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Survivorship Care Plans

Reviewed by: Kathryn Tumelty, MSN, FNP-C, AOCNP
Reviewed by: Patricia A. Ganz, MD

Updated September 27, 2010

When you finish your initial treatment, you may be overwhelmed with questions about your future health. You may feel worried that you aren’t seeing your doctors and nurses as often as before, and you may be unsure how to move forward with your care.

Navigate the years after treatment using a post-treatment care plan (commonly known as a survivorship care plan), a comprehensive, written report about your treatment with recommendations for follow-up care and maintaining your health.

The Basics of Survivorship Care Plans

A post-treatment care plan is a written document that you keep in your possession. You should take it to your appointments with your primary care doctor, gynecologist, oncology team and other specialists.

Survivorship care plans help you keep all of your information in one place, and they help guide your providers if you develop health issues later in life that could be related to cancer treatment. You also have a record of your treatment if your physician leaves, if you move or your records get destroyed.

As you and your doctor put together your plan, include information about:

  • Your final pathology report from after your surgery, including the cancer stage and characteristics of the tumor (ER, PR and HER2 status)
  • Treatments and doses
  • Problems with treatment and side effects
  • Medicines you took to manage side effects
  • Possible long-term side effects
  • A schedule for future follow-up tests and appointments
  • Recommended screening and surveillance tests for breast and other cancers
  • Ways to cope with ongoing emotional concerns related to breast cancer
  • General health and wellness recommendations like diet and exercise
  • Suggestions for the future such as genetic testing or reconstruction

A post-treatment care plan is a living document that grows over time as your health changes, so it must include recommendations for future care. Among the issues your doctor may explore with you are weight, diet and alcohol consumption, which could impact your overall health and risk for recurrence.

Getting Started

When you are ready, ask your healthcare provider to help you create a plan. You may need to gather your medical records from your other doctors. Resources for building a post-treatment care plan exist online, but most are meant for healthcare professionals and should be used with your doctor or nurse. Find care-plan builders at journeyforward.org, oncolink.org and cancer.net.

The best time to create a plan is immediately after treatment, but if you didn’t do so, or if you are in ongoing treatment, it is not too late. The five-year mark, or after completing hormonal or targeted treatment, are also great times to create or update a care plan.

Update your plan any time you have a significant change to your health—even years after you create the plan. Ask your provider to revise your plan after follow-up tests and surgeries or if you have long-term side effects.

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