Watching and waiting

Indolent lymphomas may remain stable for months, or even years. This makes it possible for some people to delay having treatment until it is needed. Doctors call this watch and wait.

People who delay treatment live just as long and respond as well to treatment as people who start treatment immediately. But, they are able to avoid the side effects of treatment for longer.

If you decide to follow watch and wait, you’ll see your cancer specialist regularly. At each appointment they’ll check for signs that you may need treatment such as:

  • unexplained weight loss
  • anaemia (low haemoglobin)
  • very enlarged lymph nodes
  • a build-up of fluid in your tummy or lungs.

Watch and wait can be difficult to adjust to at first. It may help to use your time without treatment to do the things you enjoy and get as fit and healthy as you can. Make sure you understand why it is recommended. If you have any concerns, talk to your cancer specialist.

Watching and waiting and non-Hodgkin lymphoma

This is an option for some people with indolent lymphoma. It’s not suitable for aggressive lymphoma.

Watch and wait is most likely to be offered to people who have advanced-stage indolent lymphoma (stage 3 or 4) but who aren’t having symptoms. It’s a way of delaying treatment until it’s needed.

The average time that people follow a watch and wait treatment plan is about three years. But, for some people it’s shorter than this, and for others it can be much longer.

Sometimes people worry when they’re told they won’t begin treatment immediately. However, there can be many advantages to delaying treatment.


Advantages of watch and wait

  • People who don’t have treatment until it’s needed live for as long, as people who start their treatment immediately. They also respond to treatment just as well.
  • Delaying treatment means you won’t experience side effects from treatments such as chemotherapy until absolutely necessary.
  • Effective treatments can be kept in reserve for you until they’re needed.
  • Indolent lymphoma can go through periods when it’s more active and periods when it’s stable or even shrinks. In some people, the lymphoma may shrink without any treatment. This is called spontaneous regression.


Monitoring

Even when you’re not having any treatment for lymphoma, you’ll still see your cancer specialist regularly. At each appointment they’ll check for signs that show you may need to start treatment. Changes that might mean you need to begin treatment include the following:

  • Unexplained weight loss, severe night sweats, or unexplained fever. A lower than normal number of red blood cells (anaemia), white blood cells or platelets in your blood.
  • The lymphoma starting to grow quickly.
  • The lymphoma starting to affect an important organ, such as a kidney.
  • The lymph nodes get bigger than 5-7cm (2-3in) This is called bulky disease.
  • A build-up of fluid in the tummy area (ascites) or in the lining of lungs (pleural effusion).


Coping with watch and wait

If you’re worried about delaying treatment, you might find these tips helpful:

  • Make sure you understand why watch and wait is recommended. If you have any concerns, talk to your doctor.
  • Think of your time without treatment as an opportunity to makes the most of your quality of life. Use it to do things you enjoy, and to get as fit and healthy as you can. You may find our sections on eating well and physical activity helpful.
  • Try to focus on the present rather than what might happen in the future.
  • Express your feelings - you can do this by talking to family and friends, joining a support group or online forum, or by keeping a journal.

Although watch and wait can be difficult to adjust to at first, many people find it gets easier as time goes on.