1. Initial investigation and referral

Your general practitioner (GP) will assess your symptoms (for example, a lump or mass), conduct a physical examination and arrange blood tests if needed.

Your GP may decide to wait for up to four weeks to observe any changes in your symptoms.

Your GP should also discuss your needs (including physical, psychological, social and information needs) and recommend sources of reliable information and support.

If lymphoma is suspected, you will be referred to a specialist for further testing. Your GP will provide the specialist with information about your medical history, whether there is a history of cancer in your family, and results of the initial tests.

You may have one or more of these tests:

  • Ultrasound: This uses high-frequency sound waves to make an image of a person's internal body structures.
  • Biopsy: A small sample of tissue is taken from the area of concern to examine under a microscope.
  • Computed tomography (CT) scan: Computer technology and x-rays are used to create detailed images of the body.

It can be helpful to bring a family member or friend with you to your appointments.

2. Diagnosis and staging

The specialist will discuss your test results with you and options for further testing. You should have a biopsy if you haven’t already. This is to find out whether cancer is present and, if it is, its stage of development and if it has spread.

Further tests you may have:

Positron emission tomography (PET) scan

This produces a three-dimensional colour image that may show where cancers are located. A small amount of radioactive material is injected and the whole body is scanned.

It can be helpful to contact cancer peer support groups and support groups for carers.

Here is a list of questions to ask your doctor.

3. Treatment

To ensure you receive the best care, your specialist will arrange for a team of health professionals to plan your treatment based on your preferences and needs.

The team will be made up of health professionals who have experience managing and supporting a person with lymphoma. Your specialist will tell you when the team will be discussing your case.

Your team should discuss the different treatment options with you including the likely outcomes, expected timeframes, possible side effects and the risks and benefits. Your doctor may also suggest you consider taking part in a clinical trial. You might want to ask for more time before deciding on your treatment.

Let your team know about any complementary therapies you are using or thinking about trying. Some therapies may not be appropriate, depending on your medical treatment.

There are a number of ways to treat these lymphomas. In some cases, more than one type of treatment could be used to get the best outcome.

Treatment options:

Systemic chemotherapy

Systemic chemotherapy is the most common treatment.

Radiation therapy 

Radiation therapy (also called radiotherapy) may benefit patients when combined with chemotherapy.

Autologous stem cell transplant

Autologous stem cell transplant is suitable for patients with recurrent lymphomas who are having high-dose chemotherapy. It involves collecting stem cells from your blood stream and storing them until after you have chemotherapy, when they are transplanted back into your bloodstream with the aim of restoring normal blood cell numbers.

In some cases an allogeneic stem cell transplant (using a suitably matched stem cell donor) may be considered.

For more information about treatment and treatment side effects ask your doctor or visit our treatment section

Your doctor should discuss your needs with you during and after treatment (including physical, psychological, social and information needs) and may refer you to another service or health professional for different aspects of your care.

4. After treatment

After treatment is completed, your doctor should provide you with a treatment summary which details the care you received, including:

  • diagnostic tests performed and their results
  • types of treatment used and when they were performed
  • treatment plans from other health professionals
  • support services provided to you.

You and your GP will receive a follow-up care plan that tells you about:

  • the type of follow-up that is best for you
  • care plans for managing any side effects of treatment, should they occur
  • how to get specialist medical help quickly if you think the cancer has returned or got worse.

Your doctor should:

discuss your needs with you and refer you to appropriate health professionals and/or community organisations, if support is required

provide information on the signs and symptoms to look out for that might mean a return of the cancer

provide information on prevention and healthy living

5. If cancer returns

Sometimes lymphomas can come back after treatment. This is why it is important that you have regular check-ups. Usually this will be detected at your routine follow-up appointments or if you notice symptoms are coming back.

6. Living with cancer

Side effects: 

Some people experience side effects (for example, tiredness) that continue beyond the end of treatment. Sometimes side effects don’t begin until months after treatment has finished. For more information about side effects ask your doctor.

Advance care plan:

Your doctor may discuss with you the option of developing an advance care plan. An advance care plan is a formal way of setting out your wishes for future medical care. For more information about advance care planning ask your doctor or visit advancecareplanning.org.au.

Palliative care:

This type of treatment could be used at different stages to help you with pain relief, to reduce your symptoms or help improve your quality of life. For more information about palliative care ask your doctor or visit palliativecare.org.au.

7. Questions of cost

There can be cost implications at each stage of the cancer care pathway, including costs of treatment, accommodation and travel. There can be substantial out-of-pocket costs if you are having treatment in a private health service, even if you have private health insurance.

You can discuss these costs with your doctor and/or private health insurer for each type of treatment you may have. If you are experiencing financial difficulties due to your cancer treatment you can contact the social worker at your local hospital.

For more information visit costs of treatment.

For more information about accommodation and travel costs visit our support section.

8. Further support

Lymphoma support

For more information or support call the Leukaemia Foundation on 1800 620 420 or visit leukaemia.org.au or Lymphoma Australia on 1800 359 081 or visit lymphoma.org.au

Also, specially trained staff at Cancer Council can answer your questions about the effects of cancer, explain what will happen during treatment and link you to support groups and other community resources. Call Cancer Council 13 11 20.

If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50.

For support and advice for carers, call the Carers Association on 1800 242 636.

More support options

Australian Cancer Survivorship Centre
Has general and tumour-specific information, primarily focused on the post-treatment survivorship phase
• Telephone: (03) 9656 5207
• Website: www.petermac.org/cancersurvivorship

beyondblue: the national depression initiative
Information on depression, anxiety and related disorders, available treatment and support services
• Telephone: 1300 22 4636
• Website: www.beyondblue.org.au

National Health Services Directory
A directory providing information on local hospital and community services
• Website: www.nhsd.com.au

Cancer Australia
Information on cancer prevention, screening, diagnosis, treatment and supportive care for Australians affected by cancer, and their families and carers
• Telephone: 1800 624 973
• Website: www.canceraustralia.gov.au

NEMICS A common path: Lymphoma
Videos offering support and advice from people who have been through cancer.
• Visit: www.youtube.com/c/ACommonPathCancersupportandadvice

Care Search: Palliative Care Knowledge network
Information for patients and carers on living with illness, practical advice on how to care, and finding services
• Telephone: (08) 7221 8233
• Website: www.caresearch.com.au

The Leukaemia Foundation
Provides information, education and support programs, emotional support, practical assistance, transport and accommodation for people with lymphoma, their families and friends
• Telephone: 1800 620 420 (Monday to Friday, 9.00 am – 5.00 pm)
• Website: www.leukaemia.org.au

Clinical versions of the optimal care pathways have been developed for clinicians and general practitioners here.