Survivorship care plans

When you finish initial treatment, you may be overwhelmed with questions about your future health. You may have concerns because you aren’t seeing your providers as often as before or feel unsure how to move forward with your care.

One tool that can help is a survivorship care plan, a post-treatment care plan. This is a written report with details about your breast cancer treatment, standards for follow-up care and methods to maintain your health. Survivorship care plans improve communication between you and your cancer care team, and between your cancer care team and other doctors who provide ongoing care for you after you finish breast cancer treatment.

Survivorship care plans are becoming more common. Many are based on findings from a 2005 report from the Institute of Medicine, From Cancer Patient to Cancer Survivor: Lost in Transition. As of January 2015, facilities accredited by the American College of Surgeons' Commission on Cancer must offer you a survivorship care plan. But even if your provider does not offer it, you can  start a survivorship care plan yourself and bring it with you to your next doctor’s appointment.

Basics of survivorship care plans

A survivorship care plan is a written document for you to keep. You may bring it with you to appointments with your primary care doctor, gynecologist, cancer team or other doctors who care for you.

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

Your plan is unique to you and your breast cancer treatment, but all plans should have:

• A treatment summary, with information about the cancer (the size, stage, type, grade, and so on), the names and phone numbers of the providers who treated you, and the types and amounts of treatments you received
• Guidance about how to prevent new cancers, and ways to test and screen for breast cancer recurrence
• Information about long-term and late side effects that could result from breast cancer or its treatments, and methods to manage them

The survivorship care plan does not replace your medical record, but it has key information for any providers who might treat you in the future. Your plan might include:

• Information about your breast cancer diagnosis and treatment
• Ways to manage and detect late side effects and emotional concerns
• Standards for monitoring for a return of the breast cancer
• Ways to screen for other types of cancer
• Lists of places to go or doctors to see for your ongoing care
• Tips for health issues of possible concern to people who have had breast cancer, such as genetic testing and reconstruction
• Ideas to help you manage your overall health with diet, nutrition, exercise and more
• Resources for financial and insurance concerns

A post-treatment care plan is a living document. It grows over time as your health changes and you get further away from your breast cancer diagnosis.

Getting started

A member of your cancer care team, usually a doctor or nurse, should offer you a survivorship care plan. Using your medical records, your provider writes the plan and then reviews it with you. You may receive it at any point during your care, but the plan is usually offered as you finish initial treatment.

The Commission on Cancer standard only requires survivorship care plans to be offered to people with early-stage breast cancer. But many centers offer plans to people with metastatic disease as well. If you have stage IV breast cancer and want a survivorship care plan, speak with your doctor or nurse.

If you are not offered a survivorship care plan, ask your healthcare provider to help you create one. You can create a plan at any time. If your treatment ended a while ago, you may need to gather your medical records from other doctors. Some online resources you and your provider may use to build a plan include:

• American Society for Clinical Oncology, with videos, information and resources
• Journey Forward, with separate resources for you and your care team to build a plan
• LiveStrong and OncoLink's care plan, to jump start a conversation with your team

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