Children diagnosed with many cancers today are living longer than they have in decades. For care teams, that progress has brought greater attention to a longer-term question: What will a child’s life look like years, even decades, after treatment ends?

MCW Cancer Center researchers are looking further down the road. They’re studying how the brain changes after treatment, how soon families want to start learning about survivorship, and what can be done to preserve a child’s fertility for the future, starting as young as infancy.

Rachel Phelan, MD, MPH, has built much of her career around that long view. A professor of pediatrics at MCW and pediatric blood and marrow transplant (BMT) physician at Children’s Wisconsin (CW), Dr. Phelan cares for patients through treatment and, in many cases, for years afterward.

“When you’re dealing with something like cancer, you really become a part of that patient and family’s life, potentially for a really long time, especially with what I do in taking care of long-term survivors,” said Dr. Phelan. That relationship has given her a close view of how cancer and its treatment can follow a child as they grow.

Planning for Next Steps, Sooner

In her 10 years as an attending physician at CW, Dr. Phelan has seen significant advances in cancer treatment and survival. But getting through treatment is only part of the equation. More than 60% of childhood cancer survivors will develop a chronic condition related to their treatment, she said, and many of those conditions can be treated or managed if caught early.

In 2017, based on findings from a study led by a team of CW psychologists who work closely with cancer survivors, the Next Step Survivorship Program developed the “Bridge to Next Steps” program to help patients and families better prepare for life after treatment. The team meets with families a few months before treatment ends and again a few months after; they assess coping post-end of therapy and discuss the treatment a child received, potential long-term risks, surveillance plans, and survivorship resources.

“We used to wait until the two-to-five-year mark after treatment ended to have that conversation, but families wanted to start sooner,” said Dr. Phelan, the program’s medical director.

Now, families begin looking ahead while treatment is still fresh. They learn what to watch for, how their child will be followed, and perhaps most importantly, that finishing treatment does not mean they are on their own.

Some of those conversations reach far into a child’s future, including whether they may someday want children of their own.

Dr. Phelan is also co-director of the CW Onco-Fertility Program, which helps families understand how cancer treatment may affect a child’s future fertility and what can be done to preserve it. Before the program was established in 2019, fertility was one of many potential side effects discussed with families. Dr. Phelan said she would later see survivors deeply concerned about their ability to have children because preservation options had not been extensively discussed before treatment.

Today, a dedicated fertility navigator meets with families to explain their child’s individual risk and available options. Advances in the field mean fertility preservation can now extend even to infants and children who have not yet gone through puberty.

For boys, CW offers testicular tissue cryopreservation through a research protocol, preserving tissue that investigators are studying for its potential future use in fertility treatment. For girls, ovarian tissue cryopreservation has been available at CW for the past year.

“Previously, patients had to travel to Northwestern University in Chicago for the procedure, adding travel, lodging, and other logistics to an already overwhelming time,” Dr. Phelan said.

Offering the procedure locally removes one more barrier while allowing fertility specialists, oncologists, and transplant physicians to closely coordinate care and keep cancer treatment on schedule.

When Cancer Treatment Leaves an Invisible Mark

Dr. Phelan is also investigating a long-term effect that is much harder to see. In collaboration with Adam Greenberg, PhD, associate dean and professor in the Department of Biomedical Engineering, they launched a study exploring cancer-related cognitive changes in patients who undergo blood and marrow transplantation.

The team knows that childhood cancer treatment and cellular therapies such as transplantation can affect cognition. What is less clear is when those changes occur, how significant they are, and which functions of the brain are most affected.

Their study is enrolling patients undergoing transplants as well as long-term survivors. Using neuropsychological testing and functional MRI, researchers are examining changes in areas such as memory and attention. By better understanding what is changing and when, they hope to develop clinical trials testing interventions that could improve cognitive function over the long term.

It’s a difficult area to study because so many factors can influence cognition. But the stakes become clear when Dr. Phelan talks about what cognitive health can mean years later. “The ability to return to school, the ability to get a job, all of those things can potentially be impacted in the long run if a patient develops these side effects related to their treatment,” she said.

And as more children survive cancer, those years ahead matter more than ever. For Dr. Phelan, they are also one of the rewards of doing this work.

“I get to see them graduate from high school, graduate from college,” she said. “I actually went to the first wedding of one of my patients recently, which was incredible.”