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Watch and Wait

What is 'watch & wait'?

'Watch and wait' refers to a period of time when you have no treatment for your condition. It is also sometimes referred to as 'active monitoring'. Your condition will be monitored by your specialist but treatment will be delayed until such time as you need it.

What are the benefits of 'watch & wait' compared to starting treatment straight away?

The main advantage of 'watch and wait' is that you will not be exposed to the risks of chemotherapy any sooner than is necessary. Also, by delaying chemotherapy until it is required, your potential for resistance to chemotherapy drugs will be kept to a minimum. This means chemotherapy is more likely to be effective in fighting the lymphoma when it is eventually given.

Why is 'watch & wait' recommended for my type of lymphoma?

'Watch and wait' is commonly used for people who have a low grade non-Hodgkin lymphoma. The most common type of lymphoma observed using the 'watch and wait' approach is follicular lymphoma. Other types of lymphoma that may be put on 'watch and wait' include: small lymphocytic lymphoma (the lymphoma equivalent of a type of leukaemia known as chronic lymphocytic leukaemia or CLL), Waldenström's Macroglobulinaemia, marginal zone lymphoma, and occasionally some forms of mantle cell lymphoma.

Why have I been put on 'watch & wait' when some people with my type of lymphoma have started their treatment straight away?

'Watch and wait' is recommended for people who feel well and do not have any problems caused by enlarged nodes, and have no significant problems with their liver, kidneys or other organs.

Will people who start treatment straight away have a better chance of going into remission than I will on 'watch & wait'?

No. Research from current clinical trials tells us that long-term survival rates of people with indolent lymphoma on 'watch and wait' are just as good as those who commence treatment earlier.

Will I definitely need treatment one day or can I stay on 'watch & wait' forever?

Over time your slow-growing (indolent) lymphoma will usually change and start to grow faster. Your lymphoma may even change subtype from an indolent subtype to an aggressive subtype. Changes in your lymphoma and escalation of its growth will result in you experiencing symptoms which may include lethargy, pain or fever. The time it will take for your lymphoma to start causing problems and symptoms varies from person to person. Some people may not require treatment for 20 years or more whilst others may need treatment much earlier usually within 1-3 years of diagnosis. Whether your lymphoma progresses slowly or quickly, treatment is eventually inevitable.

What happens during the 'watch & wait' period and when will I start treatment?

You will have regular appointments with your specialist or your GP, usually 1-2 monthly for the first 6 months and then 3-6 monthly after that. These visits are to check that your lymphoma is stable and has not progressed. Your doctor will conduct physical examinations where your lymph nodes will be palpated (the use of moderate to firm pressure on the surface of the skin using hands or fingers) and your organs felt for any signs of enlargement. You will have blood tests to check your blood count, and may be asked to keep a record or diary of any symptoms you may experience. You may also be sent for further testing such as a CT or PET scan. If any of these tests or examinations show that your lymphoma has progressed and/or suggest that major organs or bone marrow are affected, you will be advised to commence active treatment.

Can I do anything to help myself while I am on 'watch & wait'?

Evidence suggests that whilst there is no particular activity or diet that will keep your lymphoma at bay, taking care of yourself and living well will promote good health in general. Some suggestions for a healthier lifestyle include: taking regular exercise, eating a balanced diet, maintaining a healthy weight, limiting alcohol intake, cessation of smoking, engaging in relaxation techniques such as meditation or yoga, reducing your work hours if these are proving too demanding or stressful, and taking time to do things you enjoy such as walking, gardening, or reading a book. If you are interested in trying any sorts of therapies it is always important to check with your doctor first.

Are there any disadvantages to the 'watch & wait' approach?

The main disadvantage of 'watch and wait' is that you may find it difficult living with the knowledge that you have lymphoma and waiting for it to worsen before something is actively done about it. It is hard for some people to hear the words "you have lymphoma, but don't worry it doesn't need to be treated right away". Often, this is exactly what people do- they worry. For this reason, 'watch and wait' is often referred to as 'watch and worry'. There are a lot of strategies and people to talk to which can help make this period of waiting easier for you.

Who can I speak to while I am on 'watch & wait'?

Speaking with your GP or your specialist may help alleviate any concerns you have. You may even like to ask them for a referral to a psychologist or counsellor. Even though you will not be receiving active treatment when on 'watch and wait', you may like to ask for a referral to your nearest specialist haematology nurse who is usually based in an outpatient section of a hospital. These nurses have experience in helping people manage any feelings and worries at not being able to 'do anything' about your lymphoma.

Is there any support for people like me?

Organisations such as the Leukaemia Foundation have support groups (both face to face and over the telephone), where you can talk to people who are in the same situation as you.

The 'Talk Blood Cancer' website is an online discussion forum that provides a place where people can ask questions, share experiences, fears, ideas, knowledge and information with one another. You might find that using these types of support networks can help you to better cope with any emotions you are experiencing whilst on 'watch and wait'.