What is the Childhood Cancer Survivors Program?
A clinic for long-term survivors of childhood cancer, offered by the Riley Hospital for Children Hematology/Oncology at Indiana University Health. Currently only general oncology (not brain tumor or allogeneic transplant patients) are included in this service but may be in the future.
Why is there a need for long-term follow-up?
Between 75 and 80% of children diagnosed with cancer today are expected to survive their cancer. Approximately one in every thousand young adults is a survivor of childhood cancer, with more and more survivors each year. Our Childhood Cancer Survivors Program is designed to meet the unique needs of this growing population.
What needs do childhood cancer survivors have?
"Cure is not enough." Childhood cancer and its treatment can result in medical, psychological, and/or social problems months or even years after therapy has stopped. Unwanted effects of the disease and/or treatment are called late effects. Surveillance and early intervention for late effects is important in maintaining the good health of the survivor.
What factors influence my risk for late effects of cancer treatment?
There are several factors which affect your risk for having late effects. These include:
- Age you were diagnosed and treated
- Location and severity of your disease
- Location and amount of radiation
- Type and amount of chemotherapy you received
- Type and location of any surgery you had
- Complications from your treatment
What services does the Survivor Clinic offer?
- Complete summary of treatment for your personal records
- Education about your disease and your potential for late effects
- Screening for possible late effects of your cancer and your treatment by a nurse practitioner and a doctor who specializes in childhood cancer treatment - this evaluation might include labs and/or x-rays
- Psychosocial support - help with educational, occupational, and insurance needs
- Referral to specialists, if necessary
- Assistance with your transition to adult medical providers
What is contained in my treatment summary?
- Your diagnosis
- Your age and dates of diagnosis
- Your treating doctor and nurse practitioner
- A list of all the chemotherapy drugs you received, and the exact amounts of those which have late effects that are "dose-dependent"
- Radiation location and doses
- Relevant surgeries, dates, and names of surgeons
- Blood product exposure and dates; blood type
- Significant complications during treatment
- Special instructions based on all the above - this is your personalized risk assessment with surveillance recommendations
- General guidelines for good health
- Medical Resources - our address, phone and fax numbers
- List of other specialists and their addresses and phone numbers
- Ways to access resources; list of reliable internet resources
- Scholarship information
- Health Links handouts from the Children's Oncology Group specific to your treatment exposure and your risks
- Other printed resources specific to your disease and its treatment; for example, fertility information
- Printed information from other organizations that you might be interested in
When do I qualify for Survivor Clinic?
This is somewhat arbitary, as disease follow-up should gradually transition into late-effects follow-up. You are usually referred to the Survivor Program at the point in your care that we are no longer as focused on monitoring for disease recurrence as we are on prevention, surveillance, early detection, and management of late effects of the treatment. This differs according to your diagnosis and treatment, but it is usually at the point when you are being seen only once a year. A representative from the survivor clinic, however, will speak with you at the end of your treatment and periodically thereafter to begin discussing survivor issues.
What about transferring my care to a primary care doctor?
We encourage you to find a primary care internist in your community who can manage your routine care, immunizations, illness, etc. Many primary care physicians might not have experience treating a person who had the kind of childhood cancer you had, so it is important not only for us to communicate with them, but also for you to have the information you need to advocate for your future health. When you are seen in our Survivor Clinic, we will send a letter to your primary care doctor about your childhood cancer diagnosis, including our recommendations for your continued follow-up care. We also encourage you to have your doctor copy your treatment summary for their records. You may encourage them to contact us if questions or concerns arise regarding your care.
What about other medical providers?
You should have regular dental and eye care. Always let these doctors know of your history of childhood cancer.
Riley at IU Health is a children's hospital and I'm now an adult. Can I still come to Survivor Clinic?
Yes! We are happy to see you to provide the services listed above, and even if you have not been seen for quite awhile, one visit is usually sufficient for you to get the information you need. We can refer you to specialists, if needed, and usually do this through your primary care physician.
Should I worry about late effects?
Many survivors experience no late effects of their disease or its treatment. Also, many late effects are mild and can be easily treated. In fact, research by Oeffinger and others (2000) shows that 89% of the survivors of childhood cancer they studied rated themselves to be in good health.
How can I make an appointment for Survivor Clinic?
Appointments will be scheduled in Riley Hematology/Oncology at IU Health MSA at Riley Outpatient Center on Wednesday mornings. We can also see you at other times, if you are unable to come on Wednesdays.
To make an appointment please contact us by phone or email.
Phone 317.944.2143 or 1.800.238.8399