After Rhabdomyosarcoma Treatment

During treatment for rhabdomyosarcoma (RMS), most patients and their families are focused on getting through treatment and beating the cancer. After treatment, the focus shifts to long-term effects of RMS and its treatment, as well as worries about the cancer coming back.

It is normal to want to put RMS and its treatment behind you and to get back to a life that does not revolve around cancer. But getting the right follow-up care offers you or your child the best chance for recovery and long-term survival.

Follow-up exams and tests

For several years after treatment, it is important to have regular follow-up exams with the cancer care team. The doctors will watch for signs of cancer and side effects of treatment. Doctor visits will be more frequent at first, but the time between visits may get longer as time goes on.

Checkups after treatment of RMS include careful physical exams, lab tests, and sometimes imaging tests such as computed tomography (CT), magnetic resonance imaging (MRI), or positron emission tomography (PET) scans. If the RMS comes back (recurs), it is usually within the first few years after treatment. If the tumor comes back, or if it does not respond to treatment, your doctors will discuss with you the various treatment options available.

As time goes by, the risk of recurrence goes down. However, routine doctor visits are still important because some side effects of treatment might not show up until years later (see below). A benefit of follow-up care is that it gives you a chance to discuss any questions or concerns that arise during and after recovery from cancer treatment.

Ask the cancer care team for a survivorship care plan

Talk with the treatment team about developing a survivorship care plan. This plan might include:

• A summary of the diagnosis, tests done, and treatment given
• A suggested schedule for follow-up exams and tests
• A schedule for other tests that might be needed in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from RMS or its treatment
• A list of possible late or long-term side effects from treatment, including what to watch for and when to contact the doctor

Keeping records of health insurance and medical care

As much as you might want to put the experience behind you once treatment is completed, it is important to keep good records of your (child’s) medical care during this time. Eventually, your child will grow up, be on their own, and have new doctors. Gathering these details soon after treatment may be easier than trying to get them at some point in the future.

Ask the cancer care team where and how to get this information. Learn more in Keeping Copies of Important Medical Records.

It is also important to keep health insurance coverage. Tests and doctor visits can cost a lot, and even though no one wants to think of cancer coming back, this could happen.

Late and long-term effects of treatment

Treatment for RMS might affect a person’s health later in life. Young people are especially at risk for possible late effects of their treatment. This risk depends on many factors, such as the size and location of the cancer, the treatments received, doses of cancer treatment, and the person’s age when they were treated.

Physical health after cancer treatment

The long-term effects of surgery depend on the location and extent of the cancer. Some operations leave just a scar, while more extensive operations can lead to changes in appearance or in how some parts of the body function, which might require physical therapy.

Some chemotherapy drugs can damage cells in the ovaries or testicles, which might affect a person’s ability to have their own children. If fertility preservation was not an option before treatment, there may be ways to help preserve fertility even after treatment. For more information, see Preserving Fertility in Children and Teens With Cancer.

The long-term side effects of radiation therapy can sometimes be serious, especially for young children. Parts of the body that get radiation might not grow as well. Depending on the area getting radiation, this might cause problems such as curving of the spine, a shortened arm or leg, limited motion of a joint, scarring of soft tissue, or poor development of the facial bones. Other problems linked to radiation can include scarring of the lungs when radiation to the chest is needed, poor vision when an eye is exposed, and problems with sexual function when giving radiation to the pelvis. Radiation to the brain can lead to learning problems or other issues, so doctors do their best to avoid this when possible. Because many radiation side effects are specific to the age of the person being treated and the treatment area, it is best to talk to your cancer care team about the side effects that should be watched for.

Children who get chemotherapy and/or radiation therapy also have an increased risk of a second cancer later in life. These include bone cancer, leukemia, or other soft tissue tumors. These second cancers affect only some RMS survivors, and these are people who, unfortunately, would not have survived without these treatments.

Social and emotional health after cancer treatment

Most often, RMS develops during the childhood or teenage years, a very complex time in a person’s life. RMS and its treatment can have a profound effect on how a person looks and how they view themselves and their body. It can also affect how they do some everyday tasks, including certain school, work, or recreational activities. Some people may also have a hard time coping with being away from school, friends and activities they enjoyed before cancer. These impacts are often greatest during the first year of treatment, but they can be long-lasting in some people.

Self-esteem, self-image, and social development can be addressed with support and encouragement. Many pediatric cancer centers have special support programs and services to help children with cancer and their families during treatment and for many years after treatment ends. Reach out to your cancer center for help when needed. This may include services like counseling, social events, or support groups.

It can be normal to have some anxiety or other emotions about your or your child's cancer and its treatment, but feeling overly worried, depressed, or angry can affect your or your child's health. 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 despite the challenges they have had to face.

Long-term follow-up guidelines

To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines are used by your doctor to create a Survivorship Care Plan specific to your (child’s) treatment. They can help you know what to watch for, what screening tests should be done to look for problems, and how late effects can be treated.

To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free at the COG website: www.survivorshipguidelines.org. The guidelines are written for health care professionals, but patient education on some late effects of treatment is available (as “Health Links”) on the site as well.

For more on the possible long-term effects of treatment, see Late and Long-term Effects of Childhood Cancer Treatment.