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The end of cancer treatment is a joyful time for childhood cancer patients and their families. Friends throw confetti at “off chemo” parties. Patients ring bells or bang gongs after finishing radiation treatments.
However, this time of transition can also be a period of uncertainty and anxiety. It’s normal to feel this way.
The hospital has provided a safety net of information and support. Regular lab work, imaging scans, and clinic appointments provide a steady stream of updates about what’s going on with your child medically. Families going through the same situation are everywhere. They can immediately relate to your life.
“You really become close to your medical team and to the other families you see waiting for appointments,” said Shannon, mother of Griffin, 7, who was treated for childhood acute myeloid leukemia. “It’s like a family. You miss those friendships.”
Now Griffin returns to the hospital every few months for check-ups. Shannon is happy her son is finished with chemotherapy. But she misses the regular contact of the close network she was part of while Griffin was in treatment.
On the other hand, it is nice to do normal, everyday tasks like cleaning her own house, she said. A group of friends paid a cleaning service for her house during her son’s treatment, which was wonderful, but she likes returning to a regular routine.
After cancer treatment ends, patients will return to their cancer center on regular basis for follow-up check-ups, tests, and scans. This follow-up period lasts between 2 to 5 years, depending on the pediatric cancer center and the patient’s diagnosis. This phase is sometimes referred to as off therapy.
After this first follow-up period, patients move to long-term follow-up for childhood cancer survivors. The goal of long-term follow-up care is to help cancer survivors stay as healthy as possible and to monitor for late effects. Late effects are side effects of treatment that appear months or years later. The schedule and details of follow-up visits vary depending on the cancer center and the patient’s needs.
Any transition comes with challenges. The focus before has been getting through treatment. When treatment ends, you and your family must construct a new normal after cancer. Challenges may include:
Parents and patients, if old enough, should have a solid understanding of the patient’s cancer and treatment. Ask the care team about possible late effects of treatment.
Families will need to be able to communicate with other health care providers about the child’s medical background and needs.
Ask about access to medical records:
When patients make the transition to long-term follow-up care, they get a survivorship care plan. This includes a treatment summary and a plan for follow-up care.
Families can also put together their own summaries to help explain the patient’s medical history.
Reconnect with your child’s primary care provider. After the end of cancer treatment, this physician becomes your child’s main doctor for routine health care. Talk with the provider and with someone at the child’s pediatric cancer center to find out who to contact when you have questions about your child’s health. It is very common for parents to worry about who to call first – the pediatrician or oncologist.
Set up an appointment with the primary health care provider to talk about the child’s health care needs. Childhood cancer is so rare that pediatricians may work their whole careers without treating a patient with cancer.
Also, ask the provider if your child is due for any immunizations. Sometimes children may have missed certain vaccines during cancer treatment. If so, the Centers for Disease Control has the Catch-Up Immunization Schedule.
Inform other health care providers, such as dentists and optometrists, about your child’s cancer treatments and unique health care needs.
Assess your insurance coverage before returning home. If you don’t have adequate medical coverage, ask a social worker or nursing care manager for help locating resources.
Creating and maintain healthy habits is important for everyone. It is especially important for cancer survivors.
Ask the pediatric cancer center for a list of resources for cancer patients and survivors, such as support groups and summer camps. Do this even if you think you won’t need them. Having a child with cancer changes your family’s life forever.
Reach out to others to help make meaning from this life-changing experience.
Use the following list of questions and concerns to help have a conversation with your care team.
Source: Children's Oncology Group
Together does not endorse any branded product mentioned in this article.
Reviewed: September 2022