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Your prognosis means the likely course of your medical condition. CLL behaves very differently in different patients. Prognostic factors cannot predict time to treatment, infection rates, survival etc. in each individual, but you may find it helpful to know what the possible outlook could be for you.
If you want to know the results of tests that can tell you and your doctor about your future outlook with CLL, you may need to ask them. Your consultant haematologist and health care team are the best people to ask. You’ll find it useful to inform yourself first about prognostic factors. This will help you, and the doctor, determine the level of information you are seeking. Not everyone wants all the details.
Only you, as the patient, can ask about your prognosis; those close to you cannot get this information without your permission. Your prognosis will change if you have treatment and according to how well you respond to it.
CLL generally progresses very slowly, and for some patients, survival can be measured in decades.
About one-third of patients will never need treatment. A second third will eventually need treatment. The remaining third require treatment at or shortly after diagnosis.
Staging, described under ‘Diagnosis’, will be a key indicator of how your CLL is progressing. A low stage usually does not require treatment, whereas a high stage usually does.
The following are some of the factors taken into consideration when treatment may be approaching:
This is measured at every CLL appointment with your doctor. If your absolute lymphocyte count (ALC) takes more than 12 months to double, you have a better outlook than those whose count doubles in less than 12 months. But lymphocyte counts may fluctuate, sometimes dramatically, due to infection or stress, so caution is needed in interpreting this data.
For newly diagnosed patients, a range of laboratory tests on a blood sample will give you a broad picture of how your CLL is likely to behave. Not all tests are routinely funded by the NHS.
None of the tests are strictly essential at diagnosis, whereas they become essential if treatment is being considered.
When considering treatment, you should expect as a minimum FISH for 17p and sequencing for TP53. It can be useful for some patients to be tested for IgHV. Discuss this with your consultant. More information on these tests is given below.
Some CLL centres have the facility for tests on-site, and all hospitals have links to centres where tests can be performed.
This is a test for chromosomal abnormalities, which about three-quarters of CLL patients have in their CLL cells. These abnormalities frequently change the expression or function of molecules that result in increased cancer cell growth or survival.
Each chromosome has a short arm called ’p’ and a long arm called ‘q’. The four most common abnormalities in CLL are 17p-, 11q-, +12 and 13q-. ‘-‘ means a bit of the chromosome is missing (a deletion). ‘+’ means there is an extra copy of the chromosome (a trisomy).
13q deletion is associated with a good prognosis. +12 is of neutral prognostic significance. 17p deletion, also known as p53 deletion, is associated with a more rapid disease progression and a poorer response to chemotherapy, so you will be offered an alternative treatment. The negative significance of 11q is no longer seen with some of the current treatment options.
CLL patients with unmutated IgHV genes have a significantly less good prognosis with conventional chemoimmunotherapy than those with mutated IgHV genes.
For patients whose CLL has already progressed to requiring treatment, the most useful prognostic tests are FISH analysis for 17p deletion and sequencing for TP53.
These tests should always be carried out prior to treatment, as some treatments will be less effective, giving shorter remission rates, than other, more appropriate treatments.