For Patients, Cancer Treatment May Have Lasting Emotional Effects

As a childhood cancer patient, you look forward to the day cancer treatment is over.

But it is hard to predict how the experience will affect you emotionally. Many patients do not realize they are having emotional effects until after treatment ends.

Life will not be exactly the same as it was before cancer. As a childhood cancer patient, you have gone through experiences that are rare for people the same age.

How cancer may change things

In some ways, you will be more mature. You may think what your friends worry about is trivial. Dealing with cancer clarifies what is truly important in life.

In other situations, you may have some catching up to do. You may have missed some important milestones such as making the transition to middle school, learning to drive, or how to hang out with friends your own age. While you’ve been in cancer treatment, your friends at school have moved on with their lives. You may have some difficulty connecting. Give it some time.

Look for ways to get involved in social activities with peers:

• Join clubs that interest you at school.
• Look for opportunities to volunteer in your community.
• Get involved in pastimes that keep you active such as sports, band, outdoor recreation, and dance.

Relationship with parents

Being a cancer patient may have caused you to be more dependent on your parents than you would have been otherwise.

Parents may become overprotective.

These types of situations may cause friction as you seek to become more independent.

Talking with others about cancer

You may not know how you will want to talk about your cancer treatment with other people in your life.

• Some cancer patients want to be open about their experiences as a cancer patient.
• Others do not want to think or talk about cancer anymore.
• Many young people fall somewhere in between.

Childhood cancer survivors often say they do not want to be defined by their disease. They don’t want to be the “cancer kid.” They want to be known for who they are outside cancer.

Take charge of emotional health

You can expect to experience a wide range of emotions. It is normal to feel:

• Excitement over treatment ending
• Nervousness about the future
• Sadness over not seeing your care team and friends at the hospital regularly
• Worry that you may relapse
• Survivor’s guilt – guilt that you survived when other patients did not
• Concern over physical appearance
• Awkwardness in social situations

Reach out for help

As you approach the end of treatment and make the transition back home, talk about your feelings with your care team. Psychologists, social workers, child life specialists, and chaplains can be helpful. They can also refer you to support groups where you can talk to other patients and survivors about what you’re going through.

At times, worry and stress can lead to emotional problems. Symptoms to be concerned about include:

• Low mood that lasts several days
• Feelings of sadness that do not go away
• Problems with sleep
• Constant worry
• Less interest in activities

If you are experiencing any of these symptoms, reach out to your care teams — both at home and at the pediatric center where you received treatment.

Every center is different, but you may be able to continue to receive counseling through the pediatric center even after you have finished cancer treatments.

Your care team at home can recommend professionals in your community. It is a good idea to check with your insurance company to make sure the counseling is covered by insurance. The social work department at your pediatric center can assist you and help locate free or low-cost programs if your insurance does not cover mental health services.

School provides normalcy

Returning to school after treatment is one of the most important milestones for childhood cancer patients. Many patients can attend school while still in treatment. They are encouraged to return to school as soon as they are medically able.

But the school experience may be different for you after you have been through cancer treatment. You may notice differences in how you learn, think, and process information. These are called cognitive effects. Before returning to school it may be a good idea to have cognitive screening tests at the hospital to identify any areas of concern.

If you are having challenges, tell your parents and teachers. You and your parents can work with the school to design a learning plan that addresses your learning differences. These may include a 504 plan or Individualized Education Program.

Transition back to school gradually. Attending school all day, five days a week may not be possible at first. Many children and teens experience fatigue and weakness and cannot make it through a full day. Others may have immune system concerns and are not able to be in large groups of people. Others may have physical challenges that affect their mobility.

Often children and teens start back on a shortened schedule such as attending half-days or going to school a few days a week until they can return full time.

Take this transition one step at a time and ask for help when you need it.

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