Living with survivorship care plans

Overview

A survivorship care plan is a personal document you receive after finishing cancer treatment. It summarizes the treatment you had, describes your follow-up care schedule, and helps you understand potential late effects. Think of it as a roadmap for your health after cancer.

Survivorship care plans are becoming a standard part of cancer care in many countries. They are offered to many people after they complete active treatment, although the exact format may vary by healthcare system.

Survivorship care plans are for anyone who has finished cancer treatment, including children, teenagers, adults, and older adults. They are made to fit the needs of each survivor, whether you finished treatment recently or many years ago.

Symptoms

Common symptoms

• Fatigue that does not go away with rest.
• Mild pain or discomfort in the body.
• Memory or concentration problems, sometimes called 'chemo brain' or 'brain fog'.
• Anxiety or worry about the cancer returning.
• Trouble sleeping or persistent sleepiness.
• Changes in the way your body feels, such as numbness or tingling.

Symptoms in children

• Growth or development delays.
• Learning difficulties or trouble concentrating in school.
• Late effects of treatment that may appear during puberty or young adulthood.

Symptoms in older adults

• Increased weakness or fatigue.
• Worsening of existing health problems, such as heart disease or arthritis.
• More difficulty managing daily activities independently.

Causes

Main causes

• A survivorship care plan is not caused by anything—it is a care tool given to you after cancer treatment.
• The need for a survivorship care plan comes from the fact that cancer treatments can have long-term effects on your health.
• The plan helps address health issues that may arise after treatment, such as damage to organs, nerves, or the immune system.

Risk factors

• You are more likely to need a detailed survivorship care plan if you received chemotherapy, radiation, or combination treatments.
• Certain types of cancers and treatment doses increase the risk of late effects.
• Having other health conditions, such as diabetes or heart disease, may make follow-up care more complex.

When to see a doctor

See a doctor urgently if:

• If you notice any new or worsening symptoms that might be related to your cancer or treatment, call your healthcare team the same day.
• If you have signs of an infection, such as fever or chills, seek medical care promptly.
• If you feel overwhelmed by anxiety or depression, reach out to your doctor or a mental health professional right away.

Book a routine appointment if:

• Follow the follow-up schedule in your survivorship care plan.
• Get routine health checks, including blood pressure, cholesterol, and cancer screenings as recommended.
• Talk to your doctor about any ongoing symptoms, even if they seem minor.

Diagnosis

A survivorship care plan is not a diagnosis. It is a care summary created by your oncology team after your active cancer treatment ends. They review your medical records and develop a personalized plan for you.

Tests that may be done

• A complete physical exam by a doctor familiar with cancer survivorship.
• Blood tests to check organ function and overall health.
• Imaging tests, if needed, to check for signs of recurrence or late effects.
• Screening tests for other cancers or health conditions, based on your history.

What to expect at your appointment

When you receive your survivorship care plan, your care team will explain it to you. You will learn about your treatment history, what symptoms to watch for, and which doctor appointments you need. This is also your chance to ask questions and share any concerns you have.

Treatment

The survivorship care plan itself is not a treatment. It is a guide to help you manage your ongoing health. Your healthcare team will use it to coordinate follow-up care, manage late effects, and support your overall well-being.

Self-care at home

• Keep a copy of your survivorship care plan and bring it to every medical appointment.
• Use a calendar or app to track your follow-up appointments and screening tests.
• Follow your care plan's recommendations for healthy eating, physical activity, and sleep.
• Write down any new symptoms and report them to your care team.
• Stay up to date with other routine health checks, such as dental and eye exams.

Medical treatments

Your healthcare provider may recommend treatments for late effects, such as physical therapy for fatigue or pain, or medications for conditions like thyroid problems or high blood pressure. Always ask your doctor about your specific needs—do not start any medicine without professional advice.

When is surgery considered?

Surgery is not a routine part of survivorship care plans. However, if a late effect or a new cancer is found, surgery may be recommended. Your care plan helps your doctors decide what steps are needed.

Living with this condition

Living with a survivorship care plan means taking an active role in your health. Follow your follow-up schedule, keep a list of your medicines, and don't hesitate to ask questions. Your care plan is a tool to help you feel confident and in control.

Lifestyle tips

• Stay physically active with activities you enjoy, like walking or swimming.
• Get enough sleep and find ways to manage stress, such as relaxation exercises or hobbies.
• Avoid smoking and limit alcohol, which can improve your overall health.
• Stay connected with friends and family who support you.
• Consider joining a cancer survivor group to share experiences.

Diet and exercise

A healthy diet packed with fruits, vegetables, whole grains, and lean proteins can help your body recover and stay strong. Regular exercise, even gentle movement, can reduce fatigue and improve mood. Always talk to your doctor before starting a new exercise routine.

Mental health and emotional wellbeing

Many cancer survivors feel anxious, sad, or uncertain about the future. These feelings are normal and can be especially strong after treatment ends. Your survivorship care plan should include guidance on emotional health, and your care team can connect you to counseling or support groups.

Prevention

Late effects of cancer treatment cannot always be prevented, but regular follow-up care can help you catch them early and manage them. A survivorship care plan is designed to reduce the impact of late effects by promoting healthy habits and timely screening.

Vaccines

Cancer survivors may need certain vaccines, such as flu or pneumonia vaccines, depending on their treatment history. Talk to your healthcare provider about which vaccines are right for you. Do not get a vaccine without checking with your doctor first, especially if your immune system is weak.

Screening programmes

Your survivorship care plan will outline a screening schedule for cancer recurrence and for new cancers. This might include mammograms, colonoscopies, or skin checks, depending on your risk. Follow your doctor's recommendations.

Complications

If left untreated

• Late effects of cancer treatment may go unnoticed and become more serious, such as heart problems or secondary cancers.
• Anxiety or depression may worsen without proper support.
• Follow-up appointments may be missed, leading to delayed detection of recurrence or new health issues.

Long-term outlook

Having a survivorship care plan gives you a clear path forward. It empowers you to take charge of your health, with your care team by your side. Most survivors live full, active lives after cancer treatment. With regular follow-up and a positive approach, you can focus on the future with hope and confidence.

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