I was, 9 months ago, diagnosed with CLL. I have no symptoms apart from results of blood tests. I know I’m in the monitor and manage bracket but wondering what happens until I spot something. Do I just ignore the diagnosis and carry on as normal, should I be having check ups?
Sorry to ramble but I’m confused.
Dear Gigsybf16df,
Thanks for getting in touch and welcome to the online community, I hope you find it supportive. My name is Carla and I’m one of the Cancer information Nurses on the Macmillan Support Line.
I am sorry to read about your recent diagnosis of Chronic Lymphocytic Leukaemia (CLL). I can understand your feelings of confusion related to waiting for treatment, I am glad that you have reached out to talk about it.
Some people find it hard knowing that they have been diagnosed with leukaemia but are not going to have treatment straight away. Treatments for CLL, such as chemotherapy, can cause side effects and may affect your quality of life. Delaying this treatment can avoid side effects. Although CLL cannot be cured, you usually have long periods of time when it does not affect you and you have no symptoms.
Active monitoring is often referred to as ‘watch and wait’. You should be having regular check ups to monitor the CLL, which may include blood tests or physical examination to check for swollen lymph nodes.
In the first year of diagnosis, you will usually see the haematology consultant once or twice. If you develop any symptoms, you should let your team know as they will need to assess if it is appropriate to start your treatment.
If you have not had guidance on how often the team will monitor your bloods or review you, you can reach out and ask to speak to your haematologist or your haematology Clinical Nurse Specialist (CNS)
People can find it difficult emotionally to cope with being on active monitoring. I would encourage you to have a look at our forum for people affected by CLL, SLL and HCL forum.
I would also encourage you to have a look at the information and support provided by Blood Cancer UK. They have a range of self-help ideas, on how to look after your mental health while you are on active monitoring.
If you think you may find it helpful to chat things over in more detail with one of the nurses here on the support line, please do give us a call. We can often explain things better over a spoken call with the opportunity to ask questions.
I hope you find this information useful. Don’t hesitate to come back if you need anything.
Best wishes,
Carla, Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.
Ref: CC/HW
