Long-Term Follow-Up Clinical Care
Nearly 90 percent of children with cancer will survive into adulthood. However, 60 percent of the children, adolescents and young adults who have been cured of cancer may be affected for months or years by their disease or the treatment they received. Children’s Long-Term Follow-Up (LTFU) Clinic monitors cancer survivors for late effects of cancer and treatment, addresses any problems that may occur and provides recommendations for future screening and follow-up to manage health risks. This information can then be shared with care providers, including primary care or other specialists.
Our goal is to keep survivors of cancer healthy and to educate them about their health risks. Children’s oncologists recommend at least one visit per year to the clinic after their treatment is complete.
Any survivor of childhood cancer, regardless of age or where they were treated during childhood, is encouraged to visit annually for a minimum of 10 years after completing treatment.
About the LTFU Clinic
Who is eligible to be seen in the clinic?
If you are a cancer survivor who is at least five years from diagnosis and/or two years from the end of therapy, you are encouraged to be seen in the clinic annually.
How do I schedule an appointment?
Letters are sent to all patients and families who are eligible to be seen in the clinic. An appointment should be scheduled with the clinic’s nurse practitioner or physician. LTFU appointments take at least one hour, possibly longer depending on tests needed. After the appointment is scheduled, a questionnaire is sent asking for information on the patient’s current medical and psychosocial health. Please bring the completed questionnaire to the appointment.
What should I expect at the visit?
Our goal is to provide information related to your child’s diagnoses and answer any questions you or your child may have. Patients are encouraged to make appointments annually to discuss any new issues. Referrals to other specialties are made as needed. Individual needs are discussed at the visit or can be reviewed before the visit if a completed questionnaire is returned before the visit. This may allow specialty appointments to be scheduled on the same day as the LTFU appointment. The following information is reviewed during the LTFU Clinic visit:
- Review cancer diagnosis and treatment
- Review medical history, hospitalizations and complications during treatment, and recommendations for preventive and ongoing care
- Routine physical exam and review of lab work and other tests.
- Answers to questions about cancer and its treatment, plus explanation of any special risks from treatment.
- Review of each chemotherapy drug and dosage, including potential side effects and indications for monitoring and/or treating.
- Information about health risk behaviors related to treatment (i.e., anthracycline and lifting weights, binge drinking and smoking)
- Fertility assessment and resources
- Self-breast or testicular exam instruction
- Advice and assistance with psychosocial, insurance or financial concerns
- Advice and assistance with school or job concerns
- Information about current or ongoing research studies that test new treatments for late effects
- Optimal health recommendations for follow-up, including nutrition, exercise, sleep and healthy behavior
- Summary of the visit and any treatment recommendations
What happens after the visit?
A summary letter detailing the patient’s visit is available to the patient/family on MyChildrens, and is sent to the primary care provider and any involved specialty providers.
If you are a family member looking for a Children’s hematologist or oncologist or wanting to schedule an appointment, please call our clinic at Children’s – Minneapolis at 612-813-5940.
If you are a health professional looking for consultation or referral information, please call Children’s Physician Access at 1-866-755-2121 (toll-free) and ask for the on-call hematologist/oncologist.
Why Choose Children’s?
Experts work together for your child. Our multidisciplinary team diagnoses and treats late effects from the treatment of cancer, such as compromised lung function, heart problems, growth issues, impaired fertility, joint problems and learning disabilities. Your child’s care begins with the cancer and blood disorders team, and if necessary, involves more extensive services within Children’s Minnesota such as pediatric gynecologists, neuropsychologists, endocrinologists, and cardiologists who are experienced in treating childhood cancer survivors.
Access to the latest information about cancer survivorship. Children’s participates in the Childhood Cancer Survivor Study, which follows more than 14,000 survivors to identify late effects and inform care guidelines. These guidelines are intended to increase a survivor’s quality of life and decrease the high costs of healthcare for pediatric cancer survivors that may be related to complications from treatment.
Such guidelines can also:
- Promote healthy lifestyles
- Provide ongoing monitoring of your child’s health status over time
- Help identify late effects early on
- Provide timely intervention for late effects
Other resources through the LTFU clinic
Passport for Care® Survivor
Passport for Care is an application developed by the Children’s Oncology Group (COG) and Texas Children’s Cancer Center to address the healthcare information needs of children and young adult survivors of cancer in the U.S. It’s used by over 130 childhood cancer centers around the country including Children’s Minnesota.
The Passport for Care (PFC) Survivor is an online resource for survivors of childhood cancer. After your first follow up visit and completing the online enrollment for Passport for Care, you can– anytime, anywhere – securely access:
- Your cancer treatment summary
- Your follow-up care recommendations
- Tips on how to best look for any late effects of your treatment
- Printable summary and follow up guide for any of your doctors
- Health links to help you learn about potential late effects of your treatment
Resources on the web