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Long Lives, Well Lived

Recent research shows changes in childhood cancer treatment have extended the lives of childhood cancer survivors diagnosed within the past three decades.

As he takes a break from shadowing physicians at  St. Jude Children’s Research Hospital, 22-year-old Brennan Bergeron swears he never intended to pursue a career in medicine.

“But no matter how much I tried to stay away from it, I ended up finding my way back,” admits the former St. Jude patient.

The pre-medical student and long-term survivor of acute lymphoblastic leukemia (ALL) recently returned to the hospital to shadow staff who played a part in his cancer treatment, as well as Greg Armstrong, MD, of St. Jude Epidemiology and Cancer Control.

Armstrong is principal investigator of the Childhood Cancer Survivor Study (CCSS), the world’s largest comprehensive resource for survivorship research. A collaborative, multi-institutional study, the CCSS focuses on identifying and reducing the long-term effects of cancer treatments for survivors.

As any cancer survivor can attest, health concerns don’t stop once the cancer is gone. Armstrong is one of many St. Jude physician-scientists working to identify the long-term effects of cancer and its treatment, and to prevent those effects in future survivors.

Looking long term

The CCSS follows more than 35,000 childhood cancer survivors whose cancers were diagnosed and treated between 1970 and 1999, when they were ages 20 and younger.

“To be eligible, these children had to be five-year survivors of their primary disease,” Armstrong explains.

At its 2015 annual meeting, the American Society of Clinical Oncology (ASCO) highlighted results of a CCSS study. Armstrong was lead author of the study, which ASCO identified as one of four being presented that had the greatest potential to affect patient care.

The study reported that the 15-year death rate among five-year survivors is lower for survivors diagnosed in more recent eras, a decrease that coincides with changes in pediatric cancer therapy and follow-up care. Those changes included reductions in the use and dose of radiation therapy and chemotherapy drugs called anthracyclines. These therapies were used to treat such cancers as Hodgkin lymphoma; Wilms tumor, a cancer of the kidneys; and ALL, the cancer Bergeron had.

Greg Armstrong

Greg Armstrong, MD, Epidemiology and Cancer Control

Vigilance after treatment ends

Results of the CCSS suggest that doctors have learned how and when to back off of, or reduce, certain therapies and are better about recognizing and managing the long-term effects of treatment. But, certain cancer therapies still leave some survivors with an increased risk of health problems compared with siblings. The possible problems include a higher risk of breast cancer or brain tumors due to radiation, heart disease from chemotherapy or other serious health problems.

These problems may not appear until 15 to 20 years down the road, and the risks increase with time.

“As a clinician, when you walk into the room with a five-year survivor, you celebrate. You throw the confetti. In your mind, you imagine they’ve beaten it—they’re done, and they’re going on about their lives,” Armstrong says. “But the truth is that 18 percent of five-year survivors will be deceased by 30 years from diagnosis—that’s one in five. So, there’s still a battle beyond that five-year point, and our current findings suggest we are improving the rates of long-term survival.” 

John Sandlund and Brennan Bergeron

St. Jude—and John “Torrey” Sandlund, MD—have been part of Brennan Bergeron’s life for as long as he can remember. Today, Bergeron is 22 years old and plans to follow in the footsteps of his oncologist-turned-mentor.

Soaring survival stats

Although survivors still have a battle to face, it is a good sign that the research is evolving from five-year survivorship to decades-long survivorship. In the 1960s, less than 30 to 40 percent of children survived their cancer, Armstrong says, but currently more than 83 percent of children become five-year survivors.

“It was estimated in 2013 there were over 420,000 survivors in the U.S.,” Armstrong says, “and that by 2020 there will be over half a million.”

With this growing number of survivors, the focus of doctors and researchers is shifting to how to improve the health-related quality of life for long-term survivors, such as Brennan, into adulthood.

St. Jude for LIFE

One way St. Jude is doing that is through a unique research study called St. Jude LIFE. This initiative is inviting thousands of St. Jude cancer survivors to return to the site of their original treatment for periodic follow-up throughout adulthood. St. Jude is the world’s first institution to commit to this type of long-term follow-up research. Discoveries emerging from St. Jude LIFE are helping researchers design new therapies to help future generations of patients and to further improve the quality of life of today’s survivors.

Brennan Bergeron’s St. Jude LIFE visit also provided an unexpected version of long-term survivor support. His childhood oncologist-turned-mentor, John “Torrey” Sandlund, MD, told him about a St. Jude shadowing program and helped arrange his participation.

Bergeron says his career goal is to follow in Sandlund’s footsteps and become a pediatric oncologist at St. Jude. Someday, Bergeron hopes to approach patients and their families and help them feel the sense of security he and his family felt at St. Jude.

“You’re in good hands; I’m here to help,” he will tell them. “I’ve been in your shoes before. I’m a former patient, and I know what’s possible at this hospital.” 

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