After you are diagnosed with follicular lymphoma, your doctor may tell you that the best course of action is simply to watch and wait. When you hear the word “cancer,” it might seem surprising that the doctor doesn’t want to treat it right away. But “watch and wait” – also called “active monitoring” or “active surveillance” – is a common approach to follicular lymphoma in many people.
Learn why it’s sometimes OK to wait to treat this type of blood cancer so you can begin to feel comfortable with your choice.
It’s Sometimes OK to Watch and Wait
Follicular lymphoma is described as an “indolent” disease. Indolent is another word for lazy. In most people, it is a very slow-growing cancer.
On average, people live for more than 20 years after diagnosis with this disease. Decades of data show that earlier treatment doesn’t change long-term outcomes for people who are eligible for the watch-and-wait approach.
Cancer treatment comes with side effects, and some of them can be very serious. So doctors don’t want to start treatment until it’s going to bring more benefits than risks.
Who Can Watch and Wait
Not everyone should wait to treat their follicular lymphoma. Doctors very carefully consider which of their patients can take this approach. They study blood test results and images of your lymph nodes and ask you questions about your symptoms before they make their recommendation.
People who benefit from active monitoring have:
- Advanced-stage disease
- No symptoms
- Low disease burden
Low disease burden simply means you don’t have a lot of disease in your body. It’s determined by:
- The size of your lymph nodes or tumors
- Number and location of sites in your body affected by lymphoma
- Presence of symptoms
- Various lab results
What It Means to Watch and Wait
Active monitoring means you are under the close watch of your care team. It doesn’t mean no one is doing anything. You will have routine medical appointments that include physical exams and tests. The appointments may be every couple months at first. If your condition stays the same, you may be able to drop down to fewer appointments later on.
During routine follow-up, the doctor will:
- Do a physical exam to check for enlarged lymph nodes or other signs the cancer may have progressed
- Take your temperature, pulse, and blood pressure
- Listen to your heart and lungs
- Order blood tests
- Ask you questions about your symptoms
Your doctor may not order scans if there’s no reason to believe the cancer has grown.
Of course, if your symptoms change or you are concerned about something between appointments, don’t wait until your next medical appointment. Contact your care team so you can get in sooner.
When Not to Wait
At each of your follow-up appointments, your health care providers will look for and ask you about any signs that your cancer may have changed or progressed.
Any of the following can be signs that it’s time to start treatment:
You have symptoms. If your cancer starts to grow or progress, you might see and feel the signs of it. Symptoms include:
- Painless swelling in your neck, armpit or groin – a sign that your lymph nodes are getting bigger
- Fever
- Heavy night sweats or chills
- Sudden, unintended weight loss
- Fatigue that interferes with your daily life
Your doctor detects new signs. If you develop symptoms, your doctor may be able to find other signs of progressing disease, too. Doctors use tests, scans, and physical exams to look for the following:
- A lymph node or mass that’s larger than 7 centimeters
- Presence of disease in three or more lymph node areas
- An enlarged spleen
- Poor or declining organ function
- Fluid retention in your belly or your lungs
- Elevated levels of substances in the blood that could suggest the presence of cancer
- Low blood counts
If your doctor finds your cancer has progressed, it’s likely time to start treatment.
Feeling Anxious While You Wait
Active surveillance can feel a lot like doing nothing, which is not the recommendation you’d expect would follow a cancer diagnosis. It can be uncomfortable to simply wait. For many people, knowing that you have cancer and not treating it can cause anxious feelings. Many doctors and patients alike have referred to the approach not as “watch and wait” but as “watch and worry.”
Here are some ways you can reduce anxiety and feel more in control of your condition:
Tell your doctor how you feel. Your doctor’s recommendation to watch and wait should not outweigh your anxiety about it. Some patients with advanced, low-burden, asymptomatic disease receive a course of a targeted drug called rituximab before starting the watch-and-wait period. Ask your doctor if it would be an option for you.
Seek a second opinion. You don’t have to take the recommendation of the first doctor you see. You have every right to get a second opinion on the best way to treat your cancer. Find out if another doctor agrees that active monitoring is the best approach.
Educate yourself. You may feel more empowered when you learn more about your diagnosis. Learn everything you can about it – especially the signs and symptoms that may mean it’s time to start treatment.
Go to all your doctor’s appointments. Never skip an appointment even though you’re feeling fine. These appointments help ensure it’s safe to keep monitoring without treatment.
Stay healthy. Keep your body at its strongest by living a healthy lifestyle. That means don’t smoke, eat a healthy diet, exercise regularly, and get plenty of sleep.
Get support. If you are worried or afraid, you are not alone. Join a support group, where you will hear from other people going through the same thing as you. You can also connect with fellow lymphoma patients who are watching and waiting like you. The Patti Robinson Kaufmann First Connection Program is a free service that matches patients with blood cancer with trained peer volunteers who have shared similar experiences. If your fear and anxiety are interfering with your daily life, responsibilities, and relationships, get professional help. Ask your doctor for a referral to a counselor.
