Active Surveillance

For patients with an indolent lymphoma who are not experiencing symptoms and who have a low tumor burden (i.e., small-sized tumors), it is often recommended that treatment be reserved for when symptoms appear. This approach is called “watchful waiting,” “watch and wait,” or “active surveillance.”

Types of lymphoma that grow slowly are referred to as indolent or low-grade lymphomas. Indolent lymphomas are often managed like a chronic disease (a disease that can be controlled but not cured), requiring long-term treatment and monitoring. Periods of remission followed by relapse (disease returns after treatment)) are common. For patients with an indolent lymphoma who are not experiencing symptoms and who have a low tumor burden (i.e., small-sized tumors), it is often recommended that treatment be reserved for when symptoms appear. This approach is called “watchful waiting,” “watch and wait,” or “active surveillance.” Active surveillance is not recommended for patients with fast-growing, aggressive lymphomas. Treatment for these patients is usually initiated as soon as possible after diagnosis.

With active surveillance, patients do not initially receive anti-lymphoma treatment. The lymphoma is not being ignored; rather, an active observation strategy is being used to follow it closely. With this strategy, patients’ overall health and disease are monitored through regular checkup visits. In addition, follow-up evaluation procedures that may include laboratory tests (like a complete blood cell count) and physical examinations (like checking for any swelling)), are performed often to determine if the lymphoma is progressing and how urgently treatment is needed.

Health care providers recommend active surveillance for selected patients with indolent lymphomas. This approach may be started after an initial diagnosis or following relapse, depending on individual conditions. Active treatment is started if the patient begins to develop lymphoma-related symptoms or if there are signs that the disease is progressing based on testing during follow-up visits.

The appearance of the following common symptoms of lymphoma might mean that treatment should be started:

• Recurrent or persistent fevers
• Drenching night sweats
• Unexplained weight loss
• Increasing tiredness or fatigue

Various other symptoms, such as pain, shortness of breath or increased abdominal girth can indicate a need to start treatment as well. As long as the patient feels generally well, the follow-up tests suggest that the disease has not progressed and no major organs are in danger of being compromised, treatment can be delayed. There is currently no evidence that early treatment in indolent lymphomas prolongs a patient’s survival. There are advantages to active surveillance over active treatment for a disease that is not progressing. For example, patients do not experience the many possible side effects associated with anti-cancer treatments that can negatively impact quality of life. Treatments are also associated with expenses and inconvenience. In addition, rapid progress is being made in developing new and more effective therapies for indolent lymphomas, which might be available when the patient eventually requires treatment.

Active surveillance can be difficult for patients emotionally. Patients should discuss with their physicians any concerns they may have regarding the active surveillance approach. The following are common questions patients might ask their doctors:

• What if I am uncomfortable with active surveillance and would rather receive treatment?
• Will the disease be harder to treat later?
• How often will I have checkups?
• Between checkups, what symptoms and other problems should I report?
• How will you know when it is time for treatment?
• How will you decide which anti-cancer treatment I should start?

Lymphoma Care Plan

Keeping your information in one location can help you feel more organized and in control. This also makes it easier to find information pertaining to your care and saves valuable time. The Foundation’s Lymphoma Care Plan document organizes information on your health care team, treatment regimen, and follow-up care. You can also keep track of health screenings and any symptoms you experience to discuss with your health care provider during future appointments. The Lymphoma Care Plan document can be accessed by visiting lymphoma.org/publications.

Patient Education Programs

The Foundation also offers a variety of educational activities, including live meetings and webinars for individuals looking to learn directly from lymphoma experts. These programs provide the lymphoma community with important information about the diagnosis and treatment of lymphoma, as well as information about clinical trials, research advances and how to manage/cope with the disease. These programs are designed to meet the needs of a lymphoma patient from the point of diagnosis through long-term survivorship. To view our schedule of upcoming programs, please visit lymphoma.org/programs.

Lymphoma Resource Center

The Foundation’s Lymphoma Resource Center staff are available to answer your general questions about lymphoma and treatment information, as well as provide individual support and referrals to you and your loved ones. Callers may request the services of a language interpreter. The Foundation also offers a one-to-one peer support program called the Lymphoma Support Network and clinical trials information through our Clinical Trials Information Service. For more information about any of these resources, visit our website at lymphoma.org, or contact the Lymphoma Resource Center at (800) 500-9976 or [email protected].

Para información en Español, por favor visite lymphoma.org/es. (For Information in Spanish please visit lymphoma.org/es).