Recover Survivorship Survivor Empowerment Plan
Survivorship is a continuous and ongoing process rather than a stage or outcome of survival. It is not just about a cure, your long-term survival or even living five years past your diagnosis. Instead, survivorship is the experience or process of living with, through and beyond cancer.
Survivorship is not only knowing what after-treatment resources and support are available to you; it’s about taking charge of your health and wellness, and building your competency for long-term self-management and self-care. Only then will you be empowered to live a strong, healthy and vibrant life.
Being empowered means fully understanding your own needs better than anyone else does and that it is in your best interest for you to lead your recovery from treatment, making informed decisions about what you must do to enhance your quality of life.
Empowerment as a breast cancer survivor is, at its essence, self-advocacy: You’re standing up for yourself in order to develop a plan of action with specific goals.
The physical, psychosocial and economic issues of your survivorship should be part of your action plan, based on your diagnosis and treatment. Let’s call this your survivorship empowerment plan. Each survivor’s plan will be different, especially if you have metastatic breast cancer versus being in recovery mode after treatment.
In both cases, there is a range of physical, psychosocial and economic issues that a survivor deals with, and although for each person survivorship has a different meaning, it is still important to ensure your overall health and well-being. This includes getting the proper follow-up care and support needed to enhance the survivor’s quality of life.
Each may have difficulty adjusting to and learning to live her life with uncertainty. For metastatic breast cancer survivors, there typically is no end to treatment, so their life expectancy may be their primary concern, which is why the term “survivor” often is controversial in this community.
For non-metastatic breast cancer survivors, fear of recurrence, the return of cancer, is a common emotion that they face after treatment ends. It may cause a survivor to overinterpret the significance of minor physical pains or problems, or to become obsessive about the least little thing, worrying unnecessarily.
If you’re having some anxiety about recurrence, you should discuss your feelings -- and your actual risk of recurrence -- with your doctor. Although, for some survivors, a doctor visit also can be a source of anxiety in the beginning, maintaining a regular schedule of follow-up visits can provide a sense of control and will help ease those fears.
To help overcome your fears and enhance your quality of life, you can develop a personalized survivorship empowerment plan. Traditionally, it is known as a “survivorship care plan,” which is a coordinated post-treatment plan between your oncologist, primary-care physician and other relevant healthcare professionals that make up your medical team. In the traditional survivorship care plan, your oncologist creates a summary of your treatment that includes the direction of future care.
A traditional survivorship care plan includes:
If you are not familiar with your plan and/or your oncologist has not created one for you, you can learn how in the Journey Forward Survivorship Toolkit
- A patient diagnosis and treatment summary
- The best schedule for follow-up tests
- Information on late- and long-term effects of breast cancer treatment
- A list of symptoms to look for
- A list of support resources
Once you’re up to speed on how to create your own survivorship care plan, you can access the Journey Forward Survivorship Care Plan Builder program. Before you begin, you can view the sample Survivorship Care Plan for Breast Cancer.
It is important, however to be aware that, traditionally, most survivorship care plans only focus on your medical care and follow-up. The other aspects of your survivorship, as outlined in the “Ten Dimensions of Wellness,” also need to be included. You can use Breast Cancer Partner’s Roadmap to Recover, Restore, Reenergize to develop a personal survivorship empowerment plan that integrates a more holistic approach to your recovery, helping you manage your health and wellness and quality of life.
The following resources provide additional information to help you enhance your breast cancer survivorship:
YourShoes 24/7 Breast Cancer Support Center
Living Beyond Cancer’s - Practical Tools for Living with a History of Breast Cancer
LIVESTRONG Centers of Survivorship Excellence
LIVESTRONG Survivor FAQs
LIVESTRONG Cancer Support Services
Journey Forward Survivorship Care Plan Builder
California Pacific Medical Center's Survivorship ManualYour Guide to Health, Healing and Wellness
Institute of Medicine and National Research Council - Executive Summary: From Cancer Patient to Survivor Lost in Transition
National Cancer Institute Cancer Control Survivorship Research
For more information on survivorship, go to Survivor Tools and Resources. You can share your knowledge and experience with other survivors at Survivor Tips or start a discussion in our Partner Forum.