Your Survivorship Journey
Effective and sustainable survivorship care is critical for the long-term health of every survivor of pediatric cancer. With the right long-term care plan, you can ensure that any doctors you see in the future will be well-briefed on your past.
This section will teach you about Survivorship Care Plans, follow-up care guidelines, and transitioning your care from pediatric oncology to survivorship and adult primary care.
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What is a Survivorship Clinic?
All cancer survivors should be receiving annual follow-up visits for management of their long-term survivorship and late effects. Long-term follow-up visits should include a full review of the survivor’s overall health and specific tests based on the survivor’s cancer, treatment, and side effects.
All cancer survivors should be receiving annual follow-up visits for management of their long-term survivorship and late effects. Long-term follow-up visits should include a full review of the survivor’s overall health and specific tests based on the survivor’s cancer, treatment, and side effects.
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Find a COG-affiliated late effects clinic near you.
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Treatment Summary
As you move from active treatment to general care, you’ll need a record of your treatment to pass along to other physicians.
As you move from active treatment to general care, you’ll need a record of your treatment to pass along to other physicians.
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Survivorship Care Plan
In a summer 2023 survey by Children’s Cancer Cause, over half of survivors report that they don't have a Survivorship Care Plan or have "lost track of it."
In a summer 2023 survey by Children’s Cancer Cause, over half of survivors report that they don't have a Survivorship Care Plan or have "lost track of it."
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COG Survivorship Guidelines
The format and depth of Survivorship Care Plans vary, depending on the institution, type of disease and treatment regimen. All of them, however, are based on the current scientific knowledge referenced by the Children’s Oncology Group and their long-term follow-up guidelines.
The format and depth of Survivorship Care Plans vary, depending on the institution, type of disease and treatment regimen. All of them, however, are based on the current scientific knowledge referenced by the Children’s Oncology Group and their long-term follow-up guidelines.
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Electronic Tools
Carrying around a stack of paper and asking different medical practices to input the data into their systems isn’t really convenient or practical for anyone. Fortunately there are a couple of alternatives to make this process simple. Web-based resources like Passport for Care and SurvivorLink™ can help clinicians and survivors keep track of treatment records and survivorship plans.
Carrying around a stack of paper and asking different medical practices to input the data into their systems isn’t really convenient or practical for anyone. Fortunately there are a couple of alternatives to make this process simple. Web-based resources like Passport for Care and SurvivorLink™ can help clinicians and survivors keep track of treatment records and survivorship plans.
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Communicating with healthcare providers
Beyond the long-term care plan are other steps you can take to ensure a smooth transition from your pediatric cancer team to a medical practitioner of adult care. Step one is good communication.
Beyond the long-term care plan are other steps you can take to ensure a smooth transition from your pediatric cancer team to a medical practitioner of adult care. Step one is good communication.
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Turning 18
Turning 18 may not make you feel any different, but legally, this means you are an adult. Find out what this means for your healthcare.
Turning 18 may not make you feel any different, but legally, this means you are an adult. Find out what this means for your healthcare.
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Transition Readiness
Are you ready to transition your care? Got Transition provides a checklist for you to go over with your care team (either pediatric or adult) to assess gaps in self-care knowledge and identify issues that need to be addressed.
Are you ready to transition your care? Got Transition provides a checklist for you to go over with your care team (either pediatric or adult) to assess gaps in self-care knowledge and identify issues that need to be addressed.
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Health Insurance
Maintaining health insurance is especially important for cancer survivors, since you need to guard against your health and wellness more than most people. It's especially important that survivors have health insurance coverage that is continuous (no lapses in coverage) regardless of changes in your age, school, or job situation.
Maintaining health insurance is especially important for cancer survivors, since you need to guard against your health and wellness more than most people. It's especially important that survivors have health insurance coverage that is continuous (no lapses in coverage) regardless of changes in your age, school, or job situation.
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- Dr. Greg Aune of UT Health San Antonio
“As patients age, we know their risk increases.
As patients get further away from completion of therapy, the rates of follow-up and survivorship program decline. And so, if you think about what happens there: These health problems are not necessarily within the first 5-10 years of completing therapy. They’re more likely - in the childhood cancer population - to occur 20-30 years later and beyond. So right as patients are beginning to have an increased risk of health complications, that’s about the point where their follow-up drops off.”
Explore more:
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As you’ve no doubt heard from your care team, cancer treatment can have long-lasting late effects. This course helps you be mindful of your physical and emotional health.
Empower yourself with knowledge about your risks for long-term late effects, so you can take proactive steps to catch any problems early on.
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This section focuses on the logistical building blocks of productive adulthood: post-secondary education, employment, disability rights, insurance access, and finances.
Take this course to help think through your career options, know your rights, and discover new resources.
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In addition to the educational courses for survivors, Children’s Cancer Cause supports a wide range of additional programs and policies that aim to address the medical and psychosocial care needs of pediatric cancer survivors:
The information provided in these courses and throughout this site is intended for educational purposes. It does not replace medical advice by a healthcare professional.