Develop a Cancer Care Plan
< Resources for Living with and through Cancer
Receiving a diagnosis of cancer is the beginning of a journey with two major stages: the first starts with your cancer treatment, and the second begins when your treatment ends and you transition to "life after cancer." Developing care plans for both of these stages will help you receive comprehensive and coordinated health care throughout your life as a cancer survivor. The following will give you an idea of what to request from your care team, but you should be aware that efforts to implement systems of care planning before and after cancer treatment are new and not yet common practice, so a cooperative and flexible approach by both parties (you and your care team) will be valuable.
Planning for Your Treatment
If you are newly diagnosed, receiving a written plan for your treatment (Cancer Care Plan) will help you in many ways. For example, a written plan will give you a full view of the information that will enable you to ask questions and have a thorough discussion with your doctor, including potential side effects you should expect from treatment and how they will be addressed.
If you have more than one treatment option to consider, a written care plan may help you and your doctor discuss the pros and cons of each. A written care plan also can make it easier for you share details about your upcoming treatment with family members and caregivers so they, too, have a better idea of what to expect. Family and friends may help you think of additional questions to pose to your doctor before treatment begins.
Care plans are key to good management of cancer care. They improve communication between you and your physician and allow you to participate more fully in decisions related to your care. Your care plan can be used to coordinate your overall care, including not just your cancer treatment and its side effects, but also your social and emotional needs.
Planning for Your Future Health
Your need for care does not end with your last day of treatment. A diagnosis of cancer changes your health care needs for the rest of your life. As a cancer survivor you may face challenges in the years following your treatment, including:
- Cancer recurrence: a reappearance of the original cancer
- Second cancer: development of a new and entirely different cancer
- Organ damage: the effects of treatment on the heart, lungs, ovaries, testicles, bone marrow, and other organs
- Emotional and social issues: some of the most common include stress and depression, employment discrimination, fertility issues, and access to adequate health insurance
Although research in the field of cancer survivorship is underway, little is currently known about how to diagnose, prevent, and screen for the late effects of cancer and its treatment. This means that it is extremely important for you to be a strong advocate for your own good health care.
Upon completing treatment, you should request a formal consultation with your doctor and ask him or her for a Cancer Treatment Summary (a complete and detailed summary of your diagnosis and treatment) and a Survivorship Care Plan (a plan for lifelong follow-up care after your primary cancer treatment).
This is a relatively new practice for oncologists. The American Society of Clinical Oncology (ASCO) has created templates for physicians to use. (See Resources.) If your doctor is not using a template from ASCO or elsewhere, request that your Cancer Treatment Summary and Survivorship Care Plan include:
- Your cancer diagnosis, tumor characteristics, diagnostic tests performed, treatments received (including surgeries, chemotherapy, radiotherapy, names of drugs and dosages administered) and supportive services (including psychological and nutritional) you've made use of
- Dates for all diagnoses and treatments
- Potential late- and long-term effects of the treatments you received
- 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 preventive practices and how to maintain health and well-being (for example, nutrition, exercise, and emotional support)
- Complete contact information for members of your health care team
- A single point of contact for coordinating your continuing care
During the consultation, ask your doctor or nurse to explain the Cancer Care Summary and Survivorship Care Plan to you. It is important that you understand these documents. You should keep them in a safe place where you store other important personal records. Be sure to give copies to the health care providers who examine you in the months and years to come.
National Coalition of Cancer Survivorship
"Survivorship Care Planning"
"Your Life After Cancer Treatment" (PDF)
Institute of Medicine
"Cancer Survivorship Care Planning," Fact Sheet, November 2005
"From Cancer Patient to Cancer Survivor: Lost in Transition," Institute of Medicine, November 2005.
American Society of Clinical Oncology
"Cancer Treatment Summaries"
"Expert Corner: ASCO Cancer Treatment Plans and Summaries"