What happens during and after treatment for non-Hodgkin lymphoma in children?

During and after treatment for lymphoma, the main concerns for most families are the immediate and long-term effects of the lymphoma and its treatment, and concerns about possible recurrence of the cancer.

It is certainly normal to want to put the lymphoma and its treatment behind you and to get back to a life that doesn’t revolve around the cancer. But it’s important to realize that follow-up care is a central part of this process that offers your child the best chance for recovery and long-term survival.

Follow-up exams

It is very important for your child to have regular follow-up exams with the cancer care team for several years after treatment. The doctors will continue to watch for possible signs of lymphoma, as well as for short-term and long-term side effects of treatment. Doctor visits will be more frequent at first, but the time between visits may be extended as time goes on.

Checkups after treatment of non-Hodgkin lymphoma typically include careful physical exams, lab tests, and sometimes imaging tests such as CT scans. If the lymphoma recurs (comes back), it is usually while the child is still getting treatment or just after. It is unusual for childhood lymphoma to return if there are no signs of the disease within a year after treatment.

A benefit of follow-up care is that it gives you a chance to discuss questions and concerns that arise during and after your child's recovery. For example, almost any cancer treatment can have side effects. Some may last for a few weeks to several months, but others can be permanent. It is important to report any new symptoms to the doctor right away so that the cause can be found and treated, if needed.

It is also important to keep medical insurance. Even though no one wants to think of the cancer coming back, it is a possibility. If it happens, the last thing you want is to have to worry about paying for treatment.

Social, emotional, and other issues in treating non-Hodgkin lymphoma

Emotional issues may arise both during and after treatment. Factors such as the child’s age at diagnosis and the extent of treatment may play a role here.

During treatment, families tend to focus on the daily aspects of getting through it and beating the lymphoma. Some common family concerns include financial stresses, transportation to the cancer center, the possible loss of a job, and the need for home schooling. Many experts recommend that school-aged patients attend school as much as possible. This helps them maintain important social connections and gives them a chance to keep their friends informed about what is happening.

Friends can be a great source of support, but patients and parents should know that some people have misunderstandings and fears about cancer. Some cancer centers have a school re-entry program that can help in these situations. In this program, health educators visit the school and tell students about the diagnosis, treatment, and changes that the cancer patient may go through. They also answer any questions from teachers and classmates.

Centers that treat many children with lymphoma may have programs to introduce new patients to children or teens who have finished their treatment. This can give patients and their families an idea of what to expect during and after treatment, which is very important. Seeing another patient with lymphoma doing well after treatment is often helpful. Support groups also might be helpful.

During and after treatment, a number of emotional concerns may arise. Some of these may last a long time. They can include things like:

• Dealing with physical changes that result from the treatment
• Worries about the lymphoma returning or new health problems developing
• Feelings of resentment for having had lymphoma or having to go through treatment when others do not
• Concerns about being treated differently or discriminated against (by friends, classmates, coworkers, employers, etc.)
• Concerns about dating, marrying, and having a family later in life

No one would choose to have lymphoma, but for many childhood lymphoma survivors, the experience can eventually be positive, helping to establish strong self-values. Other survivors may have a harder time recovering, adjusting to life after cancer, and moving on. It is normal to have some anxiety or other emotional reactions after treatment, but feeling overly worried, depressed, or angry can affect many aspects of a young person’s growth. It can get in the way of relationships, school, work, and other aspects of life.

With support from family, friends, other survivors, mental health professionals, and others, many people who have survived cancer can thrive in spite of the challenges they’ve had to face. If needed, doctors and other members of the health care team can often recommend special support programs and services to help children after cancer treatment.