Watch and wait in follicular lymphoma: being told you have cancer and that nobody will treat it

**What is known about the waiting itself.** Lymphoma Action says monitoring means one to four check-ups a year, with a conversation about symptoms, an examination of the neck, armpits, groin and abdomen, and blood tests; a scan is not usually done unless the team suspects the lymphoma is growing, in order to avoid unnecessary radiation. Treatment is usually suggested when the marrow is affected and blood counts are falling, when an organ is affected, when nodes or the spleen grow quickly or appear in new places, when fever, night sweats and weight loss appear, or when symptoms become difficult to live with. Some people need treatment soon; some wait many years; some never need it.

**What nobody can tell you.** How long your own wait will be. Lymphoma Action says this varies a great deal and is hard to predict, and that follicular lymphoma transforms into a faster-growing lymphoma in 2 to 3 people in every 100 each year, which is why a change in symptoms is a reason to ring rather than to wait for the next appointment.

**The part that is not medical.** A person on active monitoring quoted on the Lymphoma Action page puts the difficulty exactly: "Active monitoring is counter-intuitive: 'I have cancer, but it's not being treated.' There is no physical battle, but there is a psychological challenge." The charity says many people find it helps to think of the lymphoma as a long-term condition to manage, that family and friends often find the approach harder to understand than the patient does, and that anxiety in the weeks before a check-up is common. Its helpline is free on 0808 808 5555 and is open to relatives as well as patients.