Late Effects Program

Childhood cancer survival is one of the greatest success stories of medicine in recent years. Since the 1970’s, the cure rate and number of survivors has grown dramatically. Currently, the size of the population surviving childhood cancer is at least 270,000 with almost 80% of children diagnosed before the age of 21 surviving at least 5 years after diagnosis. (National Cancer Institute, 2008). As the number of survivors of childhood cancer continues to grow, so does knowledge of the late effects of cancer treatment.

What is a late effect?

A late effect is a chronic or late-occurring medical condition that persists or develops because of the cancer or its treatment.

More than two-thirds of young adult survivors of childhood cancer eventually experience at least one “late effect,” with some survivors experiencing more. Late effects can occur in any organ or system of the body and vary from person to person.

• Some late effects may be serious or life threatening.
• They can be influenced by the original cancer diagnosis, age at diagnosis, gender, treatment, family history, aging process, and overall health.
• Some late effects will be visible, such as amputation of a limb or removal of an eye. Some will require testing in order to diagnose.
• Late effects may occur anytime following treatment and throughout adulthood.
• Late effects can often be prevented, controlled, or improved if anticipated and detected early.

The Late Effects Clinic at Saint Louis Children’s Hospital and Washington University School of Medicine

An awareness of the late side effects of cancer therapy is essential for cancer survivors as well as their friends, family, and caregivers. Regular, long-term medical follow up as well as social support is as important as treating the cancer. At Washington University School of Medicine and Saint Louis Children’s Hospital, the transition to long-term follow up will usually occur about two years after treatment is completed.

Specialists and Health Professionals who participate in the Late Effects Clinic include:

• An oncologist and nurse practitioner who specialize in late effects
• A psychologist who addresses psychological and adjustment issues
• A social worker who provides individualized support, both financial and emotional, relating to survivorship
• A chaplain who provides spiritual counseling
• A school liaison who evaluates educational needs and helps establish a link with the patient’s school
• An occupational therapist who assesses if late effects may be interfering with a patient’s regular daily activities
• A physical therapist who evaluates for problems with movement, strength, or stamina
• A registered dietitian who discusses how to contribute to overall health through diet

A visit to The Late Effects Clinic includes:

• A written summary of your treatment
• Comprehensive screenings
• Identification of late effects
• Prevention and wellness education
• Referrals to other medical specialties as needed
• Recommendations of resources within your community

Your Cancer Treatment Summary:

The Children’s Oncology Group Long-Term Follow up Guidelines (available at curesearch.org) recommend the following: “When you graduate to long-term follow up, it is important that you get a record of the cancer treatment that you received.”

• This record, known as your Treatment Summary, will contain the following information about your treatment:
• Name and total dose of each chemotherapy drug
• Location and dose of any radiation
• Type of surgery, if any
• Dates of diagnosis, completion of all treatment, and any relapse
• Date and type of bone marrow/stem cell transplant, if any

Based on this summary, appropriate testing and follow up care can be planned for each survivor.

You are your best advocate! We are here to help you find your way in this complex world of healthcare. Our goal is to meet the unique needs of childhood cancer survivors through prevention and wellness education.

Tips to Leading a Healthy Life:

• Eat a healthy diet
• Exercise regularly
• Choose not to smoke
• Avoid risky behavior
• For women: do monthly breast self exams and see your gynecologist yearly
• For men: do monthly testicular exams
• Avoid drugs and alcohol
• See your dentist every six months
• See your primary care physician once a year
• Limit your sun exposure and always use sunscreen
• Care for your mental health
• Maintain up-to-date medical insurance
• Know what resources are available to you and use them

The Team

• Marnie Hauff, School Liaison
• Robert Hayashi, MD, Medical Director
• Jennifer Henry, Late Effects Coordinator
• Caroline Mohrman, PNP, Late Effects Program
• Jill Isenberg, PhD, Neuropsychologist
• Lisa Mottola, MSW, Social Worker
• April Nesin, PhD, Clinical Psychologist
• Tara Todd, RD, LD, Registered Dietitian
• Amy Westfall, OTD, OTR/L, Occupational Therapist
• Carol Wiedner, RN, Clinic Nurse
• Brenda Witte, PT, physical therapist

Links and Resources

American Cancer Society
http://www.cancer.org/
Provides support for survivors through an online community, as well as tips on how to be healthy after treatment.

Beyond the Cure
http://www.beyondthecure.org/
Beyond the Cure is a web site created by the National Children’s Cancer Society (NCCS) to ensure that childhood cancer survivors and their families have access to survivorship information.

CureSearch Children’s Oncology Group (COG)
http://www.curesearch.org/
You can access COG’s long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers on this site.