Healthcare professionals

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Your medical team

You are likely to see a number of different people at your CLL clinic. It can be confusing to know who does what.

The multi-disciplinary team (MDT)

The team of medical specialists looking after you, known as an MDT, will vary in its membership and size, depending on where you go for your CLL care, and where you are on your CLL journey.

At diagnosis, you will be seen by a Consultant Haematologist. When you go for check-ups, you may see different members of the team. Later, if treatment starts, you will get to meet more members of the team. 

Members of the MDT are required to attend a meeting every week or fortnight to discuss the diagnosis and treatment options for the patients assigned to them.

Patients may have their cases referred to the MDT at any time when significant changes occur, and further treatment options need to be considered. The MDT will take into account your views and circumstances. The conclusions and recommendations of the MDT are shared with you at clinical appointments.

These are some of the members of an MDT:

• Consultant Haematologist A specialist in blood diseases, who will instigate investigations to obtain a diagnosis and who is responsible for patient treatment.

• Haematologist-oncologist A consultant who specialises in the treatment of blood cancers.

• Specialist Registrar (SpR) A doctor in training to be a consultant haematologist.

• Clinical Nurse Specialist (CNS) A nurse who assists the patient through staging and treatment, and with communications.

• Key Worker A member of the MDT, most often a CNS, allocated to a patient when treatment begins. The key worker liaises between the patient, MDT and other staff and helps the patient navigate the care system.

• Research Nurse This nurse ensures that patients who are eligible and might benefit from a clinical trial, are discussed at the MDT meeting.

• Radiologist This doctor is a specialist in diagnosing and treating disease using medical imaging techniques such as x-ray, computed tomography (CT), magnetic resonance imaging (MRI).

• Histopathologist This doctor analyses tissue samples and returns a diagnosis.

Other specialists, such as a clinical psychologist, or a dietitian, may be available to provide advice to the MDT and additional care to patients.

Questions to ask

As you cope with your CLL and treatment, you need to have honest, open discussions with your doctor. You should feel comfortable asking about anything, no matter how small it might seem. Here are some questions you might want to ask. Nurses, social workers and other members of the treatment team may also be able to give you answers. Be sure to write down any questions you have.

Taking another person with you and/or recording your conversation, with the agreement of the person you are consulting, can be very helpful.

When told you have CLL

For many people, a diagnosis of CLL is unexpected, even a shock. Most will need time for the news to sink in before they know what questions to ask. You can request an appointment at the CLL clinic soon after hearing your diagnosis to ask questions. Here are some questions you might like to ask:

• What is CLL?
• What stage (risk group) am I?
• How is CLL likely to affect my day-to-day life?
• Will I die from it?
• Can I have a copy of my test results? Will you explain them to me?
• What further tests will I need to have and when?
• When do you decide to treat? Why not start treatment straight away?
• What can I do to help myself?
• Where can I go for further information and support?

As for many patients, treatment may not be considered necessary or advisable for you at the stage of diagnosis. You will be monitored to see how your CLL is progressing. This is often referred to as “watch and wait”, however, ‘active monitoring’ or ‘medical observation’ may be better terms to use. It’s up to you!

When deciding on a treatment plan

This is a key decision for you and the team treating you. It’s reasonable for the patient to need sufficient time to discuss the relevant issues with your consultant and CLL team. Here are some questions you may wish to ask at successive appointments:

• What tests will I have to help determine what the treatment options are in my case?
• What’s involved in these tests, and what do they tell you?
• What are my options for treatment?
• How do these treatments work?
• What experience do you and your team have of these treatments? (e.g. number of patients per annum, how well the treatment is tolerated, remission, i.e. no sign of the CLL in a scan or other examinationfollowing treatment…)
• Am I eligible for any clinical trials? How do I find out more about them?
• What is the best place for me to be treated? Why’s that?
• What treatment plan do you recommend for me and why?
• How do I go about getting a second opinion?
• Do I have a key worker? If so, name and contact details.

As you narrow down the options, you may want to come back for more detailed information:

• What are the possible side effects of this treatment, both in the short term and long term?
• What can be done to relieve these side effects?
• How might this treatment affect my life, now and in the future? (work, travel, sex life, fertility, lifestyle?)
• How is the treatment administered and over how long a period?
• What evidence is there of the effectiveness of this treatment?
• How would you sum up the pros and cons of the treatments I am considering?
• Are there any support services I can contact about living with CLL?

When starting treatment

These are some of the concerns you may have when you are about to start treatment:

• Who will be part of my healthcare team, and what does each member do?
• If I’m worried about the costs of medical care, who can help me?
• Which support services are available to my family and me?
• Whom should I call with questions and problems?
• Can I have a copy of my care plan?

While you are on treatment

Good communication with the team treating you is vital, both to them and to you.

Be sure to raise anything which is bothering you, for instance:

• What side effects should I report immediately to you?
• Is there a direct emergency number to call if I am concerned? Is this a 24hr service?
• How about contacting you and your team? Who do I call, for what, and when and on what number? How about email contact?
• What is the role of my key worker? And who is my key worker, their working hours and the contact number to call.
• What side effects can be expected? And how should I deal with them?
• How will you and I know if the treatment is working?
• What counselling support services are available to me if I start to feel overwhelmed or depressed?

After your treatment

Some key questions to ask at this stage are:

• What follow-up can I expect post treatment?
• When can I return to work?
• What is the chance of the CLL coming back? Should I watch for specific signs and symptoms?
• How do I get a treatment summary and survivorship care plan?