If you have a slow-growing (indolent) lymphoma or CLL, you may not need treatment. Instead, your doctor may choose a watch and wait approach.
The term watch and wait can be a little misleading though. It is more accurate to say “active monitoring”, because your doctor will actively monitor you during this time. You will see the doctor regularly and have blood tests and other scans to make sure you stay healthy, and your disease is not getting worse.
If your disease does get worse you may start treatment.
Understanding watch and wait (active monitoring)
Watch and wait may be the best option for you, if you do not have many symptoms or risk factors that need urgent treatment.
It can be difficult knowing you have a type of cancer, but are not doing anything to get rid of it. Some patients even call this time “watch and worry”, because it can be uncomfortable not doing anything to fight the cancer. But, watch and wait is a great way to start. It means your own immune system is fighting the cancer, and doing a good job keeping it under control. So in fact, you are already doing a lot to fight the cancer, and doing a really good job at it. If your immune system is keeping it under control, you will not need extra help to fight the cancer.
Extra medicine that can make you feel quite sick or cause long term side effects, will not help at this point. Research shows there is no benefit to starting treatment early, if you have a slow-growing lymphoma or CLL and no troublesome symptoms. This type of cancer will not respond well to current treatment options. Your health will not be improved, and you will not live longer by starting treatment earlier. If your lymphoma or CLL starts to grow more, or you start to get symptoms from your disease, you might then start treatment.
Many patients may need to have active treatment such as chemotherapy and immunotherapy at some time though. However, some patients with indolent lymphomas never require treatment. After you have had treatment, you may again go on to watch and wait.
Prof Judith Trotman, Haematologist, Concord Hospital, Sydney
Why is watch and wait used?
In most cases Indolent (slow growing) lymphoma is not curable. This means that you will live with your disease for the rest of your life. But many people live a long and healthy life even with an indolent lymphoma or CLL.
You may have times where you are on watch and wait for awhile, then some treatment, and then back to watch and wait. It can be a bit of rollercoaster. But, if you understand that watch and wait is sometimes as good, or event better than active treatment with medications in some cases, it can be easier to cope with. Studies show that patients who start on ‘watch and wait’, live just as long as people who have started on treatment earlier.
The benefit of waiting to treat lymphoma or CLL, is that you will not have unwanted side effects of medications used to treat lymphoma. It also means you will have more options, if you do need to have active treatment in the future.
Who may be treated with the ‘watch and wait’ approach?
Watch and wait can be the best option for patients with indolent lymphomas such as:
- Follicular lymphoma (FL)
- Marginal zone lymphomas (MZL)
- Chronic lymphocytic leukaemia (CLL) or small lymphocytic lymphoma (SLL)
- Waldenstroms macroglobulinemia (WM)
- Cutaneous T-cell lymphoma (CTCL)
- Nodular lymphocyte depleted Hodgkin lymphoma (NLPHL)
However, watch and wait is only appropriate if you are not having troublesome symptoms. Your doctor may choose to offer you active treatment if you experience the following symptoms:
- B symptoms – which include drenching night sweats, persistent fevers & unintended weight loss
- Problems with your blood counts
- Organ or bone marrow damage because of the lymphoma
What does watch and wait involve?
You will be actively monitored while you are on watch and wait. You will likely see your doctor every 3-6 months, but your doctor will let you know if it needs to be more or less than this. Your doctor may order any of the following tests to make sure you are still well, and that your disease is not getting worse.
Tests may include:
- A blood test to check your general health
- A physical exam to check if you have any swollen lymph nodes or signs of progression
- A physical exam & medical history
- You will have your Blood pressure, temperature, and heart rate checked (these are often called vital signs)
- Your doctor will ask you if you have had any B symptoms
- You may also be asked to have a CT scan or a PET. These scans show what is happening inside your body
If you have any concerns in between your appointments, please contact your treating medical team at the hospital or clinic to discuss these. Do not wait until the next appointment as some concerns may need to be managed early.
It is important to remember that watch an wait is a standard way to manage indolent lymphoma’s and CLL. If you find the ‘watch and wait’ approach distressing, please talk to your medical team about it.