It’s normal to feel anxious in the months, weeks or days leading up to your next appointment, but knowing what to expect from these check-ups can help. If you do feel upset or worried, there’s plenty of support available to you and those close to you.
Take a look at these top tips for dealing with the emotional impact of watch and wait, or call our Support Line if you’d like to talk to someone in person
Where will I go for my appointments?
Some people will go to a clinic or hospital to see a doctor specialising in blood cancer (a haematologist / haematology consultant) for their appointments, while others will visit their local GP surgery. It’s not unusual for people with chronic lymphocytic leukaemia (CLL) to visit their GP for their appointments, for example. The specialist you see when you’re diagnosed will explain whether you’ll continue to see them or your GP.
How often will I see my doctor?
The length of time between your check-ups will depend on the type of blood cancer or related condition you have and how it is affecting you. If you develop new symptoms or your blood counts change, your doctor may decide to shorten the length of time between your appointments, or recommend that you start treatment.
You can use the table below as a rough guide, but you should speak to your doctor to find out exactly how often your check-ups will be.
|Type of blood cancer or related condition||Typical length of time between appointments|
|Chronic lymphocytic leukaemia (CLL)||You’ll be seen at least twice within the first year, although some people will be seen every three months. After this, if your condition remains stable, your consultant may decide to reduce your visits to once a year.|
|Hairy cell leukaemia (HCL)||People on watch and wait for HCL are usually seen every three to 12 months.|
|Large granular lymphocytic leukaemia (LGLL)||Usually the same as for CLL.|
|Low-grade non-Hodgkin lymphoma (low-grade NHL)||People on watch and wait for low-grade NHL are typically seen every three to four months.|
|Asymptomatic (or 'smouldering') myeloma||People on watch and wait for asymptomatic myeloma are usually seen every three months.|
|Myelodysplastic syndromes (MDS)||Some people with MDS only need monitoring once a year, while others visit their doctor every few weeks. Your doctor will base their recommendation on your symptoms and blood counts.|
|Myeloproliferative neoplasms (MPN)||People on watch and wait for MPN are typically seen every three to six months.|
|Monoclonal gammopathy of undetermined significance (MGUS)||You’ll be seen every six to 12 months if you're on watch and wait for MGUS and your paraprotein levels are low. Your appointments will be more often if these levels are higher.|
What will happen at my appointments?
At each appointment your consultant or GP will check to see if you’ve developed any new symptoms and run some tests. Below is a more detailed description of what you can expect, depending on the type of blood cancer or related condition that’s being monitored.
Chronic lymphocytic leukaemia (CLL)
If you’re put on watch and wait for CLL, at each appointment your doctor will check for new symptoms, such as swellings on your lymph nodes, liver or spleen. They’ll also run a full blood count to check the number of cells in your blood, test your kidney and liver function and may carry out other routine blood tests.
Hairy cell leukaemia (HCL)
If you’re diagnosed with HCL but haven’t experienced any troublesome symptoms and your blood counts aren’t too low, your doctor may recommend a watch and wait approach. Your check-ups will be very similar to those for CLL (see above).
Large granular lymphocytic leukaemia (LGLL)
About half of all patients diagnosed with LGLL won’t need treatment straight away, and are instead monitored with regular appointments. These will involve the same checks as for CLL (see above).
Low-grade non-Hodgkin lymphoma (low-grade NHL)
There are lots of types of low-grade NHL, but the most common is follicular lymphoma. If you’re put on watch and wait for this, your check-ups will be very similar to those for CLL (see above).
Your doctor may also want to perform or repeat a CT scan of your chest, stomach and pelvis within the first two to three years that you’re on watch and wait, especially if you have new symptoms. After that, if your condition remains stable, you’ll have these scans less often.
If you’re put on watch and wait for another form of low-grade NHL, your doctor will be able to tell you more about what to expect at each appointment.
Myelodysplastic syndromes (MDS)
Like low-grade NHL, there are different types of MDS. If you’re put on watch and wait for one of these syndromes, at your appointments your doctor will run a full blood count and check for new symptoms, such as shortness of breath (a symptom of a low red blood cell count) or persistent infections (often the result of a low neutrophil count).
Myeloproliferative neoplasms (MPN)
Like MDS, there are several different types of MPN. These include polycythaemia (PV), essential thrombocythaemia (ET) and myelofibrosis (MF). If you’re put on watch and wait for one of these conditions, your doctor will check your full blood count and check for new symptoms, such as a swollen spleen, at regular appointments.
Monoclonal gammopathy of unknown significance (MGUS) or asymptomatic (or 'smouldering') myeloma
If you're on watch and wait for MGUS or asymptomatic myeloma, at each appointment your doctor will check for signs or symptoms that suggest your condition might be progressing or developing into myeloma. This usually involves tests to check your full blood count, measure the amount of calcium in your blood, detect whether there are any paraproteins or free light chains in your blood, and to see how well your kidneys are working.
Getting the most out of your appointments
If possible, it’s a good idea to bring someone with you (like a partner, family member, friend or carer), so they can write things down while you chat to the doctor, or ask questions you might not think of. Appointments can sometimes be stressful and overwhelming and often the support of someone you know can help.
Don’t worry if there isn’t anyone who can come with you, as there’s often a nurse who can sit with you and offer you support while you see the doctor.
You may also find it helpful to bring a notebook with you so you can jot down notes. Between your appointments, you could use this notebook to write down any new symptoms you experience, medication you’re taking or questions you have, so you have this information to hand when you see your doctor.
If you'd like somewhere to write these things down, you can download or order our booklet: My diary
Questions to ask your GP or consultant
You might find it helpful to print out this list of questions and take it with you to your next appointment. You can ask your doctor to write down the answers, so you have them to hand whenever you need them.
- Why is watch and wait recommended for me?
- What are my other treatment options at this stage?
- What tests will I need, and how often will I have them?
- Where will I need to come for my appointments?
- What signs and symptoms should I look out for?
- Who should I contact if I feel unwell or develop new symptoms?
- Should I take any precautions while I’m on watch and wait (e.g. Do I need the flu jab? Should I avoid the shingles vaccine or other live vaccines? Could my condition affect any unrelated routine operations or procedures I might need)?
- How will I know if I need to start treatment and what will this involve?
- What is the best outcome I can hope for?
Getting your results
Some test results may be ready the same day, while others may take a few days or sometimes weeks, but your doctor will tell you when you can expect yours. Usually, you’ll need to wait at least 24 hours for the results to a full blood count (FBC), liver function or urea and electrolyte test – though if your doctor needs to check your blood count urgently, you’ll get your FBC results straight after the test. You might need to wait a week for the results to a serum free light chain test (which tests for free light chains in the blood) or a urine sample to test for free light chains in your urine.
You may find that your doctor arranges for you to have some or all of your tests at your local GP surgery, hospital or clinic a few days before your check-up, so you can then meet with your consultant or GP to discuss the results once they’re ready.
Your doctor will talk you through the results and can answer any questions you have. If the length of time between your appointments is going to change, they will explain the reasons for this. Equally, if they recommend that you need to start treatment, they will discuss your treatment options with you.
If your doctor recommends that you start treatment and you'd like to know more about the choices you might be asked to make, you can download our fact sheet: Treatment decisions