A cancer diagnosis is devastating enough, but it may have an even more tragic impact when the patient has barely started his journey down life’s path.
Yet pediatric and young adult cancer diagnoses do happen—more commonly than some people realize.
The National Cancer Institute (NCI) defines childhood cancers as those diagnosed from birth through age 19. In the United States, the average cancer patient is 67 years of age, but more than 10,000 children are diagnosed with cancer each year. NCI statistics show that about one of every 10,000 children in the U.S. will develop cancer.
The good news is that new developments in pharmaceuticals have caused the death rate to drop dramatically. For every 10,000 diagnoses, about 1,500 cases will be fatal, according to NCI statistics, a mortality rate of about 15 percent.
Dr. Randal Olshefski, interim chief of the Section of Hematology/Oncology & Bone Marrow Transplant at Nationwide Children’s Hospital, says the types of cancer children develop change with age. “There are certain cancers seen in children under the age of 5 years that are rarely diagnosed once the child is over 10 years of age,” he says.
According to the NCI, leukemia and brain tumors account for more than half of all cancers in pediatric patients, with leukemia making up a full third of all childhood cancers. Olshefski says brain tumors account for 10 percent to 20 percent of cancer diagnoses in patients under age 19. He says acute lymphoblastic leukemia is the most common form of leukemia in children under age 15, but drops to third-most-common in those ages 15 to 18.
“In the older age group, we start to see more cases of lymphoma and certain type of bone and soft tissue cancers called sarcomas,” Olshefski says. Skin cancer, melanoma in particular, is on the rise among youth ages 12 to 18, he says. “This is clearly linked to sun exposure.”
Dr. Jerry Mitchell, a medical oncologist with the Zangmeister Center, treats many young adult patients. He says the most common cancer he sees in this age group is lymphoma, followed by invasive skin cancers, testicular cancer, and thyroid cancer in women. Mitchell says it can be difficult to extract meaning from statistics, so it’s hard to discern whether these cancers are caused by environmental or genetic factors. In many cases, he tends to lean toward the latter. “It may be something inherent in the biology of the cell,” he says.
Across the nation and around the world, doctors treat cancers while researchers struggle to find the root cause. Dr. Don Benson, a medical oncologist and hematologist at the Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, works with many young people who are battling blood cancers. He says the cause of these cancers largely remains a mystery. “For the vast majority, the cause is unknown,” he says. Doctors have not found a link to lifestyle or environmental factors, and often there is no family history of the disease.
Trends and Trials
Benson says the number of childhood cancer diagnoses is increasing, but is not a cause for alarm. It’s likely a function of a growing population. “The number of cases is on the rise, but it’s not necessarily something that couldn’t be accounted for by demographics,” he says.
Fortunately, successful treatment methods have grown as well. Although the drugs and techniques used to treat the disease have taken decades to develop, the cure rate is high and getting better all the time. “Treatment of pediatric cancers is one of the greatest success stories in all of oncology,” Benson says.
He points to Hodgkin’s lymphoma, a form of lymph cancer seen mostly in children. “It was not uniformly fatal, but it was a life-threatening cancer 30 years ago,” he says. “Nowadays, there is a cure rate of probably 85 percent.”
Benson attributes this higher cure rate to the fact that younger patients often participate in clinical trials. If a child or young adult is diagnosed with cancer, he says, that patient has roughly an 80 percent chance of being treated in the context of a clinical trial. On the other hand, only about 3 percent of older adults volunteer for experimental treatment—even though there are more trials available for adult patients. Benson says clinical trials are where the cure lies. “The patient receives the standard of care, plus whatever the latest, greatest, most promising thing is,” he says.
“People are funny when it comes to our kids having cancer,” Benson says. Parents’ willingness to step up and volunteer for new treatments helps everyone in the long run. “Participation in clinical trials mirrors outcome,” Benson says. “Leukemia, Hodgkin’s disease, kidney cancers, brain tumors—all of these are things that affect kids, and we can cure a lot of those diseases today.”
When she was diagnosed with acute lymphoblastic leukemia in 1984 at age 2, Susan Jacobs was enrolled in a trial in her home state of North Carolina, where she underwent four years of chemotherapy. She is now a healthy adult who dedicates much of her time and energy to wiping out cancer. “It’s strange, but the older I get, the more it means to me and the more relevance it has in my life,” she says. “I wake up every day knowing I’m a survivor. I feel a deep personal responsibility to pay it forward.”
Jacobs and her husband have raised more than $15,000 for cancer research through triathlons, marathons, the Pelotonia bicycle tour and more. “We’ll sing Christmas carols, host happy hours, stand in the middle of the road with a bucket—you name it—to raise money for these causes,” she says.
In spite of the lifelong impact innovative treatments can have, as Jacobs can attest, relatively few cancer patients are taking advantage of clinical trials. Benson says one of the barriers to participation, until a recent change in Ohio law, was that insurance companies generally wouldn’t pay for experimental treatment, even though the costs were no greater than traditional treatments. “In a clinical trial, everything that is considered investigational is paid for by the trial,” he says. “There was no added cost for the insurance company.” Ohio law now mandates that insurers pay for standard-of-care treatment in clinical trials. Benson says bipartisan legislators are working on similar federal reform.
Dr. Christopher George of Columbus Oncology & Hematology Associates says that in young adults, doctors continue to see the same types of cancers that have been common for years: lymphoma, leukemia, testicular cancer and breast cancer.
Survival rates vary widely based upon the type of cancer. George says younger patients sometimes receive a different type of testing or treatment depending on the disease. For testicular cancer, men should conduct self-exams and have a periodic exam by a physician, regardless of age. Young women are tested for cervical cancer with an annual pap smear, though that type of cancer is rare in younger women, George says. Doctors may take a more aggressive approach to detect breast cancer in high-risk patients.
“In breast cancer, certain sub-types do much worse than the type more commonly seen in elderly women,” George says. Because the disease can be so devastating, early detection is key. “Women with one of the breast cancer genes are screened with MRI scans to supplement mammograms since the increased breast density in younger women decreases the sensitivity of mammograms,” he says.
When a child or young adult is diagnosed with cancer, doctors move rapidly. While these types of cancers can be very aggressive, young people are generally better able to withstand a barrage of drugs, surgeries and/or radiation better than older people. “Kids are very resilient when it comes to cancer therapy,” Benson says. If a patient is on the border between child- and adulthood, doctors consult to determine whether a pediatric or adult treatment protocol will work best.
“Pediatric cancers are treated quite differently than most adult cancers,” Olshefski says. “The primary reason is that most pediatric cancers are aggressive and fast-growing. We see very few types of slow-growing or indolent cancers in children. Therefore the treatments are designed to be aggressive, both in terms for how quickly we start treatment but also in terms of the complexity and intensity of the treatment regimens.”
“The process usually happens pretty quickly, because a lot of these cancers can be fatal without rapid treatment,” Benson says. Doctors often admit children to the hospital immediately, instead of waiting for a firm diagnosis. “We may do a bone marrow or lymph biopsy so we can figure out exactly what’s wrong, and the process is done over a period of hours, or days at the most,” Benson says.
Younger adults may be allowed a bit more time for evaluation. “When you are dealing with leukemias, you have to move quickly,” Mitchell says. “With lymphomas and testicular cancers, you have more time to sit down and discuss important issues with the patient.” Those include how cancer treatment will affect the individual’s school, career and future fertility. “With a small child, these aren’t things you consider as carefully,” Mitchell says. “But with a young woman who is 23 or 24 and has Hodgkin’s disease, fertility is something that you have to discuss.”
Surgery, radiation and other methods all have a place in the treatment of pediatric and young adult cancer. But because such a high percentage of these cases are blood-borne illnesses, doctors rely heavily on pharmaceuticals. New developments are creating a chance for survival where there was none before.
In August, the drug brentuximab vedotin was approved by the U.S. Food and Drug Administration to treat relapsed Hodgkin’s patients. Previously, if a patient was treated with chemotherapy and a bone marrow transplant and the disease recurred, doctors had no further avenue of treatment. “If it came back, we had no way to slow it down, to improve chances of survival or anything,” Mitchell says. “Now we do.”
New developments in drug therapy are targeting cancer cells more specifically than in years past, leading to more effective therapies that are less devastating to the body. “In general, there is a movement toward treatments based on the biology of the cancer,” Benson says. Cancer drugs generally kill cancer cells by poisoning them, but newer drugs specifically target leukemia cells. Benson says the cure for cancer will come in the form of a drug.
“It is drugs that will cure cancer, because it is drugs that can reprogram the genetic material,” Benson says. “I tell my students that cancer is a software problem, not a hardware problem. If your computer freezes up, you don’t hit it with a baseball bat. You call someone in to reprogram the code so it can run again. That’s all cancer is—a bug in the software.”
In 2009, at age 25, Matthew Hare got the news that he was about to begin a life-or-death battle with cancer. Under Benson’s care, Hare fought multiple myeloma (a blood cancer) and amyloidosis, a condition in which proteins build up in the organs and complicate cancer treatment.
Hare spent seven weeks in the Cleveland Clinic, including two stints in the intensive-care unit while doctors got infections under control. He returned home just prior to Thanksgiving 2010 and wrapped up six months of chemotherapy on Thanksgiving morning. Fifty pounds lighter than before his diagnosis, doctors gave Hare a break for the holidays and encouraged him to gain some weight on before undergoing a bone marrow transplant in January 2011. “I am currently in complete remission and, thankfully, I am not having to currently undergo any treatments,” Hare says, aside from follow-up doctor visits every three months.
During his chemotherapy, Hare was reintroduced to a former girlfriend, who because a steadying influence—and more. “I told Dr. Benson he had a lot of pressure to make this happen,” Hare says. “After my bone marrow transplant and finding out I reached remission, I proposed to Kate and am thrilled to say she became my wife on Sept. 24, 2011.”
Hare says his experience fundamentally changed him. “There was a time that the doctors in Cleveland told my family and I that might not be going home,” he says. “I quickly came to the realization just how serious my situation was. In the end, I realized that knowing and understanding my mortality was going to be a strength and something I understood that most people at my age didn’t know. It changes you to the core.”
Today, Hare is helping to raise awareness of cancer and the search for a cure. He has participated in Pelotonia, Multiple Myeloma Opportunities for Research & Education and his family’s fundraiser, Baseball Coaches Against Multiple Myeloma. “Through this imperative fundraising we are making major strides in blood cancer research, much of which is starting here in Columbus and becoming world-renowned,” Hare says. “You have to make an impact every day. … In some manner, we have to make progress every single day.”
Hare says he found a rallying cry on the football-themed NBC television program “Friday Night Lights”: “clear eyes, full hearts, can’t lose.”
“That’s been so true,” he says. “This is a fight we can’t afford to lose.”
Reprinted from the February 2012 issue of Columbus C.E.O. Copyright © Columbus C.E.O.