LFSA Adolescent & Young Adult Health Care Transition Resources
The process of moving your health care from pediatric to adult health care systems is called “transition”. Below are resources to help adolescents and young adults with Li-Fraumeni syndrome (LFS) transition their health care into the adult space.
If you’d like these resources tailored to your specific needs (plus other tips!), check out our LFSA AYA Health Care Transition quiz.
Start talking to your LFS provider about when, where, next steps and any on-site resources for transitioning your LFS care to an adult center. Below are general resources to support health care transition:
- GotTransition: https://www.gottransition.org/youth-and-young-adults/
- Adolescent Health Transition Project: https://depts.washington.edu/healthtr/
- MyChart proxy: https://www.mychart.org/Help/proxy
Resources to help you, your provider or others quickly understand 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 to help you, your provider or others understand more about and find a provider for LFS cancer screening:
- 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
- Where to get LFS care: https://www.lfsassociation.org/where-to-get-lfs-care/
Information on insurance and other financial topics:
- 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 and 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 that can help provide or answer questions about financial assistance:
- LFSA Financial concerns: https://www.lfsassociation.org/financial-concerns/
- Free service to help you access hospital charity care to pay medical bills: https://dollarfor.org/
- Other resources for people with cancer and survivors:
- Resources, help videos, and free financial navigators: https://triagecancer.org/
- Financial resources for families: https://familyreach.org/
- Financial assistance and practical help: https://www.cancerfac.org/
- Resource navigation: https://www.cancercare.org/
- Navigating legal challenges: https://thedrlc.org/cancer-justice/
Information on lifestyle behaviors linked to lower cancer risk and better overall health:
- Nutrition and exercise: https://www.lfsassociation.org/nutrition-and-exercise/
- Lifestyle, research, and survivor topics: https://www.lfsassociation.org/lifestyles-research-and-survivors/
- Diet and Physical Activity Guideline for Cancer Prevention: https://www.cancer.org/cancer/risk-prevention/diet-physical-activity/acs-guidelines-nutrition-physical-activity-cancer-prevention.html
Mental health struggles can include any of the following: feelings of distress, anxiety, depression or grief, difficulty meeting basic hygiene needs, not performing well at work/school, or isolating yourself.
Below are 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
Information on how LFS is inherited and paths to parenthood:
- LFS FAQs: https://www.lfsassociation.org/lfs-faqs/
- Reproductive concerns: https://www.lfsassociation.org/reproductive-concerns/
- Society for Assisted Reproductive Technology: https://www.sart.org/
- Reproductive Facts: https://www.reproductivefacts.org/?vs=1&_ga=2.186384233.1139303104.1606923204-1083074052.1606923204
- Oncofertility Consortium Resources for Patients: https://oncofertility.msu.edu/resources/for-patients/
- Preimplantation Genetic Testing (PGT): https://geneticsupportfoundation.org/pregnancy-genetics/
A genetic counselor/provider can explain the genetics and inheritance of LFS, arrange genetic testing for family members and discuss options if you want to have kids.
- LFSA Directory of Genetic Counselors: https://www.lfsassociation.org/wp-content/uploads/2024/05/LFSA_Genetic_Counselor_Directory_6320.pdf
- About Genetic Counselors (NSGC): https://www.aboutgeneticcounselors.com/
- Find a Genetic Counselor (NSGC): https://findageneticcounselor.nsgc.org/
- International Genetic Counselor directory: https://www.nsgc.org/About/International-Genetic-Counseling-Organization-Directory
Cancer treatment can sometimes impact fertility. There are steps you can take to protect your fertility and ability to have biological children in the future:
- Livestrong Fertility: https://livestrong.org/how-we-help/livestrong-fertility/
- Oncofertility Consortium: https://oncofertility.msu.edu/
- My Cancer Fertility: https://mycancerfertility.org/
- Oncofertility Consortium’s fertility preservation toolkit: https://www.savemyfertility.org
Resources for living well after a cancer diagnosis
- Children’s Oncology Group (COG) Survivorship Guidelines: https://childrensoncologygroup.org/survivorship/
- Passport for Care Survivorship Resources: https://cancersurvivor.passportforcare.org/en/survivorship-resources/
- Together by St. Jude Survivorship Care Plans: https://together.stjude.org/en-us/medical-care/navigating-health-care/survivorship-care-plans.html
