Long-Term Follow-Up

Adolescent survivorship issues

Q: Do adolescents have special needs after transplant?

A: Having cancer or another life-threatening disease that requires a blood or marrow transplant is difficult at any age.

For adolescents, however, the physical, psychological and social impacts occur at a time when many other changes are taking place in their lives and bodies. Chemotherapy, radiation, immunosuppressive therapy, or graft-vs.-host disease during childhood or adolescence can affect growth and development, making teen survivors physically different from their peers and increasing the risk of medical problems in adulthood.

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Q: How are the lives of adolescent transplant survivors different from those of their peers?

A: Even after successful treatment, the effects of transplant can completely disrupt the normal experience of teenage life.

Even if the transplant was during childhood, physical differences and disabilities, increased dependence on parents, and isolation from friends can set the teen transplant survivor apart from their peer group and add challenges that aren’t normally faced at this time of life.

Interference with growth and development, hormones and metabolism create additional problems at this age when the body is or would normally be rapidly changing.

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Q: What kind of special health care needs do I have as an adolescent transplant survivor?

A: Late adolescence and young adulthood is frequently a time when people only go to see a doctor if they are sick.

However, as a transplant survivor, even years after a transplant, it is important to continue to be seen on an annual basis by a health care provider.

It is also important for you to know what your cancer treatment history was. You can ask your transplant clinic for a summary of your treatment if you don’t already have one.

Be proactive with your health and making sure that you eat a healthy diet, exercise, and that you know what kinds of screening tests you might need—and whether they should start at a younger age than for the general public, such as tests for breast, cervical and other cancers (depending on the type of treatment that you received).

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Q: How are adolescents affected by transplants differently from adults or small children?

A: Psychologically and socially, the teen years are already a challenge.  Peer acceptance, body image, becoming more independent, and a feeling that you can do anything are important at this point of life.  A teen transplant survivor has often lost all of these things.

They may have long-term fatigue, scars, hair loss, and weight gain or loss. Instead of being out with friends, they may have been away for months of treatment and had limited public contact even longer while immunosuppressed.

They may have become more dependent on their parents just as their friends are becoming more independent. Their view of the future may be full of uncertainty and fears about health, relationships and careers.

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Q: What can parents do to help their adolescent deal with post-transplant issues?

A: Talk to your teen’s health care providers and be sure they can address the special needs of survivors in this age group. If you have access to providers who specialize in adolescent survivors, you may want to include them in your teen’s care.

Be aware that your teen may want privacy to speak with their providers about body image, sexuality or other issues that are especially important at this age.

Provide resources to help your teen deal with their experience as a cancer and/or transplant survivor.

As much as possible, allow your teen to have the normal experiences of being a teenager in addition to being a transplant survivor. Help your teen develop healthy lifestyle habits to reduce the risk of late effects.

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Q: Are there resources to help teens connect with peers who understand their experience?

A: Adolescent and young adult (AYA) cancer and transplant survivors have been instrumental in forming resource and networking groups to provide support for people like themselves.

The websites of groups like "Planet Cancer" and "I’m too Young for This!" provide a wealth of information and opportunities for social networking for AYA cancer survivors.

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Q: What if I have trouble with school work or need help paying for college?

A: Each state has special programs for students with learning disabilities or health issues that have put them behind in their school work.

Your school likely has a staff person or department dedicated to evaluating and helping students with special needs. A number of organizations have scholarship funds to help cancer survivors, transplant recipients or those with a specific disease pay for higher education.

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