Waldenstrom Macroglobulinemia (Lymphoplasmacytic Lymphoma): Follow-Up Care

Approved by the Cancer.Net Editorial Board, 10/2023

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

Care for people diagnosed with Waldenstrom macroglobulinemia 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. This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. Typically, follow-up visits are most frequent in the first 3 years after treatment for Waldenstrom macroglobulinemia.

Your doctor will periodically check the immunoglobulin M (IgM) in your blood to check for recurrence, along with an examination for enlarged lymph nodes or spleen. Tests such as CT scans or PET-CT scans (see Diagnosis) may also be recommended.

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 as possible. Learn more about cancer rehabilitation.

Several long-term side effects of cancer treatment may occur:

  • Heart damage in the form of a weakened heart muscle may occur in people who have received a higher dose of doxorubicin.

  • Infertility, which is the physical inability to have a child, as well as premature, or early, menopause can occur in people who have received high-dose cyclophosphamide or other types of chemotherapy.

  • Secondary cancers, which are other cancers that develop because of the original cancer treatments, are more common in people who received some types of chemotherapy.

Talk with your doctor about possible long-term effects of specific treatments you received. 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 type and stage of cancer 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.

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 your diagnosis, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may 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. The American Society of Clinical Oncology (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 care of their primary care doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, treatments received, 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.