Chronic lymphocytic leukaemiaYour guide to best cancer care

It can be overwhelming after being told that you have or may have chronic lymphocytic leukaemia (CLL). A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience.

Information and support

If you need additional information or would like support, you can visit the leukaemia page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

To speak with an experienced health professional who can provide you with disease-specific information, answer questions, talk through concerns and connect you to blood cancer support groups, call 1800 620 420 or visit the Leukaemia Foundation page. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments and financial assistance.

For education, support and advocacy for lymphoma and CLL, call 1800 953 081 or visit the Lymphoma Australia page. Lymphoma Australia nurses can help patients and their families understand their diagnosis and treatment options, navigate the lymphoma journey and connect patients with other support networks.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Symptoms

CLL is often picked up during routine blood tests by your general practitioner (GP) or other primary care physician for unrelated conditions; most people don’t have any symptoms when they are diagnosed. When present, symptoms can include painless swelling of lymph nodes (often around the neck), unexplained weight loss, feeling extremely tired to the point where you can’t do your normal everyday activities, frequent infections or shingles.

Your GP should do a check-up to see if they can find the reason for abnormal blood test results or symptoms you might have.

Referrals

If your GP thinks you may have CLL, you will be referred to a haematologist or medical oncologist (specialist) at a public hospital or in private practice for more tests. Haematologists are doctors highly trained in conditions that affect the blood and bone marrow.

You can bring a family member or friend with you to your appointments. Let your doctor know what is most important to you in a specialist (e.g. that they specialise in CLL, cost, location, bedside manner, expertise).

Timeframes

Your specialist appointment should usually happen within about two weeks. If your GP finds that you have severely low platelets (severe bleeding), severely low red blood cells (severe anaemia), or your lymph nodes are very large, you should be referred to a haematologist within 72 hours.

If you can’t get an appointment within this timeframe, follow up with your GP.

Travel to access tests, treatment and care

You may have to travel to see a specialist, undergo tests or access treatment, especially if you live in a rural or regional area. In some cases, you may have to leave home for an extended period of time. Accommodation and transportation support services are available and it is encouraged to have family support with you whilst you undergo treatment.

Mental health and emotional well-being

A blood cancer diagnosis can affect your mental and emotional well-being. Patient support organisations, your GP or another health professional (e.g. a psychologist or social worker) can help you process your diagnosis and develop strategies to cope. They can help you access a mental health treatment plan if required

Helpful tips

Ask your GP to recommend trusted sources of information and support – you can share these with your family and friends too.

Talk to your GP/specialist about how to manage other health conditions you may have during your blood cancer treatment and let them know if you have any concerns.

It’s a good idea to keep a written diary or digital record of treatment details and appointments with your GP and specialists.

You can ask permission to record your appointments. It’s also helpful to bring a list of questions and ask for a written treatment plan.

Don’t ignore new signs and symptoms. Alert your GP or specialist. Trust yourself. It’s OKAY to be persistent.

Your haematologist/specialist will do more tests to see if you have CLL, see how advanced it is and help determine whether treatment is needed, and if so, the best treatment for you. You may have one or a combination of these treatments:

Timeframes

You should generally have results back within two weeks.

CLL is usually slow growing, so unless you have symptoms or there is evidence that your CLL is getting significantly worse, your specialist will generally recommend a ‘watch and wait’ approach rather than immediately starting treatment. This will involve monitoring your CLL with regular blood tests. Watch and wait are recommended as starting treatment before there are symptoms or signs that the disease is worsening does not improve how long you live or your quality of life.

If and when you need treatment, your specialist will talk to you about your options. You may be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.

You might have one or a combination of these treatments:

Chemotherapy. Drugs are used to kill cancer cells and stop the cancer growing.

Targeted therapy. This uses drugs to attack specific features of cancer cells to stop the cancer growing.

Immunotherapy. This is a type of cancer treatment that helps the body’s immune system fight the cancer.

Allogeneic bone marrow transplant. This replaces the blood-forming cells that have been destroyed during intensive chemotherapy or radiotherapy. Stem cells are collected from the blood of a suitable donor and put into your bloodstream through a drip into a vein. This is only used in rare cases and will not be the first treatment used.

Radiation therapy. This uses x-rays to kill cancer cells and stop the cancer growing. This may be used to treat large/ obstructive lymph nodes or enlargement of the spleen.

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a cancer experience) are also available.

Fertility and sexual health

Blood cancer and blood cancer treatment may cause fertility problems. This will depend on age, the type of blood cancer and the treatment received. If this is relevant, get advice from your treating team about contraception before, during and after treatment. Discuss having children whilst undergoing treatment and the need for a referral to a fertility specialist and options for fertility preservation before starting treatment.

Diagnosis and treatment may affect your sex life or overall sexual health. For support and, if necessary, referral to counselling services, contact the Leukaemia Foundation on 1800 620 420 or visit the Leukaemia Foundation’s page on relationships and sex.

Timeframes

Treatment for CLL is rarely urgent and may be managed by a period of close observation without active treatment. This is known as ‘watch and wait’. By keeping an eye on your symptoms and test results, your specialist will determine when active treatment may be needed. Once the decision for active treatment is made, it should generally start between two to four weeks.

You can ask for more time to think about your treatment options.

You can ask your GP for a referral to another specialist for a second opinion.

Recovery

Blood cancer treatment can cause physical and emotional changes.

Follow-up care plan

Your healthcare team will work with you to make a plan for you and your GP. This plan will explain:

• who your main contact person is after treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with side effects of treatment
• how to get help quickly if you think the cancer has returned or is worse

Many people worry that the cancer will return. Your specialist and healthcare team will talk with you about your needs and can refer you to other healthcare professionals and community support services.

Other information you may get:

• signs and symptoms to look out for if the cancer returns
• late effects of treatment and the specialists you may need to see
• how to make healthy lifestyle choices to give you the best chance of recovery and staying well

For more information, visit After Cancer Treatment.

In most cases, CLL will eventually come back or start growing again after treatment, but it is usually gradual, and you may not develop symptoms. This is known as relapsed or progressive disease. It’s important to know that developing relapsed disease does not necessarily mean you will need immediate treatment.

If you don’t have symptoms, your doctor may recommend ‘watch and wait’ instead. If you do need treatment, options will depend on the features of the disease, how it was managed before and your current preferences.

Options may include one or more of:

• targeted therapy
• chemoimmunotherapy
• taking part in a clinical trial where you may try a new treatment
• an allogeneic stem cell transplant

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

Decisions about cost

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.