Low-grade lymphomasYour guide to best cancer care

It can be overwhelming after being told that you have or may have low-grade lymphomas. 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.

There are several types of low-grade (also known as indolent) lymphomas. This guide covers follicular lymphoma, marginal zone lymphoma and mantle cell lymphoma.

Information and support

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

For more information about low-grade lymphoma, visit the Leukaemia Foundation website. 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. 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 chronic lymphocytic leukaemia, call 1800 953 081 or visit the Lymphoma Australia webpage. 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.

More information is available in the ‘Resource’ section of the optimal care pathway for low-grade lymphomas.

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

Symptoms

Your general practitioner (GP) or other primary care physician will do a check-up to see if they can find out what is making you unwell. They will ask about any symptoms you might be having such as enlarged lymph nodes, fever, drenching night sweats, unexplained weight loss or frequent infections.

Initial tests you may have:

Referrals

If your GP thinks you may have a low-grade lymphoma, 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 blood and bone marrow

You can bring a family member or friend with you to your appointments.

Timeframes

The timing of your specialist appointment will depend on the initial results of tests performed by your GP. For some people with low-grade lymphoma an urgent appointment is required, but for many others an appointment within four weeks is appropriate.

If you can’t get an appointment within these timeframes, 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. Accommodation and transportation support services are available, and it is encouraged to have family support with you whilst you undergo treatment.

See further information on Leukaemia Foundation’s accommodation and transport support by visiting their accommodation services page and transport services page.

Mental health and emotional well-being

A blood cancer diagnosis can affect your mental and emotional well-being. Many people being treated for a blood cancer experience a range of feelings and it is not uncommon to feel low, depressed, or anxious. Patient support organisations such as the Leukaemia Foundation or Cancer Council, your GP, or another health professional such as a psychologist or social worker can help you develop strategies to cope. They can help you access a mental health treatment plan if required.

Helpful tips

Let your doctor know what is most important to you in a specialist (e.g., that they specialise in ALL, cost, location, bedside manner, expertise).

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 any 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 the GP and specialists. You can ask permission to record appointments. It’s also helpful to bring a list of questions and ask for a written treatment plan. This can be an important source of information for later in life.

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

The haematologist/specialist will do more tests to see if you have a low-grade lymphoma, to check how advanced it is and to help determine the best treatment for you. This process of working out if you have a medical problem is called making a diagnosis.

You might have one test or a mix of tests:

Your specialist may suggest other imaging tests depending on the type of lymphoma suspected.

These tests will give the specialist more information about the glioma, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.

Timeframes

You should generally have results back within two weeks.

Your specialist will talk to you about your treatment options for low-grade lymphoma. 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. Your doctor may also recommend a ‘watch and wait’ approach to monitor your low-grade lymphoma before starting treatment.

You might have one treatment or a mix of 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.

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, often delivered through a multidisciplinary team that may include nurses, pharmacists, psychologists, physiotherapists and dietitians.

Timeframes

Your low-grade lymphoma 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/if active treatment is needed. Once the decision for active treatment is made, it should generally start within two to four weeks.

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

For more information on clinical trials, visit the Australian Cancer Trials page or search the Australian New Zealand Clinical Trials Register. Participation in a clinical trial is voluntary, and you can choose not to participate in a clinical trial or withdraw from a clinical trial at any point if you wish.

For relationship support and, if necessary, referral to counselling services, visit the relationships and sex page on Leukaemia Austalia. Canteen Australia also provides some helpful information on fertility options after a cancer diagnosis.

You can ask for more time to think about your treatment options, and you can ask your GP for a referral to another specialist for a second opinion.

Recovery

After initial treatment you may see yourself as ‘living with lymphoma’ rather than as a ‘blood cancer survivor’, as you may require multiple courses of treatment over your lifetime. Survivorship care generally involves close follow-up with your specialist to monitor for relapse or secondary cancers and complications from treatment.

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.

After initial treatment you may see yourself as ‘living with lymphoma’ rather than as a ‘blood cancer survivor’, as you may require multiple courses of treatment over your lifetime. Survivorship care generally involves close follow-up with your specialist to monitor for relapse or secondary cancers and complications from treatment.

Survivorship care plan

Your specialist and 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 initial treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with potential side effects of treatment
• how to get help quickly if you think the blood cancer has returned or is worse
• how to look after your overall health and wellbeing
• what healthcare and community support services are available to you and how to access them

Many people worry that their blood cancer will return. Your specialist and healthcare team will talk with you about your needs and can refer you to other health professionals and community support services. Other information you get might be about:

• signs and symptoms to look out for
• the side 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

In most cases, low-grade lymphomas cannot be cured even with the best initial treatment. But prolonged survival through controlling disease and disease-related symptoms is frequently the case for low-grade lymphomas.

Many patients with low-grade lymphomas die from other ageing-related causes. 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
• a 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.

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.