Unknown Primary: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 10/2022

ON THIS PAGE: You will read about your medical care after cancer treatment is finished and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with cancer does not end when active treatment has finished. Your health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. Patients diagnosed with cancer of unknown primary (CUP) are a diverse group of people and recommended treatment plans vary, so the possible short-term and long-term effects of treatment are different. In addition, recommended follow-up and long-term prognosis varies from person to person. The recommendations in this section are directed primarily at people who are in remission after successful treatment.

In general, close follow-up care is recommended during the first year after treatment for CUP ends, with physical examinations and routine laboratory tests every 2 months and appropriate x-rays and scans every 3 to 4 months. After the first year, follow-up care will continue based on a personalized schedule.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors including the subgroup or subtype of CUP first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.

People who were treated for CUP should tell their doctor about any new symptoms right away. Talk with your doctor during your follow-up care appointments about specific symptoms to watch for.

Managing long-term and late side effects

Most people expect to have side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years after treatment has ended. Long-term and late effects can include both physical and emotional changes.

For patients in specific subgroups (see the Types of Treatment section) who received treatment based on guidelines for various cancers of a known primary site, the side effects and post-treatment recommendations are similar to those of that specific cancer. Please refer to that specific cancer type section for more information. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help diagnose and manage them.

For people who receive chemotherapy, most of the treatment-related side effects, such as low blood counts, fatigue, weakness, and joint aches, go away within 4 to 6 weeks after treatment ends. However, other possible side effects like peripheral neuropathy, which is numbness, tingling, or pain in the hands and feet, improve slowly and may take 6 to 12 months to go away.

Talk with your doctor about your risk of developing such side effects based on the subtype of CUP, your individual treatment plan, and your overall health.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan when treatment is completed.

This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general care of their primary care doctor or another health care professional. This decision depends on several factors, including the details of the CUP diagnosis, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with them, and with all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.