Cancer Care Planning
People with cancer should have a coordinated plan for their treatment and follow up from the time they are diagnosed through all the years of their survivorship. By having their plans laid out in writing and reviewed in person with the doctor, people dealing with cancer are in a better position to understand the process ahead, advocate for themselves, monitor their health, and participate in decisions about their care – not just their cancer treatment and its side effects, but also their social and emotional needs.
Treatment plans
Cancer is not just one disease. There are many different types of cancer, and most of them are complicated. For nearly all types of cancer there are multiple possible treatment options. Each possible option may have a different set of risks, side effects, and potential level of effectiveness. A structured process for the planning of treatments – beginning with a thorough discussion between the doctor and patient – gives patients an opportunity to understand the goals of treatment, the pros and cons of various treatment options, how side effects will be managed, whether they have emotional or psychosocial needs to address, and whether they should consider participating in a clinical trial.
Treatment summaries and follow-up care plans
Furthermore, increasing numbers of people are surviving cancer and living with follow-up healthcare needs, making their experience more like having a chronic illnesses than a fatal disease. An effective cancer care planning process continues beyond treatment and throughout the survivor’s life. Written plans from the doctor that are reviewed with the patient allow patients to be informed decision-makers with regard to their care. These plans can also help coordinate care by making essential information readily available to other professionals who might also be caring for the survivor (i.e., cardiologist, primary care physician, internist, gynecologists and other specialists).
Evidence
Many cancer experts agree that survivorship care planning is essential to providing quality cancer care. Some of the most recent evidence can be found in the Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition. Additional evidence can be found in earlier IOM reports, such as Ensuring Quality Cancer Care.
Read the IOM fact sheet on post-treatment care planning.
Elements of a plan for quality cancer care
Survivorship care plans should begin before treatment and include, but not be limited to:
A treatment plan that outlines
- Goals of the proposed treatment
- Anticipated immediate and long-term side-effects and how they will be managed, as well as any known information about possible late-term effects
- An assessment of the patient’s need for emotional and psychosocial support services.
- Information about clinical trials, if relevant.
A treatment summary and follow-up plan including
- Your cancer diagnosis, treatments received (including names of the drugs and dosages) and their potential known long-term effects;
- Specific information about the timing and content of recommended follow-up (for example, screening tests for recurrences and/or secondary cancers, follow-up visits with your oncologist, etc.);
- Recommendations about preventative practices and how to maintain health and well-being (for example, nutrition, exercise and emotional support);
Read more by downloading the IOM fact sheet on post-treatment care planning.
Additional resources
NCCS has been working with many organizations to make survivorship care planning a reality, including the American Society of Clinical Oncology (ASCO). More information on ASCO’s efforts can be found at www.cancer.net/patient/Survivorship.
Other valuable resources include:
- Journey Forward: www.journeyforward.org
This program offers a kit of materials for both patients and physicians, including an electronic Survivorship Care Plan Builder for the doctor and electronic Medical History Builder for patients. These materials are currently designed for survivors of breast and colon cancer but will be expanded to include other cancers in the future and may serve as useful samples in the meantime. - Institute of Medicine fact sheet on post-treatment care planning.
- The NCCS publication, Teamwork: The Cancer Patient’s Guide to Talking With Your Doctor teaches survivors and their loved ones how to best address their concerns with their doctors and other members of their healthcare team.
- Knowing how to approach your doctor is the first step in asking for a survivorship care plan.
- The Cancer Survival Toolbox® module, Living Beyond Cancer helps people develop the skills needed to adapt to life after cancer treatment.
