cases per year.

Annual Incidence Rates and Proportional Distribution of Cancer Diagnoses Among Those Aged 0–17 in the United States.

The age-specific distribution of the annual incidence rates for cancers diagnosed among those under age 18 is bimodal (U-shaped curve), with the highest age-specific incidence rate of 277.2 cases per million population occurring in the first year of life (see Figure 2-1A ). Overall, males have a modestly higher incidence (199.6/10 6 ) compared with females (186.6/10 6 ) (see Figure 2-1B ). The SEER Program reports incidence rates by race, defined by the categories White, Black, Other (American Indian/Alaska Native, Asian/ Pacific Islander), and ethnicity, defined by the categories Hispanic-Latino and Non-Hispanic-Latino. In the under 18 age group, incidence rates are highest among Whites (204.5/10 6 ), followed by Hispanics-Latinos (195.7/10 6 ), Asians/Pacific Islanders (156.4/10 6 ), Blacks (146.1/10 6 ), and American Indians/Alaska Natives (93.5/10 6 ) (see Figure 2-1C ).

FIGURES 2-1A–C

Age-specific annual incidence rates per million population of cancer diagnosed among those aged 0–17 years in the United States overall (panel A), by sex (panel B), and by White and Black race and Hispanic ethnicity (panel C). SOURCE: National (more...)

Over the past four decades, there has been a modest, yet continuous, increase in the incidence of cancers occurring under the age of 15 years in the United States (see Figure 2-2 ) and internationally ( Steliarova-Foucher et al., 2018 ). Reasons posited for this observed increase have included improvements in diagnosis and cancer registration, the ability to diagnose some tumors at an earlier age, and changes in possible underlying environmental risk factors.

Temporal trend in the annual incidence rate of cancer (per 100,000 population) in the United States among those diagnosed at ages 0–15. SOURCE: National Cancer Institute’s Surveillance, Epidemiology, and End Results Program for the period (more...)

• MORTALITY AND SURVIVAL

For individuals under 20 years of age in the United States, cancer is the second leading cause of death among females and the fourth among males. The leading causes of cancer-related death include brain and other nervous system, bone/joint, and soft-tissue cancers and leukemia ( Siegel et al., 2020 ). Cancer is the leading cause of death due to disease among children under age 18.

Since the late 1960s and early 1970s, the survival rate among children diagnosed with cancer has steadily improved, and there has been a corresponding decline in the cancer-specific death rate in this population ( Smith et al., 2014 ). Research using data from population-based cancer registries and cooperative group clinical trials has shown that survival rates differ among racial and ethnic groups ( Amirian, 2013 ; Henderson et al., 2011 ; Holmes et al., 2018 ; Jacobs et al., 2017 ; Kadan-Lottick et al., 2003 ; Kahn et al., 2019 ; Lupo and Spector, 2020 ). Non-Hispanic White children diagnosed with cancer often have the best survival rates compared to their peers from other racial and ethnic groups.

Survival rates for individuals diagnosed with cancer at ages 0–17 continue to improve (see Figure 2-3 ). The estimated proportion surviving 5 years from diagnosis increased from 77.8 percent to 82.7 percent to 85.4 percent for those diagnosed in the 1990s, 2000s, and 2010–2016, respectively. The proportion surviving at 5 years and 10 years varies considerably by specific cancer diagnosis (see Table 2-2 ).

Survival for individuals diagnosed with cancer at ages 0–17 in the United States, by year of diagnosis. SOURCE: National Cancer Institute’s Surveillance, Epidemiology, and End Results Program for the period 1990–2016.

5- and 10-Year Survival by Year of Diagnosis for Individuals Diagnosed with Cancer at Ages 0–17 in the United States.

• CANCER-SPECIFIC INFORMATION

Cancers that occur among those aged 0–17 reflect a heterogeneous group of diseases with unique biologic, genetic, and demographic features. Moreover, the classification and categorization of childhood cancers are continually evolving with the emergence of new knowledge relating to the molecular, pathologic, and prognostic characteristics of this diverse group of malignancies. Leukemias, lymphomas, and central nervous system cancers (CNS) combined account for 70 percent of cancer cases in this age range. Appendix B provides cancer-specific summaries, including population-based incidence and survival, for the major diagnoses occurring in childhood.

• ETIOLOGIC RISK FACTORS

One of the earliest reports linking risk for childhood cancer and genetic syndromes, published in 1957, describes a higher-than-expected number of diagnoses of acute leukemia among children with Down syndrome ( Krivit and Good, 1957 ). It has since become well recognized that a broad spectrum of genetic conditions is associated with specific cancer diagnoses among children ( Brodeur et al., 2017 ; Ripperger et al., 2017 ) (see Table 2-3 ). More recently, there is increasing evidence suggesting that birth defects, both those with and without a known genetic basis, are associated with an increased risk of cancer among children ( Lupo et al., 2019 ). With ongoing research and the application of advanced genomic technology, new genetic-based risks are continually being identified, providing additional insights into the importance of heritable predisposition in the etiology of cancer in this population, although it is important to note that the known genetic risks account for only a small proportion of the cancers occurring in those under age 18.

Examples of Syndromes and Cancer Predisposition Genes Associated with Cancers Diagnosed During Childhood.

In contrast to the impressive gains achieved in treatment, survival rates, and insights into the genetic/biologic characteristics of childhood cancers, progress in understanding the etiology of most cancers in this age group has been limited. Demographic characteristics are the etiologic risk factors most strongly and consistently associated with the incidence of specific cancer diagnoses among those under age 18. Examples of such risk factors include age, sex, and race/ethnicity:

• Early-onset tumors such as hepatoblastoma, retinoblastoma, Wilms tumor, and neuroblastoma have the highest incidence in the first years of life and occur only rarely after the age of 10.
• Late-onset tumors such as Hodgkin lymphoma, osteosarcoma, Ewing sarcoma, thyroid cancer, and melanoma generally have very low incidence during the first 5 years of life, subsequently rising with increasing age.
• Some cancers have a bimodal age distribution, such as the characteristic age peak of 3–6 years for childhood acute lymphoid leukemia and the U-shaped age distribution for germ cell tumors (GCTs).
• Some cancers, such as CNS malignancies, acute myeloid leukemia, and rhabdomyosarcoma, show only modest variation in age-specific incidence rates.
• With respect to the male/female ratio for the incidence of cancer in children, males have a higher incidence of acute lymphoid leukemia (1.2:1), Hodgkin lymphoma (1.2:1), non-Hodgkin lymphoma (2.0:1), medulloblastoma (1.4:1), hepatoblastoma (1.5:1), Ewing sarcoma (1.3:1), rhabdomyosarcoma (1.3:1), and GCT (1.3:1); females have a higher incidence of Wilms tumor (0.8:1), thyroid cancer (0.2:1), and malignant melanoma (0.8:1).
• Differences in the incidence of a number of childhood cancers among groups defined by race/ethnicity have generated hypotheses relating to genetic, socioeconomic, and culture-related etiologic factors. Examples of racial/ethnic differences in incidence include a twofold lower incidence of acute lymphoid leukemia among Blacks, the rare occurrence of Ewing sarcoma among Blacks, and a low incidence of neuroblastoma and CNS malignancies among Asians and Hispanics ( Chow et al., 2010 ).

The lack of progress in identifying etiologic risk factors for childhood cancers is not the result of a lack of research. Numerous large case-control epidemiologic investigations, many conducted in North America and Europe during the 1980s and 1990s, included thousands of childhood cancers within the most common diagnoses and incorporated what was then state-of-the-art clinical and biological characterization of cases along with environmental sampling to enhance exposure assessment. These large-scale epidemiologic studies, employing primarily case-control designs, found a variety of associations for factors related to the preconception and pregnancy periods (e.g., maternal smoking and alcohol or coffee consumption, prenatal vitamins, parental occupational exposures, residential chemical exposures); factors related to birth and delivery (e.g., parental age, birthweight, cesarean section birth, gestational age); and postnatal factors (e.g., breastfeeding; exposure to residential chemicals, passive smoke, and environmental or medical radiation) ( Lupo and Spector, 2020 ). Importantly, the associations for only a few of these nongenetic risk factors have been found to be reproducible in multiple populations or to exhibit dose-risk relationships. Given the modest yield of these studies, subsequent research has focused largely on utilizing molecular genetic-based methods in epidemiologic investigations or meta-analyses of data from previous epidemiologic studies.

• THERAPY-RELATED MORBIDITY

Over the past five decades, progress in cancer biology and therapeutics has resulted in steady improvement in outcomes for children with cancer. With access to contemporary therapy, 5-year survival rates for individuals diagnosed with cancer before age 20 exceed 80 percent, and survival into adulthood is anticipated for most ( Siegel et al., 2020 ). It has been estimated that at the end of 2013, the number of survivors of childhood cancer living in the United States surpassed 420,000 (representing approximately 1 of 750 members of the total U.S. population), and based on current incidence and survival rates, the number of survivors of childhood cancer was expected to reach 500,000 by 2020 ( Robison and Hudson, 2014 ).

The success reflected in this growing population of survivors of childhood cancer is offset, however, by the adverse health outcomes they experience related to cancer and its treatment. The cytotoxic agents and other modalities used to treat childhood cancers have been linked to risk for a variety of chronic health conditions that either develop early in the course of treatment and persist for the long term, or present as late effects many years after the completion of therapy. Cancer treatment–related toxicity is typically modality-specific and often dose-related, but additional factors related to the patient, the particular cancer, the health care system, and the cancer care provider influence an individual survivor’s health outcomes ( Dixon et al., 2018 ; Robison and Hudson, 2014 ).

Chronic health problems are common among survivors treated for cancer during childhood; they increase in prevalence with the passage of time since diagnosis; and they encompass a spectrum of biomedical and psychosocial disorders ( Armstrong et al., 2014 ; Bhakta et al., 2017 ; Gibson et al., 2018 ; Hudson et al., 2013 ). As described in detail in subsequent chapters of this report, there is remarkable diversity in the constellation of factors that can impact the risk profile as well as adversely impact the physical and mental/ emotional functioning of survivors. Nonetheless, based on the age of the survivor cohort, the time elapsed since diagnosis, and the method of health assessment (self-report versus medical evaluation), prevalence rates range from 60 percent to more than 90 percent for at least one chronic physical health problem and from 20 percent to more than 80 percent for severe, disabling, or life-threatening complications ( Armenian et al., 2010 ; Armstrong et al., 2014 , 2016 ; Bhakta et al., 2017 ; Geenen et al., 2007 ; Gibson et al., 2018 ; Hudson et al., 2013 ).

Importantly, chronic and late effects of cancer treatment clearly predispose survivors to greater hospital-related morbidity and premature mortality compared with age- and sex-matched controls ( Armstrong et al., 2016 ; Rebholz et al., 2011 ; Reulen et al., 2010 ; Richardson et al., 2015 ). Observational studies of late health effects among survivors of childhood cancer have been instrumental in identifying, quantifying, and characterizing cancer treatment–related physical and mental/emotional health risks. In so doing, findings from health outcomes research have provided a major impetus for change in pediatric cancer therapy and have informed health screening of survivors of childhood cancer.

To demonstrate the magnitude of physical health conditions experienced by survivors, the cumulative burden methodology ( Bhakta et al., 2017 ) was applied to data from a clinically assessed population at a single institution (St. Jude Children’s Research Hospital) ( Hudson et al., 2017 ). Figure 2-4 shows the level of serious, disabling, or life-threatening physical disease-related morbidity experienced by survivors of childhood cancer at 18 and 26 years of age—two time points of importance relative to accessing disability support and parental health care coverage, respectively.

Distribution of the cumulative burden of serious, disabling, and life-threatening chronic physical health conditions (severity grades 3 and 4 according to modification of the Common Terminology Criteria for Adverse Events [Hudson et al., 2017]) at 18 (more...)

• FINDINGS AND CONCLUSIONS

Over the past four decades, there has been a modest, yet continuous, increase in the incidence of cancers occurring under the age of 15 in the United States and internationally.

Since the late 1960s, the survival rate in children and adolescents diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. The 5-year survival rate for individuals under age 18 who were diagnosed with cancer between 2010 and 2016 is 85.4 percent.

The proportion of children and adolescents diagnosed with cancer who are surviving at 5 years and 10 years varies considerably by specific cancer diagnosis.

Cancers occurring under age 18 represent a highly heterogeneous group of malignancies with unique biologic and genetic features, as well as age-, sex-, and race-specific incidence rates.

Even with the improvements realized in survival, cancer remains the leading cause of death from disease among children and adolescents in the United States.

It is estimated that as of 2020, there are approximately 500,000 individuals in the United States who were diagnosed and treated for cancer during childhood.

Although some genetic syndromes are known to increase the risk of cancer before age 18, the etiology of the majority of cancers in this age range is largely unknown.

Chronic health problems related to the toxicity of cancer treatment are common among survivors of childhood cancer, increase in prevalence with the passage of time since diagnosis, and encompass a spectrum of biomedical and psychosocial disorders.

Based on historical cohorts of survivors of childhood/adolescent cancers, the cumulative burden of multiple chronic health conditions is substantially greater in this population than is observed in individuals without a history of cancer.

Chronic and late effects of cancer treatment clearly predispose survivors to greater and more severe morbidity and premature mortality compared with age- and sex-matched controls.

Conclusions

While cancers diagnosed among those under age 18 represent less than 1 percent of all cancers diagnosed in the United States, the high proportion of survivors among this population represents individuals at high risk of experiencing serious, disabling, and life-threatening acute, chronic, and late adverse effects of cancer and its therapy.

Adult survivors of childhood cancers have a real and increasing risk of experiencing disabling conditions as a result of chronic and late effects of the cancer and its treatment.

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Since the prepublication copy of the report was released, the date range was corrected from 2000–2016 to 1990–2016 to accurately reflect the date range for the data used in Table 2-1 .

• Cite this Page National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on Childhood Cancers and Disability; Aiuppa L, Cartaxo T, Spicer CM, et al., editors. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington (DC): National Academies Press (US); 2020 Dec 9. 2, Epidemiology of Childhood Cancer in the United States.
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March 7, 2024

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For childhood cancer survivors, inherited genetic factors influence risk of cancers later in life

by National Cancer Institute

Common inherited genetic factors that predict cancer risk in the general population may also predict elevated risk of new cancers among childhood cancer survivors, according to a study led by researchers at the National Cancer Institute (NCI).

The findings, published in Nature Medicine , provide additional evidence that genetics may play an important role in the development of subsequent cancers in survivors of childhood cancer and suggest that common inherited variants could potentially inform screening and long-term follow-up of those at greatest risk.

Childhood cancer survivors are known to have a higher risk of developing a new cancer later in life due to adverse effects of cancer treatment or rare inherited genetic factors . In the new study, the researchers evaluated the combined effect of common variants with history of radiation treatment and found the resulting elevated cancer risk was greater than the sum of the individual associations for treatment and genetic factors alone.

"Knowledge about a person's genetic makeup could potentially be useful in managing their risk of subsequent cancers," said lead investigator Todd M. Gibson, Ph.D., of NCI's Division of Cancer Epidemiology and Genetics. "The hope would be that in the future, we can incorporate genetics along with treatment exposures and other risk factors to provide a more complete picture of a survivor 's risk of subsequent cancers to help guide their long-term follow-up care."

To assess the contribution of common inherited genetic variants to risk of subsequent cancer in people who survived childhood cancer, the research team used data from genome-wide association studies , or GWAS, that had been conducted in large populations of healthy individuals. Such studies have identified thousands of common inherited variants associated with risk of different cancers. The risk associated with a single common variant is typically small, but the effects of large numbers of variants can be bundled into a summary score, or polygenic risk score, that provides a more comprehensive estimate of someone's genetic risk.

Although polygenic risk scores have shown promise for predicting cancer risk in the general population, it has not been known whether such scores are also associated with the risk of subsequent cancer among childhood cancer survivors .

To find out, the researchers looked at the association between polygenic risk scores and risk of basal cell carcinoma , female breast cancer, thyroid cancer, squamous cell carcinoma , melanoma, and colorectal cancer among 11,220 childhood cancer survivors from two large cohort studies. For all of these cancers except colorectal cancer, polygenic risk scores derived from GWAS in the general population were associated with the risk of these same cancers among childhood cancer survivors.

The researchers then looked at basal cell carcinoma, breast cancer, and thyroid cancer—malignancies that occurred most often in the combined data set and that are strongly linked to radiation therapy —to examine the joint effect of polygenic risk score and treatment history. They found that risk associated with the combination of higher-dose radiation exposure and higher polygenic risk score was greater than would be expected based on simply adding the risk associations of each individual risk factor.

For basal cell carcinoma, a high polygenic risk score was associated with 2.7-fold increased risk compared with a low polygenic risk score among survivors. History of higher radiation exposure to the skin was associated with a 12-fold increase in risk, compared with lower radiation exposure to the skin. However, survivors with high polygenic risk scores and higher doses of radiation to the skin had an 18.3-fold increased risk of basal cell carcinoma, compared with those with low polygenic risk scores who had received lower radiation doses to the skin.

Moreover, by age 50, survivors with higher polygenic risk scores and higher radiation exposure had a greater cumulative incidence of basal cell carcinoma, breast cancer, or thyroid cancer than those with lower polygenic risk scores or lower radiation exposure. For example, among female survivors who had radiation to the chest, 33.9% of those with a high polygenic risk score had been diagnosed with breast cancer by age 50, compared with 21.4% of those with a low polygenic risk score .

One limitation of the study is that the populations included in the analysis were predominantly of European ancestry, so additional studies are needed in diverse populations. Furthermore, polygenic risk scores are not yet used routinely in the clinic, although they may one day inform screening approaches or other clinical decisions.

"Although these results suggest that polygenic risk scores could play a role in improving guidelines for long-term follow-up of childhood cancer survivors exposed to radiation, right now they are not sufficient on their own to alter existing guidelines," Dr. Gibson noted.

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Holes – A Survivor’s College Essay

One year ago, Matthew Buff, a leukemia survivor, was fine-tuning his college applications. Today, he is a busy freshman at Emory University majoring in biology on a pre-med track. Matthew's personal goal is to become a pediatric oncologist focused on genetic research. The following is his college admissions essay. 

A round piece of silicone wrapped in a metal ring about the size of a quarter. If you tip it slightly, at just the right angle, where it catches the light, you would see hundreds of tiny holes covering the entirety of its surface. A miniature vacated battlefield of a war once won. It may not look like much to most people, but this tiny piece of plastic riddled with needle holes called a port or port-a-cath, helped to save my life and is now my visual inspiration to help others.

In the beginning, each hole could have easily represented another round of chemotherapy, spinal tap, blood transfusion, hospitalization, surgery or enrollment into a new study to treat my leukemia. They could also represent another day unable to attend school, each time being isolated from friends, and too many middle-of-the-night trips to the emergency room that would ultimately lead to another round of pokes, tests and abruptly waking to the beeping alarm of my IV pole early the next morning.

However, as my body has recuperated over the past five years since completing cancer treatment, the meaning of each hole has also transformed. Each hole now represents a lesson learned, a person met through my experience and the opportunity to make impactful change or people affected by catastrophic illness.

My parents and doctors have always encouraged me to not let my experience with cancer define me. I believe I have done a good job of incorporating that into my daily life, relationships and pursued interests. However, as I have matured and started to gain new experiences in life, I have chosen to reconnect with my past and allow it to acutely influence my perspective. I can’t help but to see the world from a slightly different angle than my peers after experiencing the delicateness and resiliency of life by age 12. I no longer view those years in and out of the hospital as negative, but a gift to help shape my abilities and sharpen my purpose.

From a very young age, I’ve learned to be an advocate for myself, to be an effective communicator, how to endure and thrive through challenges, become a capable and independent learner and find joy in contributing back to the community that surrounded me during my time of need. I want to now expand on those experiences and create new and meaningful relationships within the college environment that will continue to mold how I see the world and my future contributions within it.

I want to bravely explore other “holes” people have endured within their own lives, sit with them, and begin to find ways to alleviate their struggles through the commonalities of the human experience. If we can appreciate our differences, yet focus on what connects us, I believe there would be more peace in the world and fewer opportunities for any kind of pain and suffering. Empathy and compassion, in combination with technology and research, has the potential to redefine health and care. I intend for my experience and knowledge to be part of this progress.

My current objective is to build my college education with a concentration in biology and life sciences with the goal to become a research oncologist. Beyond my academic interest in those areas, I believe shifting my experiences from patient or receiver of care, to student of science with the intent to deliver care, will provide me the knowledge and holistic perspective to begin to develop the passion and endurance necessary to make a life-long commitment to healing through medicine.

We can’t always choose the experiences that shape us into who we are meant to be, but we can utilize them to empower ourselves, inspire each other and help others. Holes don’t have to be permanent; they can be the necessary foundation to begin to build something important and meaningful. We must be willing to excavate our own comfort, take risk, overcome challenges, plant new footings and create solutions to fill the gaps that are exposed in both our own lives, and in the lives of the people around us. Sometimes, if we look at things from a slightly different angle, like when the light reflects off my port, we can find new solutions to effectively and completely fill each new hole.

Written by Matthew Buff   Matthew was diagnosed with acute lymphoblastic leukemia in March 2009. Now six years beyond treatment, he is a college student working towards his goal of becoming a pediatric oncologist focused on genetic research. 

Support Research for Survivors like Matthew

Many childhood cancer survivors rely on survivorship clinics in order to make sure their cancer stays away and address the late-effects of their cancer treatment. Your donation supports the researchers who make these clinics possible for survivors like Matthew.

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• Published: 21 August 2018

Childhood cancer in the UK: achievements and legacy of six decades of research in Oxford

• Colin R. Muirhead 1  

British Journal of Cancer volume  119 ,  pages 659–660 ( 2018 ) Cite this article

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• Epidemiology
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Three papers on epidemiological research into childhood cancer, conducted over six decades at the University of Oxford, record the many achievements of these studies and their considerable impact, both in the UK and internationally. Future research should benefit from plans to make available the substantial resources that were collected over this time.

Large-scale epidemiological studies have a vital role in investigating the causes of childhood cancer and are the focus of three new papers that summarise long-term ground-breaking research carried out mainly at the University of Oxford. The first of these papers 1 concerns the Oxford Survey of Childhood Cancers (OSCC), a large case-control study originally conducted within the Institute of Social Medicine, before moving to the University of Birmingham. The other two papers 2 , 3 summarise research conducted over nearly 40 years by the Childhood Cancer Research Group (CCRG), based around the National Registry of Childhood Tumours (NRCT). I collaborated with the authors of these papers while working at the National Radiological Protection Board (latterly the Health Protection Agency’s Radiation Protection Division) and I served on CCRG’s Scientific Advisory Group. Consequently, I have been fortunate to witness many of the achievements that resulted from these studies.

Oxford Survey of Childhood Cancers

To initiate a detailed epidemiological study of all childhood cancer deaths in England and Wales (and later Scotland) in the early 1950s was an amazing achievement, and a testament to the perseverance and tenacity of the OSCC’s founder, Alice Stewart. The most notable result from the OSCC was the link found between childhood cancer and irradiation of the fetus from antenatal X-raying. This finding, which Bithell et al. 1 discuss at length, led in large part to the reduced use of antenatal X-raying. In addition, the OSCC confirmed an association with the father’s tobacco use that had been reported in smaller studies and was one of the first studies to report a raised cancer risk among children with a sibling who had also died of cancer. 1 The OSCC has some important limitations, which the authors highlight; e.g., the restriction to fatal cases of cancer and the potential for recall bias and for errors in data recording. Nevertheless, provided that the study’s limitations and their likely impact are well understood, I would concur with Bithell et al.’s view that data from the OSCC might still have a role in future research; e.g., when investigating rarer cancers for which many other studies have smaller numbers of cases. I am therefore pleased to hear of the plans to make data from this study generally available.

Childhood Cancer Research Group

The CCRG was established in 1975, after a government committee recommended setting up a national registry of childhood malignancies. Over the next four decades, the CCRG compiled data on about 57,000 cases of childhood cancer registered in Great Britain (and latterly also Northern Ireland) during 1962–2010. By drawing upon not only routinely collected data on incidence and deaths but also data from paediatric oncologists and clinical trials, the completeness and accuracy of the NRCT is likely to be very high. That said, childhood cancer might have been under-recorded in the past, as indicated by an analysis linking time trends in incidence rates to changes in diagnostic or registration procedures. 4 The NRCT data were highly valuable in studies of the descriptive epidemiology of childhood cancer incidence and survival, both within the United Kingdom and—as Draper et al. 2 highlight—as a leading component of international studies. The CCRG also collected data on congenital anomalies and genetic conditions, which permitted more detailed examination of familial factors than was possible using the OSCC; e.g., it highlighted the continued cancer risk among carriers of retinoblastoma gene mutations. 5 Furthermore, prompted by a study of cancer in the offspring of radiation workers, a series of controls was established for many of the cases. Together with birth records, this allowed case–control studies to be conducted on diverse topics such as birthweight, paternal occupation and proximity to high-voltage power lines. 2 The association with childhood leukaemia found in the original power line study attracted considerable attention, although—as Draper et al. 2 point out—this association was not seen in more recent UK data or in studies in other countries.

The CCRG conducted high quality epidemiological studies on a broad range of topics over many years, but the area that attracted perhaps the greatest interest was its research on ionising radiation. 3 Investigations into childhood cancer—and particularly childhood leukaemia—near nuclear installations have received much attention over several decades, and CCRG’s contributions to these studies and to reports by the UK Government’s Committee on Medical Aspects of Radiation in the Environment (COMARE) have been very important. Data from the NRCT were valuable not only in studying childhood cancer incidence in small areas around these installations (e.g., in COMARE’s 10th report 6 ), but also in placing these results in a wider context. Specifically, by analysing data on small area incidence throughout Great Britain, COMARE found that the geographical distribution of childhood cancers was non-random. 7 As well as these geographical studies, Kendall et al. 3 document how data for controls matched to these cases permitted detailed investigations of possible links with, for example, parental preconception irradiation and exposure to natural radiation. The association found between childhood leukaemia and natural gamma ray radiation 8 is especially interesting and it would be good to see if this finding could be replicated in cohort or case–control studies elsewhere; that said, few other countries would have sufficiently large and detailed data to allow such replication.

Following the end of the OSCC and the closure of the CCRG, what happens next? For me the issue is not where childhood cancer research is conducted but rather that resources are available to enable continued epidemiological research into childhood cancer in the United Kingdom and globally. Public Health England, which is now responsible for childhood cancer registration in England, is incorporating NRCT data dating back to 1985 into its ENCORE database. 9 Nevertheless, like Draper et al., 2 I believe that the full NRCT dataset covering cases diagnosed over almost half a century would still be a valuable research resource and—as with the OSCC—I am pleased that it might be available for future projects that would further our understanding of the causes of childhood cancer and might assist with prevention and treatment. This would be a fitting legacy to six decades of childhood cancer research in Oxford.

Bithell, J. F., Draper, G. J., Sorahan, T. & Stiller C. A. Childhood cancer research in Oxford I: The Oxford Survey of Childhood Cancers. Br J Cancer (2018).

Draper, G. J., et al. Childhood cancer research in Oxford II: The Childhood Cancer Research Group. Br J Cancer (2018).

Kendall, G. M., et al. Childhood cancer research in Oxford III: The work of CCRG on ionising radiation. Br J Cancer (2018).

Kroll, M. E., Carpenter, L. M., Murphy, M. F. G. & Stiller, C. A. Effects of changes in diagnosis and registration on time trends in recorded childhood cancer incidence in Great Britain. Br. J. Cancer 107 , 1159–1162 (2012).

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Sanders, B. M., Jay, M., Draper, G. J. & Roberts, E. M. Non-ocular cancer in relatives of retinoblastoma patients. Br. J. Cancer 60 , 358–365 (1989).

Committee on Medical Aspects of Radiation in the Environment (COMARE). COMARE 10th Report: The incidence of childhood cancer around nuclear installations in Great Britain . (Health Protection Agency, Chilton, 2005).

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Committee on Medical Aspects of Radiation in the Environment (COMARE). COMARE 11th Report: The distribution of childhood leukaemia and other childhood cancers in Great Britain 1969-1993 . (Health Protection Agency, Chilton, 2006).

Kendall, G. M. et al. A record-based case-control study of natural background radiation and the incidence of childhood leukaemia and other cancers in Great Britain during 1980-2006. Leukemia 27 , 3–9 (2013).

Public Health England. Childhood cancer registration in England: 2015 to 2016 . (Public Health England, London, 2016). www.ncin.org.uk/view?rid=3296 .

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Muirhead, C.R. Childhood cancer in the UK: achievements and legacy of six decades of research in Oxford. Br J Cancer 119 , 659–660 (2018). https://doi.org/10.1038/s41416-018-0222-7

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Research on Childhood Cancers

In 2013, Phineas Sandi received CAR T-cell therapy for acute lymphoblastic leukemia while participating in an NCI clinical trial. Phineas, holding the syringe that was used to infuse his CAR T cells, is cancer-free.

Why Research is Critical to Progress against Childhood Cancer

Cancer is the leading cause of death from disease among children in the United States. Although substantial progress has been made in the treatment of several types of childhood cancer over the past five decades, progress against other types has been limited. Even when long-term survival is achieved, many survivors of childhood cancer may experience long-term  adverse effects from the disease or its treatment.

Clearly, more research is needed to develop new, more-effective, and safer treatments for childhood cancer. And infrastructure and practices that allow researchers to learn from every child with cancer need to be put in place.

NCI has a number of programs that address childhood cancers specifically, and many of the institute’s other research programs are applicable to children with cancer even if they aren’t focused specifically on pediatric cancers. The institute supports a broad range of biomedical research that is relevant to this population, including:

• Basic research to enhance our understanding of the fundamental mechanisms of cancer
• Clinical research to test new treatments for safety and effectiveness
• Survivorship research to reduce the long-term adverse effects of cancer and its treatment

Dr. Brigitte Widemann Appointed as the Special Advisor to the NCI Director for Childhood Cancer

Brigitte Widemann, MD, Chief of the NCI Center for Cancer Research Pediatric Oncology Branch and practicing pediatric oncologist, has been appointed as Special Advisor to the NCI Director for Childhood Cancer.

Challenges in Childhood Cancer Research

One challenge in conducting research on childhood cancer is that cancers in children and adolescents are relatively uncommon. Childhood cancers represent less than 1% of all new cases of cancer diagnosed in the United States each year. Because the number of children with cancer is small and patients are treated at many different institutions, answering complex biological questions about childhood cancer requires collaboration.

As clinical trials are increasingly restricted to smaller numbers of patients who are defined by the molecular characteristics of their tumors rather than where the tumors originated in the body, collaboration among children’s cancer centers and a strong national clinical research program are essential to ensure that trials enroll sufficient numbers of participants to produce meaningful results.

In addition, more efficient ways to curate and share research knowledge—from genomic data to clinical outcomes—need to be developed to speed progress against childhood cancers.

NCI’s Rare Cancer Clinics Fostering Collaboration

Clinics bring together clinicians, patients, and advocates.

Another challenge is that, although most cancers in children (and adults) are thought to develop as a result of genetic changes that lead to uncontrolled cell growth and eventually cancer, the causes of most of these genetic changes in children are unknown. A small percentage of cancers in children can be linked to inherited genetic changes or to exposure to diagnostic or therapeutic radiation. But environmental causes have not been identified for most childhood cancers. As a result, identifying opportunities to prevent childhood cancer may be difficult.

In addition, the types of cancers children develop, and the biology of those cancers, generally differ from those of cancers diagnosed in adults. For example, tumors that originate in developing organs and tissues (such as retinoblastomas in the eye and osteosarcomas in bone) are more common in children.

Moreover, most childhood cancers have relatively few genetic alterations , and they often lack the genetic targets for treatments that have been developed and approved for cancers occurring in adults. And drugs that target signaling pathways that are active in some adult cancers might be difficult to use in children, given that many of these signaling pathways are essential for normal development.

Investigating Fusion Proteins in Childhood Cancers

The work of NCI’s FusOnc2 Consortium may one day lead to new treatments for children with cancer.

In fact, the genetic changes that drive childhood cancers are often distinct from those in adult cancers. For example, chromosomal translocations that fuse parts of different genes together to form fusion oncoproteins are common in childhood cancer. Although fusion oncoproteins are also found in some adult cancers, those found in children have proven particularly difficult to target. Another contributing factor to the small number of targeted therapies for childhood cancers is that the rarity of these diseases has been an impediment to commercial drug development.

Developing new treatments that are less toxic and cause fewer adverse effects (both acute and late) than current treatments and developing interventions to mitigate the adverse effects of both current and future treatments are additional challenges in childhood cancer research. The late effects of some childhood cancer therapies can have profound physical, emotional, and other consequences for survivors, including a shortened life expectancy. Finding ways to minimize and address these late effects to improve both the quality and the length of life of survivors is a research priority.

More information about cancer drug metabolism in children, which varies with developmental age, is also needed, as are better laboratory and animal models for screening and testing drugs for potential use in children and adolescents. The optimal use of radiation therapy in treating childhood cancers also needs to be defined so that efficacy is maintained or increased while long-term side effects are reduced.

Basic Research Drives Progress against Childhood Cancer

Virtually all progress against cancer in both children and adults has its origins in basic research, often in areas that are not directly related to the disease.

As an example, the discovery of CRISPR-Cas9 for gene editing has revolutionized the study of genes that control cancer cell growth and survival in both childhood and adult cancers. This discovery came from basic research in microbiology on how bacteria resist infections by viruses.

Another example had its origins in basic research on proteins called histones , which are DNA-binding proteins that provide structural support for chromosomes and help control the activity of genes. Scientists spent years investigating how these proteins are modified in the cell nucleus and the role of histone modifications in controlling when and to what extent genes are expressed.

The findings of this research became immediately relevant to a type of pediatric brain tumor called diffuse intrinsic pontine glioma (DIPG)  when it was discovered that most DIPG tumors have a mutation in the gene for the histone protein H3.3 that prevents a specific modification of the protein. This mutation in H3.3 is thought to be a driver mutation for DIPG and is associated with aggressive disease and shorter survival.

Promising Areas of Research on Childhood Cancers

Although our understanding of the biology underlying cancers that occur in children has increased tremendously in the past decade, there are still critical gaps in our knowledge. NCI has identified several areas in which more research is needed and has identified opportunities to use new approaches to gain additional insights into childhood cancers.

Immunotherapies for Childhood Cancers

Immunotherapy Drug Effective in Children with Relapsed Leukemia

In two studies, blinatumomab improved survival and was less toxic than chemotherapy.

Immunotherapies are treatments that restore or enhance the immune system’s ability to fight cancer. The field of cancer immunotherapy research has produced several new methods for treating cancer.

One example is chimeric antigen receptor (CAR) T-cell therapy , which is now used to treat some children with acute lymphoblastic leukemia . This therapeutic approach arose from decades of research on how the immune system works and how to manipulate it for clinical benefit.

The NCI Center for Cancer Research's Pediatric Oncology Branch (POB) conducts clinical trials of immunotherapy in pediatric and young adult patients, and the Children’s Oncology Group (COG) and the Pediatric Brain Tumor Consortium (PBTC) are evaluating immunotherapy treatments for selected childhood cancers. The Cancer Immunotherapy Trials Network (CITN) has a pediatric component that is developing clinical trials to test immunotherapies for children with cancer.

As part of the Cancer Moonshot, NCI has established the  Fusion Oncoproteins in Childhood Cancers (FusOnC2) Consortium , Pediatric Immunotherapy Discovery and Development Network (PI-DDN) , and Childhood Cancer–Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT).

Learn about POB, COG, and the other programs mentioned above in How NCI Programs Are Making a Difference in Childhood Cancer .

Molecularly Targeted Therapies for Childhood Cancers

NCI Research and the National Cancer Plan

The broad variety of research NCI supports on childhood cancers aligns with the goals of the National Cancer Plan. Read about the plan and explore each goal.

Molecularly targeted therapies are drugs or other substances that kill cancer cells by targeting specific molecules that are necessary for cancer cells to grow and survive. These therapies can be small-molecule inhibitors , monoclonal antibodies , or antibody–drug conjugates .

POB conducts clinical trials of targeted therapy in pediatric and young adult patients, and COG and the PBTC are evaluating targeted therapies for selected childhood cancers.

For example, results from an NCI-sponsored clinical trial, conducted by COG and led by Alice Yu, M.D., Ph.D., of the University of California, San Diego, led to the approval of the monoclonal antibody dinutuximab (Unituxin) to treat high-risk neuroblastoma .

Additionally, the PBTC studied the targeted agent selumetinib in children with relapsed or refractory low-grade gliomas . Reductions in tumor size were observed in most patients. Based on these results, COG researchers are studying selumetinib in phase 3 clinical trials for children with newly diagnosed low-grade glioma .

In 2017, NCI and COG launched the NCI–COG Pediatric Molecular Analysis for Therapy Choice (Pediatric MATCH) trial, which is testing molecularly targeted therapies in children with advanced solid tumors that are not responding to treatment. Tumor DNA sequencing is being used to identify those children whose cancers have a genetic abnormality that is targeted by a drug being studied in the trial.

How NCI Programs Are Making a Difference in Childhood Cancer

NCI Fiscal Year 2025 Professional Judgment Budget Proposal

Each year, NCI prepares a professional judgment budget to lead progress against cancer.

NCI recognizes that children are not just small adults and that specialized treatments tailored to childhood cancers are needed. NCI engages with researchers, clinicians, policymakers, advocates, and other partners to address this critical area of research. NCI supports an array of programs specifically to advance childhood cancer care and has renewed these initiatives and programs over numerous funding periods. Some of these programs include:

• The Pediatric Oncology Branch (POB) in NCI’s Center for Cancer Research conducts high-risk, high-impact basic, translational, and clinical research on childhood cancers. For example, POB investigators helped lead a team of international researchers who analyzed data from many patients with rhabdomyosarcoma , a rare childhood cancer that affects the muscles and other soft tissues, and found mutations in several genes that are associated with a more aggressive form of the disease . Genetic clues from the study could lead to more widespread use of tumor genetic testing to predict how children with this cancer will respond to therapy, as well as to the development of targeted treatments for the disease.
• NCI's Division of Cancer Epidemiology and Genetics (DCEG) conducts clinical, genetic, molecular pathology, and epidemiological studies of children at high risk of cancer. For example, DCEG researchers are leading a genome-wide association study of Ewing sarcoma to better understand the genetic architecture of the disease and to identify regions of the genome that may increase risk. DCEG researchers are also studying osteosarcoma to better understand the role that genetic variation plays in risk and patient outcomes and identify genes or genomic regions that may be important in osteosarcoma . The division also studies familial cancer syndromes, including Li-Fraumeni Syndrome , DICER1 syndrome , NF1 , and inherited bone marrow failure syndromes (IBMFS) , to better understand these disorders and investigate possible genotype/phenotype relationships that will improve clinical management and aid in genetic counseling.
• The T herapeutically Applicable Research to Generate Effective Treatments (TARGET) program uses genomic approaches to catalog the molecular changes in several types of childhood cancer to increase our understanding of their pathogenesis, improve their diagnosis and classification, and identify new candidate molecular targets for better treatments. For example, TARGET researchers performed a pan-cancer study of somatic alterations in nearly 1,700 pediatric leukemias and solid tumors and found major genomic differences when compared with adult cancers. The related Cancer Genome Characterization Initiative (CGCI) includes genomic studies of various pediatric cancers that often do not respond well to treatment.

Tailored Radiation for Kids with Medulloblastoma?

Study suggests the volume and dose could be tailored to the genetics of the patient’s tumors.

• The NCI–COG Molecular Analysis for Therapy Choice (Pediatric MATCH) precision medicine trial is a nationwide trial to explore whether targeted therapies can be effective for children and adolescents with solid tumors that harbor specific genetic mutations and have progressed during or after standard therapy. The trial, which is funded by NCI and conducted by COG, opened to patient enrollment in 2017. Germline testing is performed on all enrolled patients to assess whether the genetic aberrations identified in their tumors are inherited. The genomic data captured in the trial will serve as an invaluable resource for researchers seeking to understand the genetic basis of pediatric cancer.
• The Pediatric Brain Tumor Consortium (PBTC) is a multidisciplinary cooperative research organization devoted to identifying better treatment strategies for children with primary brain tumors.
• NCI participates in the Gabriella Miller Kids First Pediatric Research Program , which is building a rich data resource (sponsored by the National Institutes of Health) to increase knowledge about the genetic changes associated with childhood cancers and structural birth defects. The program allows investigators from different research communities to share data and collaborate, and it encourages new ways of thinking about childhood diseases.
• NCI supports several research projects for children, adolescents, and young adults (AYAs) with cancer as authorized by the Childhood Cancer Survivorship, Treatment, Access, Research (STAR) Act . The act enables NCI to enhance biospecimen collection, biobanking, and related resources for childhood and AYA cancers, with an emphasis on those cancer types, subtypes, and their recurrences for which current treatments are least effective.

Molecular Characterization Initiative for Childhood Cancers

Learn about this new childhood cancer research initiative.

• The Childhood Cancer Survivor Study (CCSS) is examining the long-term adverse effects of cancer and cancer therapy on approximately 35,000 survivors of childhood cancer who were diagnosed between 1970 and 1999. The study was created to gain new knowledge about the long-term effects of cancer and its treatment and to educate survivors and the medical community about the potential impacts of a cancer diagnosis and treatment. The results obtained from CCSS are used to help design treatment protocols and interventions that will improve survival, while minimizing harmful late effects. This research is also used to develop and expand programs for early detection and prevention of late effects in children and adolescent cancer survivors. For example, to better understand the genetic risk of second cancers, DCEG and CCSS researchers are collaborating on studies that aim to identify both common and rare genetic variants that may be associated with second cancers or other late adverse effects among survivors of childhood cancer. In a related study, DCEG scientists also are studying the long-term health of survivors of retinoblastoma , following a cohort of individuals with hereditary or nonhereditary disease to understand how retinoblastoma treatments impact risk for second cancers and long-term mortality.
• The New Approaches to Neuroblastoma Therapy (NANT) Consortium consists of a multidisciplinary team of laboratory and clinical scientists focused on improving outcomes for patients with high-risk neuroblastoma by discovering mechanisms of resistance to therapies, discovering targetable vulnerabilities driving resistance, and translating these insights into clinical trials. NANT works closely with COG to translate their experimental therapy findings into COG phase 3 clinical trials. Their findings on the tumor microenvironment , tumor response to therapy, and the application of cellular therapies to solid tumors have implications beyond neuroblastoma.
• The RACE for Children Act requires that all new adult cancer drugs also be tested in children when the molecular targets are relevant to a childhood cancer. NCI launched the Pediatric Preclinical in Vivo Testing (PIVOT) program to systematically evaluate new agents in genomically characterized models of childhood cancer. The primary goal of the PIVOT program is to develop high-quality preclinical data to help pediatric cancer researchers identify agents that are most likely to show significant anticancer activity when tested in the clinic against selected childhood cancers. NCI also plans to partner with the Food and Drug Administration, academia, and pharmaceutical companies in the Pediatric Preclinical Testing Public-Private Partnership (PPTP3) , which will be established by the Foundation for the National Institutes of Health to accelerate the pace and broaden the scope of pediatric preclinical testing of these agents.
• The Pediatric Genomic Data Inventory (PGDI) is an open-access resource to help researchers access data from genomic sequencing projects for pediatric cancer. The inventory lists ongoing and completed sequencing projects from the United States and other countries, the type of cancer studied, molecular characterization data available, and points of contact for each project.
• The Hyperactive RAS Specialized Programs of Research Excellence (SPOREs) focus on developing better treatments for neurofibromatosis type 1 and related cancers in children, adolescents, and young adults.
• The Fusion Oncoproteins in Childhood Cancers (FusOnC2) Consortium is a multidisciplinary, collaborative network of investigators studying select fusion oncoproteins implicated in childhood cancers that have a high risk of treatment failure and for which there has been little progress in identifying targeted agents.
• The Pediatric Immunotherapy Discovery and Development Network (PI-DDN)  is a collaborative research network identifying and advancing research opportunities for translating immunotherapy concepts for children and adolescents with cancer toward clinical applications. Primary goals of the PI-DDN include the discovery and characterization of immunotherapy targets for childhood and adolescent cancers, the development of new immunotherapy treatment approaches, and an improved understanding of the immunosuppressive tumor microenvironment in order to advance new, more effective immune-based treatment regimens for high-risk pediatric cancers.

Mapping Tumors across Space and Time

A new NCI program will create maps of cancers with unprecedented detail.

• The Pediatric Cancer Immunotherapy Trials Network (CITN) is using the clinical trials infrastructure of the CITN to conduct clinical trials of immunotherapy agents of specific relevance to children and adolescents with cancer. Examples of the types of novel treatments to be investigated by the Pediatric CITN include cellular therapies (e.g., CAR T cells targeting pediatric cancer antigens) and antibody-based therapies, including antibody-drug conjugates, that target surface antigens preferentially expressed on childhood cancers.
• The My Pediatric and Adult Rare Tumor (MyPART) Network  of scientists, patients, family members, advocates, and health care providers is working together to help find new treatments for rare childhood, teen, and young adult solid tumors that have no cures. Working as a team, researchers share data and help design experiments and clinical trials, advocates discuss issues important to patients, and clinicians share their experiences treating rare cancers. MyPART is part of the larger NCI Rare Tumor Patient Engagement Network.
• DCEG researchers collaborate with the International Childhood Cancer Cohort Consortium (I4C) and the Childhood Leukemia International Consortium (CLIC) , collaborations that pool information from cohort studies from around the world to answer questions about childhood cancers. I4C brings together multidisciplinary teams of epidemiologists, basic scientists, and clinicians, to collaborate on investigations into the role of early-life exposures on cancer risk. CLIC includes more than 30 case–control studies and has identified associations between childhood leukemia and environmental risk factors.

Financial Aid & College Scholarships for Cancer Survivors

College is an exciting time of life filled with new experiences, knowledge, and relationships. Although it is expensive, childhood cancer patients and survivors have several college scholarship and financial aid options.

Many organizations provide scholarships for cancer patients and survivors. In addition, there are financial aid opportunities available for people with certain disabilities.

Some scholarships are available for family members of cancer patients. Be sure to check the application criteria for all scholarships.

Tips for successful scholarship applications

• Every scholarship is different. Read the application and the organization’s website carefully. Note the application deadline as well as contact information, application requirements, and ability to renew the scholarship each year. Don’t miss an opportunity because of a simple mistake.
• In general, applicants must provide a letter from a doctor stating the original diagnosis and the age the patient began treatment. Allow the doctor plenty of time to write the letter.
• Some applications may also request letters of reference from teachers, coaches, or employers. Ask these people in advance. Don’t wait until the last minute.

Every scholarship is different. Read the application and the organization’s website carefully.

Scholarship essay tips

Many scholarship applications require an essay. Some will ask the same types of essay questions. You may be able to tweak an essay written for one scholarship to meet requirements for other applications.

Make sure to have someone knowledgeable about writing and grammar proofread your application and essay.

List of scholarships for cancer patients and survivors

The organizations that offer these scholarships are often funded by donations and endowments given in honor or in memory of other pediatric and young adult cancer patients.

Beyond the Cure

These scholarships are for childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation. Fifty-eight (58) $3,500 scholarships are awarded each academic year. The scholarship application period is from January – March of each calendar year.

Applicants must be:

• A childhood cancer survivor under the age of 25
• Diagnosed before the age of 18 with cancer or a high-grade or anaplastic brain tumor
• A citizen of the United States living within the country and attending school in the U.S.
• Accepted into a post-secondary school in the fall of the upcoming school year.

Visit the website for an application:

Beyond the Cure Ambassador Scholarship Program

Cancer for College

The website provides a number of different scholarship offers to different regions of the United States. Scholarship application period is November 1-January 31 each year. Applicants must be planning to attend a degree-earning program in the United States. Certain scholarships listed are relevant only for particular states. 

Applicants need:

• Their parents’ tax return(s)
• Their own personal tax return or proof of any income if they do not file a tax return
• A letter of good standing from the university attending
• 2 years of academic transcripts, confirmation of diagnosis letter
• Confirmation of Diagnosis letter
• A letter of recommendation from 1 person outside your family
• Total annual cost of attendance

Cancer for College Scholarship Application

National Collegiate Cancer Foundation

This organization provides services and support to young adults whose lives have been impacted by cancer and who have continued with their education throughout treatment or after their treatment. Each award is $1,000. Applications available in March. Deadline is May 15.

• A young adult cancer survivor or current patient between the ages of 18-35. Exceptions are made for age 17 if entering college in the fall following application.
• A U.S. citizen or permanent resident
• Attending or planning to attend an accredited college, university or vocational institution in pursuit of an associate’s, bachelor’s, master’s, doctorate or certificate as of the fall following application

National Collegiate Cancer Foundation Scholarships

The Ortlieb Foundation

The foundation was created to honor cancer survivor Evan Ortleib, who was diagnosed with non-Hodgkin lymphoma at age 16. Scholarships are awarded twice each year (spring and fall) and are valued at $1,000 each. The submission deadline for the spring semester is December 15, and the deadline for the fall semester is June 15.

Eligibility requirements include:

• Letter of cancer diagnosis and treatment of chemotherapy , radiation , or proton therapy from oncologist
• Proof of enrollment in full-time study at a four-year college or university
• Transcripts from high school or college
• Standardized test scores (ACT or SAT)
• 1040 tax documents from parents and self
• 2 letters of recommendation from teachers, mentors, or employers
• 250-word essay on academic and career goals

Ortlieb Foundation Scholarship Application

Ronald McDonald House Charities

The network of U.S. chapters, along with the global office of RMHC, offers scholarships to students in financial need who have demonstrated academic achievement, leadership, and community involvement. Since 1985, more than $56 million in scholarships have been awarded.

Scholarships are awarded by local RMHC chapters.

Find Your Local RMHC Chapter

The Ulman Fund for Young Adults

Scholarships available to young adults affected by cancer through their own diagnosis or through the diagnosis of a parent or sibling. Applicants must be between the ages of 15 and 39 during the time of diagnosis/treatment. Recipients will be awarded a total of $2,500 over two academic semesters, paid directly to the recipient’s school. Deadline is March 1.

Ulman Cancer Fund Scholarships

Scholarship databases

Finaid: the smartstudent guide to financial aid.

This page contains information about scholarships for cancer patients, cancer survivors, children of a cancer patient or survivor, students who lost a parent to cancer, and students pursuing careers in cancer treatment.

FinAid Scholarships

The Samfund

Grants and scholarships provided by the Samfund cover a wide range of post-treatment financial needs, such as (but not limited to): rent and mortgage assistance; health insurance premiums; car payments, insurance, and repairs; continuing education and loans; gym memberships; and mental health expenses. This group is no longer accepting applications for undergraduate tuition, as they have in the past, but rather is focusing on other school-related expenses. Applications open in the spring.

Applicants need to:

• Be between the ages of 21 and 39
• Either (1) finished active treatment with no evidence of disease, (2) completed one year of planned treatment and be in a stable condition, or (3) be receiving long-term hormonal or targeted therapy.

Samfund Cancer Survivor Grants

Scholarship resources for students with physical disabilities

San francisco state university disability resource center.

The Disability Programs and Resource Center at San Francisco State University has compiled a list of scholarships for students of various disabilities. A chart lists the organization offering the scholarship as well as general information and a link to each scholarship page.

SFSU Disability Resource Center Scholarships

University of Washington Disability Resource Page

The University of Washington has put together a page with tips on searching for funding for students with disabilities. In addition to links to sites offering scholarships, it also discusses other ways students might find information on funding, such as vocational rehab and other state programs. Scholarships are listed by type of disability.

Scholarships for vision-impaired students

American council of the blind (acb).

This organization offers scholarships to legally blind student going to technical, undergraduate, or graduate school.  Scholarships range from $1,500-$7,500. Application deadline is February 15.

American Council of the Blind Scholarships

American Foundation for the Blind (AFB)

The AFB offers multiple scholarships to legally blind students. Application deadline is April 1.

Descriptions of the scholarships, as well as the online application can be found at the above website.

American Foundation for the Blind Scholarship

Council of Citizens with Low Vision International – Fred Scheigert Scholarship

This program awards 3 students an individual prize of $3,000 to full-time college students with low vision. Applicants must meet visual acuity and academic guidelines. Scholarship guidelines, application, and vision certification are offered on the website from January 1 to March 15 of each year. The scholarship application must be completed online. Selected finalists will be required to complete a phone interview with committee members. Chosen winners are expected to attend an annual meeting in conjunction with the American Council of the Blind National Convention (usually in July).

CCLVI Scheigert Scholarship

National Federation of the Blind (NFB)

The NFB offers 30 scholarships to legally blind students each year, worth from $3,000 to $12,000. The winner must participate in the NFB national convention in July and all its scheduled scholarship program activities. Assistance is available for convention needs. Application due in March 31.

• Legally blind in both eyes
• A resident of the United States or Puerto Rico
• Planning to attend postsecondary study in the United States

National Federation of the Blind Scholarship Program

Christian Record Services for the Blind

The Anne Lowe Scholarship is awarded to blind students based on academic achievement and citizenship. Applications must be submitted or postmarked by April 15.

Application information/requirements:

• Currently registered as a full-time student in undergraduate studies at accredited college or university in the U.S.
• Minimum 3.0 GPA
• Written essay
• 3 letters of recommendation from non-family members

Scholarship is distributed in two parts during the school year

Anne Lowe Scholarship — Christian Record Services for the Blind

Scholarships for hearing-impaired students

Sertoma – service to mankind.

This group offers scholarships to individuals with hearing impairments and communicative disorders. Scholarships are available in $1,000 amounts. Application deadline is May 1.

Qualifications:

• Must have a minimum 40dB bilateral hearing loss, as evidenced on audiogram by an SRT & PTA of 40dB or greater in both ears
• Must be a citizen of the U.S.
• Must be pursuing a bachelor’s degree on a full-time basis at a college or university in the United States
• Must have a minimum cumulative 3.2 GPA on a 4.0 unweighted scale
• 2 letters of recommendation
• High school and/or college transcript
• Recent audiogram from a hearing health professional (must not be any older than two years)
• Hearing loss on application must be verifiable from audiogram

Sertoma Scholarships

AG Bell College Scholarship Program

AG Bell Scholarships are for high-achieving students who have bilateral hearing loss that was diagnosed before age 4.

• Must be using listening and spoken language as your primary communication mode
• Must attend a mainstream university and working toward a four-year undergraduate degree or a graduate degree

Hydrocephalus

Hydrocephalus association.

Scholarships applicants must be  17 or older with hydrocephalus. The scholarship funds must be used for an educational purpose, including, but not limited to, a 2-year or 4-year college, a high school post-graduate year to prepare for college, technical or trade school, an accredited employment-training program, or a post–graduate program. Scholarships are $1,000 each.

Application opens in January and is due April 15.

Hydrocephalus Association’s Scholarship Program

Learning-disabled

National center for learning disabilities.

Scholarships are available for 2 graduating high school seniors with documented learning disabilities and/or attention deficit hyperactivity disorder who are pursuing postsecondary educatoin.

National Center for Learning Disabilities Scholarships

• Epsilon Sigma Alpha (ESA)
• Sallie Mae Student Loans
• Federal Student Aid
• Financial Aid Scholarships

— Together does not endorse any branded product mentioned in this article.

— Reviewed: February 2020

College Classroom Accommodations

College and trade schools likely have services to help you when you need academic or physical accommodations for cancer-related problems. Sometimes cancer and treatment side effects can affect thinking and learning skills or your ability to get around from place to place.

Keep Up with School

Cancer treatment and side effects will likely disrupt your regular school schedule. Find resources to help you make the most of your education.

ACT or SAT Accommodations

Cancer patients may qualify for accommodations on ACT and SAT tests. Accommodations are changes made to the regular testing environment to allow people with disabilities to demonstrate their true ability on tests.

For Childhood Cancer Survivors, Inherited Genetic Factors Influence Risk of Cancers Later in Life

March 7, 2024 , by NCI Press Release

Genetics may one day help inform a childhood cancer survivor’s risk of subsequent cancers.

NIH-led study sheds light on the causes of new cancers among childhood cancer survivors and could have implications for their screening and follow-up.

Common inherited genetic factors that predict cancer risk in the general population may also predict elevated risk of new cancers among childhood cancer survivors, according to a study led by researchers at the National Cancer Institute (NCI), part of the National Institutes of Health. The findings, published March 7, 2024, in Nature Medicine , provide additional evidence that genetics may play an important role in the development of subsequent cancers in survivors of childhood cancer and suggest that common inherited variants could potentially inform screening and long-term follow-up of those at greatest risk. 

Childhood cancer survivors are known to have a higher risk of developing a new cancer later in life due to adverse effects of cancer treatment or rare inherited genetic factors. In the new study, the researchers evaluated the combined effect of common variants with history of radiation treatment and found the resulting elevated cancer risk was greater than the sum of the individual associations for treatment and genetic factors alone. 

“Knowledge about a person’s genetic makeup could potentially be useful in managing their risk of subsequent cancers,” said lead investigator Todd M. Gibson, Ph.D. , of NCI’s Division of Cancer Epidemiology and Genetics. “The hope would be that, in the future, we can incorporate genetics along with treatment exposures and other risk factors to provide a more complete picture of a survivor’s risk of subsequent cancers to help guide their long-term follow-up care.” 

To assess the contribution of common inherited genetic variants to risk of subsequent cancer in people who survived childhood cancer, the research team used data from genome-wide association studies, or GWAS, that had been conducted in large populations of healthy individuals. Such studies have identified thousands of common inherited variants associated with risk of different cancers. The risk associated with a single common variant is typically small, but the effects of large numbers of variants can be bundled into a summary score, or polygenic risk score , that provides a more comprehensive estimate of someone’s genetic risk. 

Although polygenic risk scores have shown promise for predicting cancer risk in the general population, it has not been known whether such scores are also associated with the risk of subsequent cancer among childhood cancer survivors. 

To find out, the researchers looked at the association between polygenic risk scores and risk of basal cell carcinoma, female breast cancer, thyroid cancer, squamous cell carcinoma, melanoma, and colorectal cancer among 11,220 childhood cancer survivors from two large cohort studies. For all of these cancers except colorectal cancer, polygenic risk scores derived from GWAS in the general population were associated with the risk of these same cancers among childhood cancer survivors. 

The researchers then looked at basal cell carcinoma, breast cancer, and thyroid cancer—malignancies that occurred most often in the combined data set and that are strongly linked to radiation therapy—to examine the joint effect of polygenic risk score and treatment history. They found that risk associated with the combination of higher-dose radiation exposure and higher polygenic risk score was greater than would be expected based on simply adding the risk associations of each individual risk factor. 

For basal cell carcinoma, a high polygenic risk score was associated with 2.7-fold increased risk compared with a low polygenic risk score among survivors. History of higher radiation exposure to the skin was associated with a 12-fold increase in risk, compared with lower radiation exposure to the skin. However, survivors with high polygenic risk scores and higher doses of radiation to the skin had an 18.3-fold increased risk of basal cell carcinoma, compared with those with low polygenic risk scores who had received lower radiation doses to the skin.

Moreover, by age 50, survivors with higher polygenic risk scores and higher radiation exposure had a greater cumulative incidence of basal cell carcinoma, breast cancer, or thyroid cancer than those with lower polygenic risk scores or lower radiation exposure. For example, among female survivors who had radiation to the chest, 33.9% of those with a high polygenic risk score had been diagnosed with breast cancer by age 50, compared with 21.4% of those with a low polygenic risk score. 

One limitation of the study is that the populations included in the analysis were predominantly of European ancestry, so additional studies are needed in diverse populations. Furthermore, polygenic risk scores are not yet used routinely in the clinic, although they may one day inform screening approaches or other clinical decisions. 

“Although these results suggest that polygenic risk scores could play a role in improving guidelines for long-term follow-up of childhood cancer survivors exposed to radiation, right now they are not sufficient on their own to alter existing guidelines,” Dr. Gibson noted.

Gibson TM, et al. Polygenic risk scores, radiation treatment exposures and subsequent cancer risk in childhood cancer survivors . Nature Medicine . 2024. 

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Essay on Cancer for Students and Children

500+ words essay on cancer.

Cancer might just be one of the most feared and dreaded diseases. Globally, cancer is responsible for the death of nearly 9.5 million people in 2018. It is the second leading cause of death as per the world health organization. As per studies, in India, we see 1300 deaths due to cancer every day. These statistics are truly astonishing and scary. In the recent few decades, the number of cancer has been increasingly on the rise. So let us take a look at the meaning, causes, and types of cancer in this essay on cancer.

Cancer comes in many forms and types. Cancer is the collective name given to the disease where certain cells of the person’s body start dividing continuously, refusing to stop. These extra cells form when none are needed and they spread into the surrounding tissues and can even form malignant tumors. Cells may break away from such tumors and go and form tumors in other places of the patient’s body.

Types of Cancers

As we know, cancer can actually affect any part or organ of the human body. We all have come across various types of cancer – lung, blood, pancreas, stomach, skin, and so many others. Biologically, however, cancer can be divided into five types specifically – carcinoma, sarcoma, melanoma, lymphoma, leukemia.

Among these, carcinomas are the most diagnosed type. These cancers originate in organs or glands such as lungs, stomach, pancreas, breast, etc. Leukemia is the cancer of the blood, and this does not form any tumors. Sarcomas start in the muscles, bones, tissues or other connective tissues of the body. Lymphomas are the cancer of the white blood cells, i.e. the lymphocytes. And finally, melanoma is when cancer arises in the pigment of the skin.

Get the huge list of more than 500 Essay Topics and Ideas

Causes of Cancer

In most cases, we can never attribute the cause of any cancer to one single factor. The main thing that causes cancer is a substance we know as carcinogens. But how these develop or enters a person’s body will depend on many factors. We can divide the main factors into the following types – biological factors, physical factors, and lifestyle-related factors.

Biological factors involve internal factors such as age, gender, genes, hereditary factors, blood type, skin type, etc. Physical factors refer to environmental exposure of any king to say X-rays, gamma rays, etc. Ad finally lifestyle-related factors refer to substances that introduced carcinogens into our body. These include tobacco, UV radiation, alcohol. smoke, etc. Next, in this essay on cancer lets learn about how we can treat cancer.

Treatment of Cancer

Early diagnosis and immediate medical care in cancer are of utmost importance. When diagnosed in the early stages, then the treatment becomes easier and has more chances of success. The three most common treatment plans are either surgery, radiation therapy or chemotherapy.

If there is a benign tumor, then surgery is performed to remove the mass from the body, hence removing cancer from the body. In radiation therapy, we use radiation (rays) to specially target and kill the cancer cells. Chemotherapy is similar, where we inject the patient with drugs that target and kill the cancer cells. All treatment plans, however, have various side-effects. And aftercare is one of the most important aspects of cancer treatment.

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