Resources

• See below for an example of what you could say to your providers. If having it written out is helpful, consider saving it in your phone so you can easily pull it up at medical appointments.
  • Example: I have a history of [insert any cancer history]. I have a genetic condition called Li-Fraumeni syndrome, which increases my risk for brain, muscle, bone, [female breast] and other cancers. I need screening for these cancers. I can pass LFS onto my children.
• These other resources may be helpful to help your provider or others quickly understand a bit more about LFS.
  • LFS Fact Sheet for medical providers: https://www.lfsassociation.org/wp-content/uploads/2024/01/LFS-Fact-Sheet-for-Medical-Providers.pdf
  • Patient fact sheet: https://www.lfsassociation.org/wp-content/uploads/2024/04/LFS-Fact-Sheet.pdf

Resources

• Talk to your LFS provider about what tests you should get, what age to start, and how often to get them done. The cancer screening recommendations may be modified for you, depending on your personal and family history
• LFSA Resources:
  • Treatment and Preventative Screening:  https://www.lfsassociation.org/treatment-and-preventative-screening/
  • Fact Sheet for medical providers:  https://www.lfsassociation.org/wp-content/uploads/2024/01/LFS-Fact-Sheet-for-Medical-Providers.pdf

Resources

• If you are seeing a pediatric provider, you may want to start making a plan for transition to adult care. More on this later in the quiz!
• If you are seeing a provider who is not familiar with LFS, it can be beneficial to find a provider with specific expertise in LFS. You can switch to a specialist or the LFS specialist can work with your personal provider. You can find information below to see if there are any LFS specialists or centers in your area:
  • LFSA Information on Where to get care: https://www.lfsassociation.org/where-to-get-lfs-care/
• If you are seeing a local provider who is not familiar with LFS, you can give them the LFS Fact Sheet for medical providers: https://www.lfsassociation.org/wp-content/uploads/2024/01/LFS-Fact-Sheet-for-Medical-Providers.pdf

Resources

• If you haven’t started yet or aren’t sure about next steps, bring this up with your LFS provider at your next visit. Some things you can ask about are:
  • When you should plan to transition care and options for adult LFS providers to which you can transition care.
  • If there are any resources at your current hospital or medical center to help with transition of care.
• One important step you can take is making sure you have access to your patient portal where you can view your health care information, clinic notes and test results.
  • You can ask your provider or contact registration at your hospital to get access.
  • Ask about how and when you can share access between you and your parent/guardian(s), as rules are different across hospitals.
  • MyChart Proxy:  https://www.mychart.org/Help/proxy
• Keep in mind your future plans, such as going to college or getting a job. If your plans require moving, you may need to find an LFS provider in another city or state. If your insurance is going to change, this is also something to consider when changing providers to find out if they accept your new insurance.
• Make sure to take the Got Transition quiz and review the information and resources available at gottransition.org!
  • GotTransition: https://www.gottransition.org/youth-and-young-adults/
  • Adolescent Health Transition Project: https://depts.washington.edu/healthtr/

Resources

The following resources include insurance and other financial information:

• LFSA Insurance basics: https://www.lfsassociation.org/insurance-basics-for-individuals-with-li%e2%80%91fraumeni-syndrome-lfs/
• LFSA Financial concerns:  https://www.lfsassociation.org/financial-concerns/
• Other resources for cancer patients/survivors:
  • Track Care Costs: https://www.cancer.gov/about-cancer/managing-care/track-care-costs
  • Financial and Insurance Matters: https://www.cancer.org/cancer/financial-insurance-matters.html
  • Triage Cancer: https://triagecancer.org/cancer-resources-and-educational-information

Resources

The following resources can help provide financial assistance or answer questions about financial assistance

• Resources, help videos, and free financial navigators: https://triagecancer.org/
• Financial resources for families experiencing cancer: https://familyreach.org/
• Free counseling to help you access hospital charity care to pay medical bills: https://dollarfor.org/
• Resource navigation for people with cancer: https://www.cancercare.org/
• Financial assistance and practical help for people with cancer: https://www.cancerfac.org/
• Navigating legal challenges due to cancer: https://thedrlc.org/cancer-justice/

Resources

The following resources include LFSA mental health content plus general mental health support and providers:

• Mental health providers quick reference: https://www.lfsassociation.org/wp-content/uploads/2024/01/Quick-Reference-Resource-for-Mental-Health-Providers.pdf
• LFSA Webinar: a Path Towards Resilience & Cultivating Greater Happiness: https://youtu.be/QU7DYDD4JwU
• Substance Abuse and Mental Health Services Administration: https://www.samhsa.gov
• Find a Psychologist: https://findapsychologist.org/
• Suicidal Crisis Support: https://www.iasp.info/suicidalthoughts/
• Find help and treatment for mental health: https://www.samhsa.gov/find-help