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Lymphoma: what happens now

Lymphoma is cancer of the lymphatic system. An important and hopeful point: many lymphomas respond very well to treatment, and some are curable even when widespread.

A diagnosis is a shock, and the first two weeks feel like chaos: appointments, scans, unfamiliar words, and big decisions while you are frightened. There is a normal sequence to this, and you do not have to figure it all out today.

Two things help most early: bring someone to every appointment for a second pair of ears, and ask for a Medical Social Worker early, because they handle the money and admin and unlock most financial help.

What the early appointments are for

  • Confirming the diagnosis: usually a biopsy plus lab tests, to identify exactly what type of cancer it is.
  • Staging scans: imaging such as CT, MRI, PET, or ultrasound to see the size and whether it has spread.
  • Meeting your specialist team: often a surgeon, a medical oncologist, and a radiation oncologist; complex cases are discussed by a multi-disciplinary tumour board.
  • The treatment-plan discussion: the appointment to come prepared for.

Understanding your stage

Stage is how much cancer there is and whether it has spread. A common system is TNM, combined into stages 0 to 4. Some cancers use their own system, shown on each cancer-type page.

Grade is how abnormal the cells look under the microscope, a hint at how fast they may grow.

  • Early or localized (the cancer is contained): treatment is often aimed at cure, and local treatments such as surgery or radiotherapy may be enough.
  • Locally advanced (spread to nearby tissue or lymph nodes): often a combination, for example surgery plus chemotherapy or radiotherapy.
  • Advanced or metastatic (spread to distant parts): the goal is more often to control the cancer and keep you well for as long as possible, usually with drug treatments. Advanced is not the same as untreatable: many advanced cancers are controlled for a long time, and a few such as some lymphomas can still be cured.

Two people with the same cancer can have very different plans, because the stage, the cancer's biology, and your general health all feed into the decision.

Ask your team to explain your specific stage in plain words and what it means for your goal of treatment. Avoid general survival statistics online: they are averages across very different people, often out of date, and not your prognosis.

How your stage is described for Lymphoma: Lymphoma does not use the TNM system. It uses a system based on which groups of lymph nodes and organs are involved (commonly the Ann Arbor system, stages 1 to 4). The subtype matters as much as the stage, and even stage 4 lymphoma can be very treatable.

Tests you are likely to have

  • A lymph node biopsy, ideally removing a whole node (excisional biopsy), needed to identify the exact subtype.
  • PET-CT scan to stage it.
  • Blood tests, and sometimes a bone marrow biopsy.
  • Identifying the subtype: lymphoma is broadly Hodgkin or non-Hodgkin, with many subtypes, and the subtype drives the whole treatment plan.

Treatments commonly involved

  • Chemotherapy, often the main treatment and frequently given with curative intent over a number of cycles.
  • Immunotherapy, in particular rituximab for many B-cell non-Hodgkin lymphomas (often with chemotherapy). Some of these are on the Cancer Drug List, so check coverage.
  • Radiotherapy, used in some cases.
  • Stem cell transplant, in selected situations.

Questions to ask (all cancers)

  • What type of cancer is this, and what is my stage and grade?
  • What is the goal of treatment: to cure, to control, or to relieve symptoms?
  • What are my options, and what do you recommend and why?
  • What are the main side effects, and how long will treatment take?
  • Are any recommended drugs on the Cancer Drug List, and what will it roughly cost?
  • Is a clinical trial an option for me?
  • Who do I contact between appointments, and is there a 24-hour number if I feel unwell during treatment?
  • Can I see a Medical Social Worker about costs and support?

Questions specific to this cancer

  • Is this Hodgkin or non-Hodgkin lymphoma, and which subtype?
  • Is the goal of treatment to cure?
  • Will rituximab or other immunotherapy be used, and is it covered on the Cancer Drug List?
  • How many cycles of treatment, and over how long?
  • If chemotherapy may affect fertility and I might want children, can I see a fertility specialist before starting?

Money and support

The financial and admin load is heavy, and most help is unlocked by people, not websites. The single most useful early action is to ask for a Medical Social Worker. One assessment can open MediFund, hospital and charity cancer funds, subsidised-patient status, and caregiver grants. See the support directory for the full list.

Open the support directory

Support specific to this cancer

  • Blood-cancer and lymphoma support groups.
  • Fertility counselling before treatment where relevant.
  • Plus everything in the shared support directory.