I was diagnosed with CLL in January and am on Monitor and Manage. I’ve read that people have further blood tests in the first year of diagnosis. The only blood tests I’ve had were prior to my gall bladder removal (June ish). I’m unsure if I should have had ones specifically for CLL or am I worrying unnecessarily ?
Dear Gigsybf16df
Thank you for getting in touch with us at Macmillan Cancer Support. My name is Penelope and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.
I hope that you are keeping well following your chronic lymphocytic leukaemia (CLL) diagnosis and your gallbladder surgery. CLL often progresses very slowly so doctors usually wait until there are signs the CLL is progressing before suggesting treatment. Monitor and Manage is a way of keeping an eye on things. Our information on monitoring for CLL suggests that in the first year of being diagnosed, people will usually be seen once or twice. This would be different for everyone, however, so speak to your own haematology team for clarification. Blood tests taken in June may have been reviewed by the haematology team, but it would be helpful for you to understand if this was the case.
It is also important that you know what to expect in terms of monitoring frequency for your individual circumstances, and whether this will be done by the GP or the haematology team. If you have a contact number of a haematology nurse specialist or your consultant’s secretary, then do give them a call to find out more. If you do not have these contact numbers, then they may be on a letter you have received by post or electronically. Alternatively, you can call the hospital switchboard and ask to speak to the haematology secretaries or a nurse that supports people with CLL if there is one.
If you have had any new symptoms or concerns since your diagnosis, it is important to speak to your GP or haematology team as soon as possible. Many people also find it helpful to note down how they’ve been feeling in a symptoms diary. This helps you notice if anything changes and makes it easier to report any symptoms to your doctor. Blood Cancer UK has further general information on what to expect on active monitoring. They explain that tests you have and the length of time between your check-ups will depend on the type of blood cancer you have and how it’s affecting you.
Do speak to the haematology team for more information. If you would like to talk things through you can also contact us on the Macmillan Support Line on the number below.
Best wishes
Penelope
Macmillan 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: PN/VG
