February 26, 2013

Survivorship Road Maps

Survivorship Road Maps

Why do I need one?

Survivorship Road Maps provide you and each of your healthcare providers with information necessary to determine your risk for potential late effects of your cancer treatment and a plan for the lifelong follow up your medical history requires to maximize your health and wellbeing and minimize the impact of late effects across time.

Why is lifelong follow up necessary?

The younger you are at diagnosis, the more important lifelong follow up becomes as we, survivors, carry risk factors related to our treatment history in addition to those risk factors that come with the normal aging process.

Adults survivors of childhood cancers like myself  are especially unique as our parents shouldered primary responsibility for our healthcare; however, as we emerge into young adulthood, we must lay hold of the baton as we live out our cures.

What information is included in a Survivorship Road Map?

  • Treatment Center Information:

  • Name of the Treatment Center

  • Name of your primary oncologist

  • Name of your surgeon[s],  radiation oncologist, and other specialists involved in your care, if applicable

             *Provider addresses and phone numbers are helpful, if available

  • Contact Name [and] Phone Number of a Family Member who will always know how to contact you

Disease Information

  • Surgical History

  • Date/Age at Diagnosis

  • Diagnosis and Extent of Disease

  • Age at Completion of Treatment

Pre-treatment Testing and Results:

  • Bone Marrow: Aspirates and Biopsies

  • Spinal Fluid Analysis

  • CT Scans: Head, Chest, Abdominal, and Pelvic

  • MRI[s]: Head, Chest, Abdominal, and Pelvic

Treatment-Related Information:

  • Surgery: if yes, then why, when, and where

  • Radiation: type of radiation, extent of the radiation field, and total dose received

  • Chemotherapy: the specific names and doses of each medication used, especially the cumulative dose of any anthracycline received

Treatment-Related Complications

  • Summary of any significant complications during the course of therapy

Survivors, WE are our BEST and MOST EFFECTIVE Advocates: educate and equip yourself, then liveWELL.

Helpful Links for YOU and your Healthcare Providers: 

Children’s Oncology Survivorship Guidelines

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