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Survivorship after treatment is an important phase of cancer care. The Institute of Medicine’s (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that each cancer patient receive a Survivorship Care Plan—a plan for wellness to help you continue to receive the best health care.
The following information is based on the general recommendations from the IOM.
We know that cancer care doesn't end when treatment is done. Some chronic conditions may include an increased risk for a recurrence of cancer or a high risk of developing a new type. There might also be concerns about long-term emotional issues, physical limitations or cognitive changes such as memory loss.
Cancer survivors deserve informed, quality health care. However, some primary care physicians and other health care providers who have not specialized in cancer care may not understand all that is needed post treatment. Work with your oncology team and primary care provider to develop a Survivorship Care Plan that includes:
- Records of your medical history.
- Specific information about your cancer diagnosis and treatment.
- Information about possible late effects and signs of a recurrence or new cancer.
- A schedule for follow-up health care including screening tests.
- Tips on cancer prevention and suggestions for maintaining a healthy lifestyle.
- How to find quality health care and other support services.
The American Society for Clinical Oncology provides a Survivorship Care Plan template for free to help you develop a personalized plan for post-treatment care.
Step 1—Create a Record of Your Medical History
A record of your medical history is helpful for loved ones and health care providers. It should include all medical issues with dates, symptoms, treatments received and side effects. Include facts from as far back as possible. You medical history should have:
- Types of vaccinations and immunizations you’ve had.
- Information about ongoing health problems including dental issues.
- List of the prescribed and over-the-counter medicines you take (dates taken, name of medication, dosage and name of the prescribing health care providers).
- Notes about side effects or reactions you had to medicines or treatments.
- History of pain problems including treatments and results.
- Information about specific cancer treatments and side effects.
- List of allergies and sensitivities.
- List of past injuries and surgeries with treatments and results.
- Information about diet and nutritional concerns.
- Facts about your family’s medical history including cancer, diabetes, heart conditions, stroke and other issues.
Step 2—Get a Cancer Treatment Plan Summary from Your Health Care Team
After your treatment is done, ask your oncology providers for a written cancer treatment plan summary. This document should contain information that can be shared with your primary care provider. It will also help future health care providers.
A cancer treatment plan summary (updated and completed after all of your treatment is done) can help ensure that you get the best possible future health care. Ask your provider to update your summary if there are new treatments.
To save time for your health care provider, fill in what you can on treatment summary forms such as the one in the Livestrong Planner & Journal. Take this form to the provider and ask him or her to complete what you couldn’t. Be certain that you, the oncology providers and your primary care provider keep a copy of your cancer treatment summary to help you get the best care and support in the future. Your cancer treatment plan summary should include:
- Descriptions of diagnostic tests, dates and results.
- Your specific cancer diagnosis including the type of cancer, date of diagnosis, where it occurred, stage, grade, hormonal status and markers.
- History of your cancer treatments and hospital stays including dates, dosages of medications and the agents that were used.
- Information about your cancer treatment responses, reactions and side effects.
- Other health care services that were provided such as physical therapy, psychosocial counseling and nutritional services.
- Names and contact information for the health care team members who were involved in your cancer treatment.
- Future cancer care recommendations including prevention methods and a schedule for ongoing screening tests.
- Future cancer care provider recommendations for follow-up care including names, specialties and contact information.
Step 3—Get a Follow-Up Care Plan
When treatment is done, your health care provider should supply you with a health care follow-up plan. This plan tells you what you need to do to stay physically and emotionally healthy. Your follow-up plan should include the specific types of health care you will need in the near and distant future. A follow-up care plan should tell you:
- What needs to be done in terms of future health care.
- When it needs to happen.
- Where you can get help including referrals to providers.
- Possible late and long-term effects of treatment including symptoms.
- Signs and symptoms of cancer recurrence and other types of cancers.
- Information about social and emotional support including support groups and counseling resources.
- Recommendations for healthy living including information about risks and prevention.
- Recommended schedule for medical tests, cancer screening and specific types of exams.
- Referrals to specific health care providers for follow-up care.
- Contact information for nonprofit cancer services and other resources.
Step 4—Ask Your Health Care Team to Address Your Concerns
Talk with your health care team about specific areas of concern in your life. You may have medical questions, relationship issues or day-to-day concerns. Members of your health care team can help you find answers. Talk with them as you work to develop your survivorship care plan. Below are examples of questions about life after cancer treatment.
- Can the cancer come back?
- Could a new type of cancer develop?
- What are symptoms and signs of recurrence or new cancer?
- What aftereffects of treatment are possible?
- How can aftereffects be treated?
- What can I do to stay healthy and prevent future health problems?
- Will I need ongoing therapies such as physical therapy?
- Will you provide a schedule for follow-up exam, screening and other medical tests?
- Where can I find information about genetic testing and counseling?
- What prescriptions and over-the-counter medications will I need?
- Will you refer me to health care specialists for follow-up care?
- What do you recommend about screening or testing for family members?
- Where can I find help with relationship problems?
- Where can I find support groups or counseling services?
- Will you give me a referral for sexuality or fertility concerns?
- Where can I find help with parenting or caregiving concerns?
- What types of changes could be made at work for my situation?
- Where can I find help with legal and financial issues?
- How can I find resources and information to help me with future insurance and health care benefits?
Step 5—Keep Your Health Care Team Informed
It’s important to talk with your health care provider if you have health concerns. Discuss symptoms that might be related to cancer. You may need to make an appointment to go back to your oncology team for further evaluation or care. Keep your health care team informed about problems you experience such as:
- Pain concerns.
- Signs and symptoms of possible cancer (recurrence or new type).
- Information about medications, supplements or other treatments you are taking.
- Emotional concerns such as depression or anxiety.
- Physical concerns including fatigue, memory changes and sleep problems.
- Relationship concerns.