Active surveillance (watchful waiting) for young adults

Active surveillance (watchful waiting) involves closely watching a patient’s condition but not giving any treatment unless there are changes in signs, symptoms or test results that show the condition is getting worse. Active surveillance may be used to avoid or delay the need for treatments such as chemotherapy/targeted therapy, which can cause side effects or other problems. During active surveillance, certain exams and tests, such as blood tests and imaging tests, are done periodically to monitor the condition.

Some people can manage their blood cancer—depending on the disease—with their doctors for years using active surveillance. It is usually recommended for patients in early stages of indolent (slow-growing) or chronic forms of blood cancers.

Your doctor can monitor your condition for disease progression with regular physical exams and lab tests. You won't take any drugs or undergo any forms of treatment during this period.

If you have a nongrowing or slow-growing disease and no symptoms, active surveillance may be preferred; you can avoid drug treatment and its potential side effects until you need drugs. This approach is based on studies that indicate early treatment in some situations isn't beneficial.

What your doctor looks for during active surveillance

You may feel uncomfortable because you know that you have cancer, yet you're not being treated right away. Rest assured that active surveillance is the standard of care for people whose disease is not widespread and who have no symptoms.

You must visit your doctor regularly so he or she can check you for any health changes, specifically monitoring whether your disease remains stable or starts to progress. Your doctor monitors your test results to decide when it's time to start treatment and what the best treatment option is for you. Depending on the disease, your doctor may advise you to begin treatment if you have:

• Lymph nodes that are getting larger in the neck, armpits or groin
• Weakness or feeling tired
• Shortness of breath
• Feeling of fullness from an enlarged spleen or liver
• A relatively rapid increase in the number of lymphocytes in the blood
• Easy bruising or bleeding (caused by low platelet count)
• Worsening anemia (low red blood cell count)
• Frequent infections or illness
• Bone or other organs that have become affected by cancer
• Fevers when there is no infection
• Heavy night sweats
• Unexplained weight loss
• A loss of overall well-being

Active surveillance can also be the best approach for some patients diagnosed with widespread disease such as non-Hodgkin lymphoma that treatment won't likely cure. The disease, though widespread, can remain stable for years, letting patients avoid the side effects of needless therapy.

What else can I do during active surveillance?

Although you won’t receive treatment during active surveillance, there are still things you can do to improve your health and wellbeing. Taking control of what you can control may make you feel less anxious.

• Learn as much as you can about your diagnosis. Know the signs or symptoms that may mean it’s time to start treatment. Research the latest treatment advancements.
• Find a hematologist-oncologist who specializes in your diagnosis and establish yourself as a patient. When you do need treatment, you will already have access to someone familiar with your case who knows all the newest treatments available. (The specialist does not necessarily need to be the same doctor you see for monitoring during active surveillance.)
• Do not skip any doctor appointments, even if you are feeling well. Some patients may stay stable for years before symptoms or disease progression makes treatment necessary. If you notice changes in your well-being at any time, don’t wait to reach out to your healthcare team.
• Maintain health insurance coverage if at all possible. If you do need to begin treatment, you will need health insurance to help cover the cost. Even during active surveillance, regular appointments and testing can add up without health insurance coverage.
• Improve your health with nutrition, exercise, and other good health practices, such as not smoking and cutting back on alcohol. When the time comes, you will be at your best to tolerate treatment and at lower risk for serious treatment complications.
• Take care of your mental health. Join a support group or connect with a fellow active surveillance patient to help you work through your feelings and answer questions. The Patti Robinson Kaufmann First Connection Program is a free service that matches patients with trained peer volunteers who have shared similar experiences. If feelings of anxiety or depression begin to interfere with your daily activities, ask you healthcare team for a referral to mental health professional.

Questions to ask your healthcare team

• Is active surveillance the best treatment plan for me?
• What will my monitoring schedule be, and what tests will be included?
• What signs or symptoms will indicate that I need to begin treatment?
• What symptoms do I need to tell the healthcare team about immediately?
• What can I do during the active surveillance period to stay healthy and feel well?
• Where can I learn more about my diagnosis and active surveillance?
• How can I connect with other patients or find a support group?

See all of our question guides you can use to communicate with your healthcare team.