There are many good treatments for non-Hodgkin's lymphoma, but don't be surprised if your doctor suggests not treating it for now. It's called "watchful waiting," and sometimes it's the best way to handle the disease.
You may also hear your doctor call this option "watch and wait" or "active surveillance." It doesn't mean you'll never get treatment. Your doctor will keep a close eye on your cancer and check for signs that it's getting worse. At that point, the two of you will discuss what kind of treatment is best.
About 30% of people with non-Hodgkin's lymphoma do watchful waiting after they first learn they've got the disease. Most of them don't get treated until 1 to 3 years later. Some folks go 20 years or more before they need treatment.
Once you do start treatment, the cancer usually responds just as well to methods like chemotherapy, radiation, and immunotherapy as if you began when you were first diagnosed. Most people also live just as long as if they had started treatment right away, and maybe even longer because there could be better treatments available by the time you start therapy.
With watchful waiting, you won't have to deal with treatment side effects such as losing your hair, infections, and feeling nauseous. And the time without treatment means your cancer cells won't become resistant to drugs or other types of therapy.
As long as you check in with your doctor regularly and stay aware of any changes in your body, there should be no extra risk.
Who should get watchful waiting?
Your doctor will only recommend watchful waiting if your disease is "indolent," which means that it's staying the same and not getting worse. To see if you're in that situation, he'll check your symptoms closely and look at the cancer cells under a microscope.
A type of non-Hodgkin's lymphoma called follicular lymphoma often gets the watchful waiting approach. Other types that may let you skip treatment for now are:
- Marginal zone lymphomas
- Lymphoplasmacytic lymphoma (also known as Waldenström's macroglobulinemia)
- Chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL)
Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) also sometimes gets watchful waiting, but not many people have this type of cancer.
What happens during watchful waiting?
Even though you don't get treatment, you'll visit the doctor often, usually every 3 to 6 months. He'll want to know if you have any symptoms, like feeling tired. He'll also see if there are any changes in your lymph nodes -- small organs that filter harmful things, including germs.
Your doctor may also order blood tests and screening tests such as CT scans, MRIs, or PET scans. They'll help confirm that parts of your body besides your lymph nodes, like your heart, lung, and kidneys, are still healthy.
These doctor's visits may be longer than normal appointments to make sure you have time to go over everything.
What should I do during watchful waiting?
Between doctor's visits, keep an eye on how you're feeling. Call your doctor if you notice any of these symptoms:
- Start to lose your appetite
- Shed pounds without trying
- Get fevers or sweats
- Feel more tired than usual
- Feel itchy
- Have lymph nodes that were already swollen start to grow more
- Have lymph nodes that weren't swollen before start to swell up
There could be other things besides your cancer, such as an infection, that could cause some of these symptoms. Your doctor may suggest that you wait a little longer to see if they go away. If non-Hodgkin's lymphoma is the cause, you still have time to get ready for treatment.
You can also use the time during watchful waiting to get as healthy as possible. If you do start treatment, you will want all your strength. Make sure you eat well, lose weight if you need to, quit smoking, get regular exercise, and go easy on the alcohol if you drink.
You may also want to find a support group, online or through your health care center. That way you can get the advice of people who are going through the same things you are.