25-Year Inaugural Childhood Cancer Report

Making progress in the fight against childhood cancer.

When putting together this report, the South Carolina Childhood Cancer Taskforce united leaders in pediatric cancer, epidemiology and public health throughout the state. Working through more than two decades of data on childhood cancer in South Carolina, they put together a report that gives leaders in health care and families of those facing a cancer diagnosis a more informed look at changes in prognosis and more.

This report was made possible thanks to high-quality cancer surveillance data maintained by the South Carolina Central Cancer Registry under the Department of Public Health. The report is the product of tremendous statewide collaboration between South Carolina’s three pediatric cancer hospitals, the South Carolina Cancer Alliance, the South Carolina Central Cancer Registry and the University of South Carolina’s School of Medicine and Arnold School of Public Health.

Childhood Cancer Report

So, I was already pulling into the parking lot, and I called her doctor's cell phone number. She answered, and she said, "Brandy," and I said, "Maggie, Emma's going to be admitted into a children's hospital immediately today." They're worried that it might be the C-word. That's what she said to me over the phone, and I just kind of—it just takes your breath away, you know.

I'm going to talk, but to have that happen to me, where it just renders me speechless, that's something that doesn't happen very often. I just remember everything starting to spin. It really started sinking in that I'm in a hospital on a cancer floor for kids, and my kid's got cancer. You literally have to throw your hands up and say, "God, take care of it, and use the intelligent people you've put on this Earth to save kids. Put them in charge of it."

In South Carolina, on average, we have around 200 cases of childhood cancer every year. These children come from across the state. There are many different types of childhood cancer. Some of the most common types we see are lymphomas, leukemias, and brain and central nervous system tumors.

The South Carolina Cancer Alliance has worked for a long time with South Carolina's Department of Public Health to understand the burden and changing trends of cancer in the state. They realized they had not specifically looked at childhood cancer and wanted to commission a report on childhood cancer in South Carolina. From there, we set to work building the task force to put together this inaugural report.

Really, what we're trying to do is look at how different cancers have been prevalent here in the state. Has the incidence increased, decreased, or stayed the same? How are we doing in terms of our treatments? Are we curing more kids? Are there more children that aren't doing well and dying from it? We wanted to delve into this and give our citizens a snapshot of the state of childhood cancer in South Carolina.

We were honest with her from the beginning: "Look, your blood is sick, and you've got to get this medicine. If you don't do what the doctors tell you to do, you could die." I wanted her to know how important it was to follow every protocol. Whatever medicine, poke, pride, or procedure, everything was necessary for her to survive. And she was very adamant about living.

What gave me the most hope was seeing how strong she was. Even when she was bald, sick, throwing up, and couldn't move, she persevered and made it through all that.

We have three children's hospitals in South Carolina that treat childhood cancer: Prisma Health Children’s Hospital in the Midlands, in the Upstate, and the Medical University of South Carolina. We had pediatric oncologists and leaders from each of those children's hospitals join the task force to share their expertise. We also included leaders from the Department of Public Health and the University of South Carolina.

This report, which we're talking about today, the 25-year history of childhood cancer in our state, is the first time we've done a comprehensive report specifically about cancer in children. Most of us have spent our careers taking adult treatments and trying to figure out how to make them work and fit for children. What we really want to see is an emphasis and priority on children's cancer specifically. That's going to help push survival rates and improve survivorship, truly enhancing what it means to be a childhood cancer survivor.

We fully endorse this report being presented today. The three children's hospitals that provide treatment for cancer fully support it and will work together to use this information for the betterment of South Carolina's children with cancer.

I would encourage everyone to learn more about childhood cancer by reading the report. This will also help people understand the burden of childhood cancer in our community here in South Carolina. We know from the report that children from all over the state have been impacted by cancer, and there may be a child in your community or in your child’s school who is facing childhood cancer. I would also encourage you to get to know them and see if there’s anything you can do to support them along their journey.

I've learned that only 4% of all the funding that goes toward cancer research goes toward childhood cancer research. Any type of organization that can put money specifically toward childhood cancer—that's what I think would help the most.

My hopes and dreams for her during treatment, while she continues treatment, are that she stays strong, persistent, happy, and continues to go to school, make friends, and, most importantly, be happy.

This report lays a broad foundation for future childhood cancer research, advocacy and intervention in South Carolina. By illustrating 25 years of South Carolina data on the incidence, survival and mortality of childhood cancer, we will be taking an important step together in understanding and improving outcomes for children and adolescents with cancer statewide.

To create the best foundation for the future of care, we must understand the past and present landscape of childhood cancer across the state.

Go to the SC Cancer Alliance Website to view the full report

Childhood cancer survival rates in South Carolina

The information below – a preview of the more complete picture included within the full report – provides a hopeful and inspiring glimpse of how improved access to cancer care and new technologies and research have helped our youngest patients survive and thrive after a cancer diagnosis.

Between 1996 and 2020 in South Carolina

4,457 children were diagnosed with cancer
716 children died

Percentage change from 1996 to 2016: Childhood cancer survival 11% ↑

Percentage change from 1996 to 2020: Childhood cancer mortality 21% ↓

Statewide progress in childhood cancer survival rates

84% relative survival at 5 years from childhood cancer diagnosis.
This marks an 11% improvement in survival (1996-2016).
The mortality for childhood cancer has declined 21% (1996-2020).
Survival improved for 8 of 11 cancer types.

Demographics and future health of childhood cancer survivors

More and more patients are becoming childhood cancer survivors.
These survivors come from across South Carolina with 15% diagnosed in rural areas.
Among those who survived at least 5 years from cancer diagnosis, 2,812 are still alive while 150 patients have died.
Black patients had a relatively higher risk of death beyond 5 years from cancer diagnosis.
Most childhood cancer survivors will face a serious health condition by middle age due to cancer treatments in childhood.

Changes in childhood cancer epidemiology

Between 2001 and 2020, the incidence rate of childhood cancer increased 11% in South Carolina, 13% in the South Atlantic Region, and 8% in the United States.
The incidence rate of childhood cancer in South Carolina remained lower than the overall regional and national rates.
We identified rising state incidence trends for childhood lymphoma and leukemia.

Cancer disparities

Though the gaps have narrowed, relative survival among Black and Hispanic children in South Carolina remained lower than white children with cancer.
Black children had the lowest survival of all groups.
White children had the highest incidence of childhood cancer, and the incidence gap between white and Black children has widened over time.
Childhood cancer incidence was also persistently higher in urban as compared to rural areas.

Race and ethnicity	Incidence rate	5-year relative survival	Mortality rate
Non-Hispanic White	18.1%	86%	2.2
Non-Hispanic Black	12.7	80%	2.5
Hispanic	13.4%	83%	^

Rates per 100,000 individuals at risk (2016-2020), survival estimates for cases diagnosed (2012-2016), ^suppressed due to fewer than 16 cases.