Hodgkin and diffuse large B-cell lymphomaYour guide to best cancer care

It can be overwhelming after being told that you have or may have large B-cell lymphoma or could have Hodgkin or diffuse large B-cell lymphoma. 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, you can look for the Understanding Hodgkin Lymphoma booklet and Understanding Non-Hodgkin Lymphoma booklet. For more support, call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

For information about leukaemia and support from a healthcare professional, call 1800 620 420 or visit the Leukaemia Foundation website. For information about lymphoma and support from a healthcare professional, call 1800 953 081 or visit the Lymphoma Australia website.

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

Symptoms

Your general practitioner (GP) should do a check-up to see if they can find what is making you unwell. They will ask about any symptoms you might be having. For example, you might have a lump or growth.

Your GP might decide to wait and watch what the lump or growth does. You will visit your GP again within six weeks.

Initial tests you may have

Referrals

If your GP has concerns, you will be referred to a specialist (haematologist) at a public hospital or in private practice for more tests. Haematologists are doctors who are highly trained in lymphoma and other conditions that affect the blood.

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

Timeframes

Your GP should refer you to a haematologist within 72 hours if Hodgkin or diffuse large B-cell lymphoma is likely or within four weeks if your test results are not too concerning. If you can’t get an appointment within this time, follow up with your GP.

The specialist will do more tests to see if you have Hodgkin or diffuse large B-cell lymphoma. 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:

An excision biopsy will be done if you haven’t already had one.

These tests will give the specialist more information about the cancer, 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

Results should be available within two weeks from when you have the tests.

There are several ways to treat Hodgkin or diffuse large B-cell lymphoma. Your specialist will talk to you about your treatment options.

You will 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 treatment or a mix of treatments:

Chemotherapy uses drugs to kill cancer cells and stop the cancer growing.

Autologous stem cell transplant (ASTC). You might need a lot of chemotherapy or radiation therapy to treat your Hodgkin or diffuse large B-cell lymphoma if this is not your first episode of lymphoma. This is called a high dose therapy. The high dose therapy might kill some of your bone marrow and stem cells. This is a known side effect of treatment. You need these cells to make blood. An ASTC is where some of your blood is taken before you have chemotherapy. Cells called stem cells are taken out of this blood. Stem cells are cells that help the body grow new healthy cells. When your chemotherapy is finished, the stem cells that were collected are injected back into your bloodstream through a drip into a vein. You might have an ASTC to get your bone marrow and stem cells to grow back.

Allogeneic stem cell transplant (allo-SCT). An allo-SCT is where stem cells are collected from the blood of a suitable donor and put into your bloodstream through a drip into a vein. This is much less common.

Radiation therapy uses x-rays to kill cancer cells and stop the cancer growing. It might be used with chemotherapy or before a stem cell transplant.

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

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

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

Timeframes

Treatment should start within two weeks of diagnosis and staging or within 24 hours of diagnosis in a case where your organs are in immediate danger of failing or where the cancer is spreading fast.

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

Recovery

Cancer treatment can cause a range of 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.

Sometimes Hodgkin or diffuse large B-cell lymphoma can come back after treatment. It can come back in the same place or can appear somewhere different in your body.

If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.

Treatment will depend on how far the cancer has spread, how fast-growing it might be, and the symptoms you are experiencing.

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.