Unknown Primary: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 08/2016

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

Care for people diagnosed with cancer doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, 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 with 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 patients 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.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. 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 also 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 originally diagnosed and the types of treatment given.

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 experience 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. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

For patients in specific, treatable subgroups (see the Treatment Options 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 ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, 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 him or her, as well as 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. Or, use the menu to choose another section to continue reading this guide.