Living as an Osteosarcoma Survivor

During treatment for osteosarcoma, the main concerns for most people are the daily aspects of just getting through treatment and beating the cancer. After treatment, the concerns tend to shift toward the long-term effects of the cancer and its treatment, as well as worries about the cancer coming back. 

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

Follow-up care

After treatment, it’s very important to go to all follow-up appointments. During these visits, doctors will ask about symptoms and do physical exams, and might order blood tests or imaging tests such as MRI, CT scans or x-rays. Follow-up visits are needed to check for cancer recurrence or spread, as well as possible side effects of treatment. This is a good time for you to ask the health care team any questions and to discuss any concerns you might have.

You or your child will probably see the oncologist and the orthopedic surgeon and get imaging tests every few months during the first couple of years after treatment, and less often after that if there are no issues.

Physical therapy and rehabilitation are typically a very important part of recovery after treatment for osteosarcoma, and your doctors and other health providers will continue to monitor your (child’s) progress as time goes on.

Some chemotherapy drugs can cause problems with hearing or heart damage. People who get these drugs may also have tests to check hearing or heart function.

Almost any cancer treatment can have side effects. Some may last for only a short time, but others can last longer or might not show up until months or even years later. For example, in younger people, treatment might affect fertility (the ability to have children) later in life. It's important to talk to the cancer care team to learn about what to look for, and to tell them about any symptoms or side effects so they can help manage them.

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 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 the cancer 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 health insurance and copies of medical records

As much as you may want to put the experience behind you once treatment is completed, it’s also very important to keep good records of your (child’s) medical care during this time. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. This can be very helpful later on if you (or your child) change doctors. Learn more about this in Keeping Copies of Important Medical Records.

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

Late and long-term effects of treatment

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

For example, the after-effects of surgery can range from small scars to the loss of a limb, which would require both physical rehabilitation and emotional adjustment.

Other late effects of treatment can include:

• Heart or lung problems (due to certain chemo drugs or radiation therapy to the chest)
• Loss of hearing (due to certain chemo drugs)
• Slowed growth and development (in the bones or overall)
• Changes in sexual development and ability to have children
• Learning problems in younger children
• Development of another cancer

Other possible complications might come up as well. Your child’s doctor should carefully review any possible problems with you before starting treatment. For more information, see Late Effects of Childhood Cancer Treatment.

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 can help you know what to watch for, what types of screening tests should be done to look for problems, and how late effects are treated.

It’s very important to discuss possible long-term complications with your child’s health care team, and to make sure there is a plan in place to watch for these problems and treat them, if needed. 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. Patient versions of some of the guidelines are available (as “Health Links”) on the site as well, but we urge you to discuss them with a doctor.

Social and emotional issues

Most osteosarcomas develop during the teenage or young adult years, a very sensitive time in a person’s life. Osteosarcoma 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. These effects are often greatest during the first year of treatment, but they can be long-lasting in some people. It’s important that the treating center assess the family situation as soon as possible, so that any areas of concern can be addressed.

These types of issues can often be addressed with support and encouragement. Doctors and other members of the health care team can also often recommend special support programs and services to help children, teens, and young adults after cancer treatment. For more information, see When Your Child's Treatment Ends.

No one chooses to have osteosarcoma, but for many people, the experience can eventually be positive, helping to establish strong self-values. Other people 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 parts 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 after cancer treatment.

Although osteosarcoma and its treatment can have social and emotional effects on children and teens (and their families), adults with this disease face many of the same challenges, and are also encouraged to take advantage of the cancer center’s physical therapy, occupational therapy, and counseling services.