Desmoid Tumor: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 10/2021

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

Care for people diagnosed with a desmoid tumor does not end when active treatment has finished. Your health care team will continue to check that the tumor 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. 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 as possible.

For people treated for a desmoid tumor in an arm or leg, a rehabilitation program after surgery or radiation therapy can help them regain or maintain limb and joint function. Range-of-motion exercises, strengthening exercises, and a program to reduce lymphedema may be recommended. A rehabilitation medicine specialist can help patients receive the most appropriate rehabilitation after treatment. In the rare instances when treatment includes amputation, services that provide artificial limbs, called prosthetics, and additional mental health support can help manage the adjustment to life following the loss of a limb. Learn more about cancer rehabilitation.

One goal of follow-up care is to check for new tumor growth or if the tumor has come back after surgery, called recurrence. Because desmoid tumors can be inactive, or stable, for a long period of time, your doctor will recommend a plan to monitor for new growth. A tumor recurs because small areas of tumor 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. Desmoid tumors often recur locally, and their behavior is unpredictable. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of tumor growth or recurrence. Your doctor will ask specific questions about your health. Some people will have imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the size and location of the desmoid tumor. In general, a person who received desmoid tumor treatment, with or without surgery, should have a physical exam and/or imaging tests on a regular schedule decided by their doctor. These tests will often be less frequent if there are no signs of tumor growth. In some cases, a physical examination alone, without a scan, will be performed. If the tumor is being treated with medication, blood tests may also be done.

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

Learn more about the importance of follow-up care.

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.

Talk with your doctor about your risk of developing such side effects based on the individual factors of your tumor, your specific treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them.

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 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 care of their primary care doctor or another health care professional. This decision depends on several factors, including side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in treating your desmoid tumor will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with them and with all future health care providers. Details about your treatment for a desmoid tumor 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 tumor diagnosis. Use the menu to choose a different section to read in this guide.