# Living with an indolent lymphoma rather than being cured of one

Source: https://onco.cc/terms/lymphoma-living-indolent-lymphoma/  
OnCo record `lymphoma-living-indolent-lymphoma` (Term). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

Slow-growing lymphomas are usually controlled rather than cured: treatment works, the disease goes away for a while, and at some point it comes back and is treated again. Most people live with that pattern for many years, and it asks something different of a person than being treated once and discharged.

## Summary

**What the pattern is.** Lymphoma Action describes follicular lymphoma, the commonest low-grade non-Hodgkin lymphoma with about 2,300 people diagnosed a year in the United Kingdom, as a disease in which treatment is generally successful and long remissions are possible, but at some point the lymphoma usually comes back and needs more treatment to keep it under control. It says most people live with follicular lymphoma for many years and are managed as if it were a long-term condition, with periods of feeling well and needing nothing and periods of needing treatment again. How long between the two is hard to predict.

**What that is like.** The charity quotes a woman diagnosed with follicular lymphoma: "I slowly came to terms with the fact that I am facing a condition that is manageable but not curable. It has taken me some time to adjust to this being my new life; my new normal. A life that includes regular hospital checks, blood tests and treatment." That is the shape of it, and it is the reason the practical advice for someone with an indolent lymphoma looks more like the advice given in diabetes or inflammatory bowel disease than the advice given after a cured cancer.

**Transformation, and why a change in symptoms is reported rather than watched.** Lymphoma Action says follicular lymphoma transforms into a faster-growing lymphoma in 2 to 3 people in every 100 each year, that a biopsy is done to check if the team suspects it, and that transformed disease is treated like diffuse large B-cell lymphoma. This is the main reason the instruction on active monitoring is to contact the team when symptoms change rather than to wait for the next appointment. The charity is equally clear that a change in symptoms often turns out to be something else entirely, and that lymph nodes swell for many reasons.

**What the follow-up looks like.** One to four check-ups a year on active monitoring, with examination and blood tests and a scan only if growth is suspected. Lymphoma Action also describes patient-triggered follow-up, where someone who has been monitored without needing treatment books their own appointments as they need them.

**What helps.** The charity's advice for people on active monitoring is practical and worth repeating: keep up general health and the screening and vaccinations you are offered, plan things to look forward to, tell someone how you are actually feeling, connect with people in the same position through a support meeting, a buddy or an online group, and take seriously the anxiety that gathers in the days before a check-up. The helpline is free on 0808 808 5555 and takes calls from relatives too.

## Fields

- Kind: Term
- Last checked: 2026-10-01
- Also known as: Chronic lymphoma; Low-grade lymphoma living with; Remission and relapse follicular lymphoma

## Sources

- Lymphoma Action: follicular lymphoma: https://lymphoma-action.org.uk/information-and-support/types-lymphoma/non-hodgkin-lymphoma/follicular-lymphoma
- Lymphoma Action: active monitoring (watch and wait): https://lymphoma-action.org.uk/information-and-support/lymphoma-treatment/active-monitoring-watch-and-wait
- Lymphoma Action: transformation of lymphoma: https://lymphoma-action.org.uk/information-and-support/types-lymphoma/transformation-lymphoma
- Lymphoma Action: the emotional impact of living with lymphoma: https://lymphoma-action.org.uk/information-and-support/living-and-beyond-lymphoma/emotional-impact-living-lymphoma
- Lymphoma Action: helpline services: https://lymphoma-action.org.uk/information-and-support/support-you/helpline-services
- Macmillan: non-Hodgkin lymphoma: https://www.macmillan.org.uk/cancer-information-and-support/lymphoma/non-hodgkin-lymphoma

## Connected records

- cancers: [Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome)](https://onco.cc/cancers/cutaneous-t-cell-lymphoma/), [Extranodal marginal zone lymphoma of mucosa-associated lymphoid tissue (MALT lymphoma)](https://onco.cc/cancers/malt-lymphoma/), [Follicular lymphoma](https://onco.cc/cancers/follicular-lymphoma/), [Mantle cell lymphoma](https://onco.cc/cancers/mantle-cell-lymphoma/), [Marginal zone lymphoma](https://onco.cc/cancers/marginal-zone-lymphoma/), [Nodal marginal zone lymphoma](https://onco.cc/cancers/nodal-marginal-zone-lymphoma/), [Non-Hodgkin lymphoma (all types)](https://onco.cc/cancers/non-hodgkin-lymphoma/), [Splenic marginal zone lymphoma](https://onco.cc/cancers/splenic-marginal-zone-lymphoma/), [Waldenström macroglobulinaemia](https://onco.cc/cancers/waldenstrom/)
- technologies: [Peer support and support groups](https://onco.cc/technologies/peer-support-groups/), [Psycho-oncology and distress screening](https://onco.cc/technologies/psycho-oncology/), [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/)
- terms: [FLIPI, FLIPI2 and POD24 (follicular lymphoma risk)](https://onco.cc/terms/flipi/), [POD24: progression of follicular lymphoma within two years, and why it changes the plan](https://onco.cc/terms/lymphoma-tx-pod24/), [The surveillance schedule, and the evidence that routine scans do not find relapse first](https://onco.cc/terms/lymphoma-living-scanxiety-and-surveillance/), [Watch and wait in follicular lymphoma: being told you have cancer and that nobody will treat it](https://onco.cc/terms/lymphoma-decision-watch-and-wait/), [Watch and wait in lymphoma: when the right treatment is none yet](https://onco.cc/terms/lymphoma-tx-watch-and-wait/), [Watchful waiting, and how it differs from active surveillance](https://onco.cc/terms/watchful-waiting/)

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