If your child has been diagnosed with cancer, it’s terrifying, even after cancer waves a white flag and doctors pronounce remission or cured.
And if you’re a childhood cancer survivor yourself, you know how closely you keep an eye on every little change in your body, wondering, worrying that the cancer creature has crashed back into your life.
Although every cancer is different, and every person is different, Spectrum Health Medical Group pediatric oncologist Beth Kurt, MD, said the common element key among all survivors is maintaining regular doctor visits to monitor the body’s activity.
Dr. Kurt, who co-directs the After-Care and Transition Clinic for childhood cancer survivors at Helen DeVos Children’s Hospital, said a multi-disciplinary team approach helps monitor the physical and emotional side effects of cancer.
“For some cancers, surgery is curative,” Dr. Kurt said. “The side effects are really about where the surgery occurred. For other cancers, where chemotherapy was given, side effects depend on what agents are used.”
And radiation? That, too, comes with its own potential side effects that can linger decades after the treatment has wiped out cancer cells.
“It’s hard to encapsulate what ones to expect and what ones might be outliers,” Dr. Kurt said. “This is why we have our After-Care and Transition Clinic. We review the kind of cancer they had, look at the treatments they received and any major complications.”
During the two-hour patient visit, cancer survivors talk with a nurse, nurse practitioner, physician, psychologist and social worker.
“It’s a multi-disciplinary approach,” Dr. Kurt said. “We’re really trying to address the person’s health as a whole. Part of that means really looking at the psychological well-being of the survivor. It’s a big burden to carry thoughts about relapse, am I going to be healthy, is something like this going to happen to me again. …We want to address some of the anxiety that goes along with being a survivor of cancer.”
Results are impressive, though. Dr. Kurt said outcomes are much better today than they were in the 1960s and 1970s.
“The great news is the majority of children are going to survive childhood cancer,” Dr. Kurt said. “And these kids have good quality of life. If you looked around, probably 1 in 750 people is a survivor of childhood cancer. This really is a message of hope.”
For children who survive cancer, the clinic recommends a comprehensive assessment three years after completing treatment.
“Some of the kids are quite young and not at a point where they can participate in their own health decision making,” Dr. Kurt said. “We do another visit when they’re 18 to 21.”
During the young adult visit, clinicians review the type of cancer and treatment and let the patient know what type of side effects they may experience, such as infertility or premature menopause.
Some of the kids were so young when they had treatments, they don’t have any memory of it. Dr. Kurt said it’s important that they know the names of the medicines they were treated with, and what to watch for.
Dr. Kurt wants survivors to know her team always has their backs.
Denial is very powerful. A lot of patients don’t like to be reminded that they’re sick. The point is to not wait until things are too far gone.
“We talk about it in comprehensive fashion,” she said. “‘You’re now 10 years out from your treatment of leukemia. Your risk of relapse is extremely low. So when you’re thinking about things to worry about, that shouldn’t be at the top of your list.’ Sometimes survivors need to hear that.”
They also need to know that if they received radiation as a child, they’re at risk for developing another cancer in the field of radiation. About 3 percent of childhood cancers will result in a second malignancy.
“If you had radiation to your leg, if you start to feel pain at the radiation site, feel a lump or see skin changes, that needs to be investigated immediately,” Dr. Kurt said. “Symptoms should prompt a workup.”
Leukemia is the most common type of childhood cancer. Many kids have no side effects after treatment.
Others develop learning disabilities, likely due to chemotherapy in the spinal fluid.
“We inquire with every visit how they are doing in school and we’re quick to refer them for neuro-psychological testing,” Dr. Kurt said. “That helps us determine how the child best learns and what resources are available to help in the classroom.”
Those exposed to anthracyclines during chemotherapy treatments are at potential risk for heart issues.
“The squeezing function of their heart may be compromised,” she said.
Dr. Kurt likes to monitor patients every few years with an echocardiogram “to keep an eye on how the heart is squeezing.” She also likes to proactively set them up with a cardiologist if changes are noted on the echocardiogram.
The team cautions patients to red flag shortness of breath or any change in activity tolerance.
“If someone was in overt heart failure, they may have swelling of their legs and trouble breathing while lying flat,” Dr. Kurt said.
Brain tumor concerns
Brain cancer can sometimes be treated with only surgery while other patients may need radiation and/or chemotherapy.
“The trouble with a brain tumor in a child is that the brain isn’t fully developed yet,” Dr. Kurt said. “Delivering radiation to the brain when it’s not fully developed can have significant consequences. Cognitive impairment is a big concern. The younger that patient, the more probable someone will have significant developmental delays.”
Dr. Kurt said it’s a sad side effect, but noted the alternative—brain tumors without treatment are almost universally fatal. Warning signs are headaches, vomiting, changes in behavior, level of alertness, movements and sensations.
“We always want to make sure the brain tumor is not coming back or the patient is not developing a new brain tumor which can be a risk from having radiation,” she said.
Abdominal and skeletal tumor concerns
These late effects can vary widely, depending on the organs involved and what type of chemotherapy or radiation the patient received.
“If you have a kidney tumor and they had to take your kidney out, you’re at risk for having issues with your other kidney,” Dr. Kurt said. “You may have to be closely monitored by a kidney doctor.”
Infertility/premature menopause concerns
Cancer treatments can sometimes cause reproductive issues.
“We’ve had to refer young women to pediatric endocrinology or gynecology for hormone replacement,” Dr. Kurt said. “Estrogen has many positive effects on the body, including on the bones. Getting them plugged into the right sub-specialist is the right thing to do.”
If someone has had radiation to the neck, hypothyroidism may become an issue.
But not all effects show up right away—sometimes problems crop up 10 or 20 years later.
Patients can take initiatives to help ward off potential late effects of treatments and cancer.
“Don’t smoke,” Dr. Kurt said. “Cigarette smoking and tobacco use in general is a terrible idea. Get regular exercise, eat right and watch your cholesterol. That’s really what it’s about—physical activity in a safe way. The most important thing is seeing your primary doctor, which is sometimes hard for young adults because they seem invincible.”
Sometimes, after a battle with cancer, it’s more comfortable to forget.
“Denial is very powerful,” she said. “A lot of patients don’t like to be reminded that they’re sick. The point is to not wait until things are too far gone. For example, if a person with only one kidney goes 15 years without seeing their doctor, has high blood pressure, and is spilling protein into their urine and we’ve done nothing to safeguard it, that really is an unfortunate thing because the damage can be permanent.”
Monitoring can make all the difference.
“If that same person has been plugged into a primary doctor and is treated for high blood pressure, that kidney is going to be in much better shape in the long run,” Dr. Kurt said. “We screen for diabetes and make sure diabetes is not contributing to a decline. Get regular checkups to make sure you’re not letting something go until it’s too late.”