Jasmine Jean is more than 30 years out from her original cancer treatments and her cancer is gone, but the experience is not behind her.
“I don’t feel like I’ve ever been cured because the late effects of cancer are so traumatic,” said Jean, who was diagnosed and treated for the rare muscle cancer rhabdomyosarcoma when she was 2 years old.
The overall health of many childhood cancer survivors, as reported by the survivors themselves, has not improved in parallel with the advent of better therapies and better survival rates, according to a new study published Monday in the journal Annals of Internal Medicine. The study looked at self-reported health from more than 14,000 pediatric cancer survivors treated between 1970 and 1999 and was led by researchers at St. Jude Children’s Research Hospital in Memphis.
And some recent childhood cancer survivors — those treated for the bone cancer osteosarcoma or leukemia — actually report worse health complications than survivors of the same diseases treated a decade or more earlier.
“This was a little disheartening, this study, because we’ve seen a great improvement in mortality,” said Dr. Wendy Leisenring, a biostatistician at Fred Hutchinson Cancer Research Center and a co-author of the study, which analyzed data from the Childhood Cancer Survivor Study or CCSS. The large, ongoing study, headquartered at St. Jude, follows survivors of childhood cancers. Leisenring leads the CCSS Statistical Center, which is headquartered at the Hutch.
Jean was finished with her treatment before she turned 5 — earlier than most children even form lasting memories. Now 36, the Bellingham, Washington, artist remembers much of her time in the hospital with crystal clarity. And the after-effects of her caustic treatments — mostly the high levels of radiation to her left pelvis, where the tumor was removed, and to her abdomen — are still with her.
Not all adult survivors of pediatric cancers suffer long-term effects. But a study published last year looking at data from the CCSS found that 80 percent of adult childhood cancer survivors report chronic health conditions, many of them severe.
For Jean, the ripples of childhood treatment have been numerous and ongoing. There’s the bladder inflammation, now mostly under control, she said. But at first, it caused Jean to urinate almost pure blood, and once she had started school, the pressure of her heavy backpack exacerbated it.
There’s the fact that her left leg and left side of her pelvis didn’t grow in parallel with her right side. Even after corrective surgeries to shorten her right leg, the bones in her left leg continue to degenerate, leaving her left leg 3 inches shorter than her right and causing considerable pain.
There was the time her uterus ruptured and had to be removed, along with her left ovary — Jean was five months pregnant and the organ was too damaged to expand as it should have. She’s been flirting with menopause ever since that surgery, she said, and is now dealing with the side effects of taking hormone replacement therapy.
And there are the secondary cancers and pre-cancers (all successfully treated) possibly related to her radiation treatments, which Jean mentions almost as an after-thought when listing the many ways cancer has left its mark on her life. The skin cancer in the area where she was irradiated. The precancerous colon polyps. The benign tumor over her eye that she recently had removed.
All these physical side effects took their toll on Jean’s mental health as well, she said, especially those problems that cropped up while she was still a child.
“Those were terrifying experiences for a child to go through,because you don’t really understand why it's happening, if it’s going to kill you,” she said. “You’ve been in life-or-death situations before, so every time you face a new and unknown experience, you brain goes back to the space of, ‘Am I dying?’”
Not all childhood cancer survivors have such a lengthy list of ongoing health problems, and different cancers and treatments carry different side effects. But Jean is far from alone. Researchers like those involved with the CCSS are adding to a growing appreciation of the indelible marks cancer and its associated treatment can leave on children, and how these marks can persist well into adulthood.
Last year, CCSS researchers published findings showing that children treated in the 1990s are living longer past their cancers than those treated in earlier decades. For patients treated in 1975, for example, about 63 percent would survive five years past their diagnosis. Those treated in 1999 had a nearly 80 percent chance of surviving as long. Additionally, many of those diagnosed and treated in later decades received less toxic, lower intensity therapies than earlier survivors.
So the researchers’ logical next question was whether survivors’ overall health has also improved in that timeframe, said St. Jude survivorship researcher Dr. Kirsten Ness, who is lead author on the study published Monday.
“Now that we have better survival over time and we’ve reduced late mortality, do the people who have been saved and who aren’t dying have a good quality of life?” Ness said. “How do they perceive their health?”
What they found surprised them: In the current study, the researchers report that childhood survivors diagnosed and treated in the 1990s are no healthier overall than those treated in the 1970s and ‘80s. And for survivors of certain cancers — namely osteosarcoma, or bone cancer, and various types of leukemia — their overall self-reported health is actually worse.
The researchers don’t know why self-reported health hasn’t improved, but they have a few theories. One is simply that the increased rate of survival in more recent decades means that those whose lives were saved are likely those who had the most severe disease — those who were more likely to have died if treated decades before — and thus received the most aggressive treatments.
“Patients are surviving now that wouldn’t have survived in the 1970s,” Leisenring said. “It’s a reminder that there can be long-term consequences to treatment.”
Their other explanation is a bit squishier. Because this analysis looked only at self-reported health as assayed by extensive questionnaires, it’s possible that there have been changes over time in how the survivors perceive their own health. This is not at all to say survivors treated more recently are making up problems, Leisenring said. Rather, as researchers and patients gain more knowledge of the long-term effects of cancer and cancer treatments, it’s possible that survivors are simply more aware of the potential effects of cancer treatment and more likely to recognize and report them in themselves.
When the researchers drilled down to study survivors of specific cancers, explanations for the lack of improvement in health became a bit clearer.
Survivors who were treated for leukemia in the 1990s had reported worse overall health than those treated in the 1970s. Slightly less than 10 percent of those treated for leukemia in the 1970s reported poor overall health, compared to close to 14 percent of those treated in the 1990s.
That may be due to increased use of specific treatments — such as chemotherapy administered through a spinal tap — in more recent decades, Leisenring said. Pain and neuropathy are known side effects of this procedure.
Patients with osteosarcoma treated in the 1990s had a big increase in self-reported pain, the study found. Nearly 37 percent of patients treated in the 1990s reported ongoing cancer-related pain, compared to about 24 percent of those treated in the 1970s.
Children diagnosed with osteosarcoma in the 1970s were far more likely to have the cancerous limb amputated than those treated in later decades, Leisenring said. Sarcoma treatments and surgeries have improved to the point that many survivors treated more recently didn’t have such extensive surgeries — but the increased levels of pain indicate that many survivors may not be receiving adequate pain management strategies or medication.
Jean, the rhabdomyosarcoma survivor, said that acupuncture and massage help her with many of her ongoing physical issues, but pain management continues to be an issue. Opiates help her. But due to numerous recent news reports about over-prescription of opiates and a spike in opiate addiction, many doctors are wary of prescribing the medicine on a long-term basis.
“Opiates have a really bad reputation. I’ve found that it’s very difficult to find a doctor that’s OK with chronic pain management of a 36-year-old adult,” Jean said. “There are different treatments that really work for different people, and I think the most important thing is to involve patients in the process of discovery of which of these treatments help.”
Although Ness and Leisenring are encouraged that more children’s lives are being saved from cancer, their findings on quality of life point to how much remains to be done, they said. Part of the issue may just be better communication of known survivorship issues with survivors’ care providers, Ness said. Childhood cancer survivors are different from the general population in many ways and it’s important that their primary care practitioners know the special issues for which they should be screening.
“There needs to be good transition of care,” Ness said. “When a child leaves the cancer center to go back to their general practice … there needs to be good transition to their particular internist and it needs to be fairly seamless.”
CCSS researchers are also hoping to conduct trials with different interventions to see if they boost survivors’ quality of life, Leisenring said, although those studies are still in the planning stage.
“We are obviously going to try and make sure as many people survive as possible,” she said. “So the next question is: How can we improve how they’re feeling about their health?”
For Jean, her health is about more than just receiving the right therapy or the right pills. It’s about a partnership with doctors and other people in her life who help empower her to take a central role in her healing, she said.
“Health and healing are different than surviving and the absence of illness,” she said. It’s also about “being OK with where you’re at in life.”
And, despite her long list of physical complications, Jean is grateful for her life — as it is.
Join the conversation. Talk about this story on our Facebook page.
Pediatric cancer research is the focus of this year's Hutch Holiday Gala, a fundraising event benefiting Fred Hutch research held Dec. 3.
Rachel Tompa is a former staff writer at Fred Hutchinson Cancer Center. She has a Ph.D. in molecular biology from the University of California, San Francisco and a certificate in science writing from the University of California, Santa Cruz. Follow her on Twitter @Rachel_Tompa.