Follow-Up Medical Care

Getting a Follow-Up Care Plan

Once your cancer treatment ends, you should receive a follow-up cancer care plan from your oncologist or someone on your treatment team. A follow-up care plan is a set of recommendations for your cancer care after treatment ends. Many cancer organizations recommend the use of such a document.

For follow-up cancer care, you may see the same doctor who treated you for cancer, or you may see another health care provider, such as one who specializes in follow-up care for cancer survivors. Or you may decide to go to your primary care doctor. You can discuss which doctor(s) to see with your health care team.

Follow-up care for childhood cancer survivors is very similar to the steps for adults. While most of the information below is equally important for children, see Care for Childhood Cancer Survivors for more tips.

Common Questions After Treatment Ends

When you receive your follow-up care plan from your doctor or other health care provider, answers to the questions below should be provided. Make sure to ask any other questions you may have:

• How long will it take for me to get better and feel more like myself?
• Which doctor(s) should I see for my follow-up care? How often?
• What symptoms should I watch out for?
• What tests do I need after treatment is over? How often will I have them?
• What are long-term health issues I might expect as a result of my cancer treatment?
• What is the chance that my cancer will return?
• What records do I need to keep about my treatment?
• What can I do to take care of myself and be as healthy as possible?
• Can you suggest a support group that might help me?

You might find it helpful to write these questions down. When you meet with the doctor or follow-up care specialist, you can take notes or record your talks to refer to later. Talk about any concerns you have related to your follow-up care plan.

Your Follow-Up Care Schedule

Each patient has a different follow-up care schedule. How often you return for follow-up visits is based on:

• the type of cancer you had
• the treatment you received
• your overall health, including possible treatment-related problems

In general, people return to the doctor for follow-up appointments every 3 to 4 months during the first 2 to 3 years after treatment, and once or twice a year after that.

At these visits, you may have a physical exam along with blood tests and other necessary tests and procedures. Which tests you receive and how often you receive them will be based on what your doctor thinks is best for you when creating your follow-up care plan.

What to Tell Your Doctor During Follow-Up Visits

When you meet with your doctor for follow-up visits, it’s important to talk openly about any physical or emotional problems you’re having. Always mention any symptoms, pain, or concerns that are new or that won’t go away. But keep in mind that just because you have new symptoms, it doesn’t necessarily mean the cancer has come back. It’s normal to have fears about every ache and pain that arises, but they may just be problems that your doctor can easily address.

Other things you should tell your doctor:

• Any physical problems that interfere with your daily life, such as fatigue; problems with bladder, bowel, or sexual function; having a hard time concentrating; memory changes; trouble sleeping; or weight gain or loss
• Any new medicines, vitamins, herbs, or supplements you’re taking
• Changes in your family medical history
• Any emotional problems you’re having, such as anxiety or depression

It’s important to be aware of any changes in your health between scheduled visits. Report any problems to your doctor immediately. They can decide whether the problems are related to the cancer, the treatment you received, or an unrelated health issue.

Your Treatment Summary

Your oncologist or a member of your treatment team should give you a written summary of the treatment you received. Keep this with you to share with your primary care doctor and any other doctors you see. Many people keep their treatment summary in a binder or folder, along with their medical records. This way, key facts about your treatment will always be in the same place.

Types of health information in the treatment summary

The date you were diagnosed

• The type of cancer you had
• Pathology report(s) that describe the type and stage of cancer in detail
• Places and dates of each treatment, such as the details of all surgeries; the sites and total amounts of radiation therapy; and the names and doses of chemotherapy and all other drugs
• Key lab reports, x-ray reports, CT scans, and MRI reports
• List of signs and symptoms to watch for and possible long-term effects of treatment
• Contact information for all health professionals involved in your treatment
• Any problems that occurred during or after treatment
• Any supportive care you received during treatment (such as medicines for depression or anxiety, emotional support, and nutritional supplements)

Many cancer survivors say that getting involved with their follow-up care was a good way for them to regain some of the control they felt they lost during cancer treatment. Being an active partner with your doctor and asking for help from other members of the health care team is the first step. Knowing what to expect after cancer treatment can help you and your family make plans, lifestyle changes, and important decisions about the future.

Guidelines for Follow-Up Care

The following programs or organizations provide helpful follow-up care guidelines for some cancers. You can use them to help you talk with your doctor, but they aren't meant to take the place of your doctor's knowledge or judgment.

The American Society of Clinical Oncology (ASCO) provides care plans and follow-up care guidelines for cancer survivors.

The Children’s Oncology Group, an NCI-supported clinical trials group, offers long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. It also has a series of fact sheets called Health Links, which provide information for healthy living after childhood cancer.

The Journey Forward, a program created by a group of cancer-related organizations, provides a set of easy-to-use tools to help patients create a survivorship care plan. Its online “Cancer Care Plan Builder” allows your oncologist (or other cancer follow-up care specialist) to create a full medical summary and recommendations for follow-up care for you and your health care providers.

The OncoLife Survivorship Care Plan was developed by Livestrong and the University of Pennsylvania. It provides survivors of adult cancers with a personalized survivorship care plan, based on the information they enter into an online program.

The National Comprehensive Cancer Network (NCCN) includes information about follow-up care for cancer, along with guidance on making a follow-up care plan.

Guidelines for a Healthy Lifestyle After Cancer Treatment

After cancer treatment, many survivors want to find ways to reduce the chances of their cancer coming back. Some worry that the way they eat, the stress in their lives, or their exposure to chemicals may put them at risk for recurrence. Cancer survivors find that this is a time when they take a good look at how they take care of themselves and how they might live a healthier life.

Ask your doctor about developing a survivorship care plan that includes ways you can take care of your physical, emotional, social, and spiritual needs. If you find that it's hard to talk about these issues, it may be helpful to know that the more you do it, the easier it becomes. Your doctor may also suggest another member of the health care team for you to talk with about wellness, such as a social worker, nutritionist, clergy member, or nurse.

Some general tips for all cancer survivors include:

Quit smoking. Smoking after cancer treatment can increase the chances of getting cancer at the same or a different site.

Cut down on how much alcohol you drink. Drinking alcohol increases the risk of certain cancers.

Maintain a healthy weight. Eating well and staying active can help you reach a healthy weight and stay there.Eat well. A healthy and balanced diet is important for overall wellness. This includes eating fruits, vegetables, whole grains, and protein. Talk with your doctor or a dietitian to find out about any special dietary needs that you may have. You could also ask if you should talk to a nutritionist for guidance on eating a healthy diet.

Eat well. A healthy and balanced diet is important for overall wellness. This includes eating fruits, vegetables, whole grains, and protein. Talk with your doctor or a dietitian to find out about any special dietary needs that you may have. You could also ask if you should talk to a nutritionist for guidance on eating a healthy diet.

Exercise and stay active. Research suggests that staying active after cancer may help lower the risk of recurrence and lead to longer survival. In addition, moderate exercise (walking, biking, swimming) for about 30 minutes every—or almost every—day can:

• Reduce anxiety and depression
• Improve mood and boost self-esteem
• Reduce fatigue, nausea, pain, and diarrhea

It’s important to start an exercise program slowly and increase activity over time. Some people may need to take special care in exercising. Talk with your doctor before you begin any exercise program, and work with your doctor or a specialist (such as a physical therapist) if needed. If you need to stay in bed during your recovery, even doing small activities can help. Stretching or moving your arms or legs can help you stay flexible, and relieve muscle tension.

Research in Follow-Up Care

NCI recognizes the importance of follow-up care after cancer treatment. Below are examples of NCI-supported research to improve the lives of cancer survivors.

Childhood Cancer Survivor Study (CCSS). The CCSS was created to gain new knowledge and educate cancer survivors about the long-term effects of cancer and cancer therapy, and to provide information about follow-up care.

Experience of Care and Health Outcomes of Survivors of Non-Hodgkin’s Lymphoma (ECHOS-NHL). The ECHOS-NHL study was designed to better understand the follow-up care experience of survivors of aggressive NHL, as well as their health outcomes.

Follow-up Care Use Among Survivors (FOCUS). The FOCUS study was created to better understand the many aspects and quality of follow-up care, to document the prevalence of late and long-term effects of cancer and its treatment, to understand survivors’ knowledge of late and long-term effects, and to study health-related quality of life and behaviors in long-term survivors.

Healthcare Delivery Research Program (HDRP). The HDRP was established by NCI’s Division of Cancer Control and Population Sciences (DCCPS) in January 2015 to advance innovative research to improve the delivery of cancer-related care and follow-up care.

Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS). The purpose of the SPARCCS study was to identify perceptions, knowledge, and practices of primary care and oncology specialist physicians about follow-up care of adult cancer survivors after treatment.