CLL

Hi Keef,

Thanks for getting in touch with us. My name is Rachel and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

It’s good to see that your wife’s blood tests have been OK since she was diagnosed with CLL over 10 years ago. It’s completely understandable that you have questions now that her doctor has requested further tests. I’m glad you’ve reached out to us for further information about this.

There are several reasons for doing blood tests after a diagnosis of CLL such as the Full blood count your wife’s been having regularly to monitor her condition.

Genetic tests are usually performed at the point that a person may need treatment. They look for changes (abnormalities or mutations) in blood cells. CLL develops when genes controlling cell growth are damaged. Some damage happens during our life-time due to things such as ageing and the environment. In a small number of cases genetic abnormalities may be inherited, and you mention that your wife has a family history of Leukaemia.

There are several different genetic abnormalities that can lead to CLL. This is why it behaves differently in different people. Your wife’s genetic tests will help her doctors to understand which genetic abnormalities are present in her CLL cells and how it may respond to treatment.

The tests usually performed are Fluorescent in situ hybridisation (FISH) and DNA sequencing tests and they look for changes in 2 genes that are important in CLL, called p53 and IGHV. DNA sequencing is very complex, and it can take several weeks or longer for results to be available.

We understand that waiting for test results can be very stressful. As a charity we’re not linked to the NHS and don’t have access to medical records so we can’t give specific advice about your wife’s case. Her haematology team are best placed to do this and answer any questions you have. If she has a nurse specialist, they should be happy to talk to you both.

 In the meantime, you might like to take a look at our CLL forum on the online community, that can be a great place to share information and get support from others in a similar situation.

Blood Cancer UK and CLL Support Organisation are both UK charities that offer information and support to people affected by blood cancers, via their websites and support lines. You’re also welcome to give us a call on the Macmillan Support Line. Call free on 0808 808 0000 (7 days a week, 8am-8pm). We’d be very happy to hear from you.

Best wishes

Rachel, Cancer Information Nurse Specialist

Ref: RC/LR

Thanks for information.The fact that genetic testing is performed at the point when a person may need treatment is slightly worrying as her doctor said her fbc blood test was ok Since covid all her appointments have been on the phone
and she has not had a physical exam