• Skin-directed therapy in mycosis fungoides: creams, light and small radiotherapy fields: Early mycosis fungoides is treated on the skin, not through the bloodstream.
• Transformation of an indolent lymphoma: A slow-growing lymphoma can change into a fast-growing one.
• Lymphoma (tissue type): Cancer of lymphocytes, the white blood cells of the immune system, usually growing as masses in lymph nodes, spleen or other organs.
• What the NHS in England funds for lymphoma, appraisal by appraisal: A drug licensed for lymphoma is not automatically available on the NHS: NICE appraises each use separately and can recommend it, fund it for a while through the Cancer Drugs Fund, or refuse it.
• Indolent and aggressive lymphoma: Lymphomas are split by how fast they grow, and the split decides what happens next.
• Nodal and extranodal lymphoma: A lymphoma that starts in a lymph node is called nodal; one that starts in an organ is called extranodal.
• Radiotherapy in lymphoma: involved-site fields, 24 Gy, 4 Gy and total skin electron therapy: Lymphoma is one of the most radiation-sensitive cancers there is, so the doses are low and the fields are small.
• The two lymphoma classifications of 2022 (WHO-HAEM5 and ICC): Since 2022 there have been two reference classifications of lymphoma rather than one, published within months of each other by overlapping groups of experts.

Mycosis fungoides: staging first, because stage decides everything: Mycosis fungoides is staged by the ISCL/EORTC TNMB system, which classifies skin (patches or plaques covering under or over 10 per cent of the body surface, tumours, erythroderma), nodes, viscera and blood. The staging revision of 2007 remains the basis of treatment choice and trial eligibility, and a validation study in a large cohort confirmed that the resulting stages separate survival. Why it matters more here than in most cancers: early-stage mycosis fungoides (stage IA to IIA, patches and plaques without tumours or blood involvement) has a life expectancy close to that of the general population and is treated with creams and light, while advanced disease (tumour stage, erythroderma, nodal or blood involvement) needs systemic treatment. Treating early disease with chemotherapy shortens neither the disease nor anything else and causes harm, which is the single most important thing to get right. The diagnosis itself is often slow, because early mycosis fungoides looks like eczema or psoriasis for years and the biopsy is frequently non-diagnostic until the disease is established. Repeated biopsies over time, read by a dermatopathologist, are normal and are not a failure.

Biomarker results to ask for: The revised ISCL and EORTC stage of 2007, covering skin, nodes, viscera and blood, Patches alone against patches and plaques within early skin stage, which separates survival, The folliculotropic variant, independently associated with worse survival, The tumour clone detectable in the blood without Sezary cells, which is independently associated with worse survival, Lactate dehydrogenase, Large-cell transformation on a repeat biopsy of a changing lesion, CD30 expression, which decides whether brentuximab vedotin is an option.

Scans and tests linked to this cancer: Histopathology & immunohistochemistry.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

• Early-stage mycosis fungoides (IA to IIA): skin-directed treatment only: The aim is control of the skin with the least treatment that achieves it, over decades. Topical corticosteroids, potent or very potent, are first line for patches and plaques and clear a large proportion. Topical mechlorethamine (chlormethine) gel, approved in the United States on 23 August 2013 for stage IA and IB mycosis fungoides-type cutaneous T-cell lymphoma after prior skin-directed therapy, cleared index lesions in its pivotal randomised trial in 58.5 per cent of patients against 47.7 per cent with the traditional compounded ointment, meeting the non-inferiority bar; contact dermatitis is the main problem and is managed by reducing frequency rather than stopping. Topical bexarotene gel and topical carmustine are alternatives. Imiquimod is used for a small number of resistant plaques. Phototherapy is the mainstay for widespread patch and plaque disease: narrowband UVB for patches and thin plaques, PUVA (psoralen with UVA) for thicker plaques and follicular disease, given two or three times a week at a dermatology unit and then tapered to a maintenance schedule. Cumulative UV dose carries its own long-term skin cancer risk, which is the reason for tapering. Localised radiotherapy at low dose, often 8 Gy in two fractions, clears an individual tumour or a resistant plaque quickly and can be repeated. Total skin electron beam therapy treats the whole skin surface and is reserved for extensive disease; low-dose schedules of 10 to 12 Gy are now preferred to the historic 30 to 36 Gy because they can be repeated. (Mechlorethamine (chlormethine), Bexarotene, Carmustine, Imiquimod, Total skin electron beam therapy, Palliative radiotherapy, Skin-directed therapy in mycosis fungoides: creams, light and small radiotherapy fields, Radiotherapy in lymphoma: involved-site fields, 24 Gy, 4 Gy and total skin electron therapy, Topical chemotherapy in cutaneous T-cell lymphoma: positive results of a randomized, controlled, multicenter trial testing the efficacy and safety of a novel mechlorethamine, 0.02%, gel in mycosis fungoides)
• Advanced mycosis fungoides (IIB to IVB): systemic treatment, and what to reach for first: Systemic treatment is indicated for tumour-stage disease, erythroderma, nodal or visceral involvement, blood involvement, or skin disease that has failed skin-directed therapy. Single agents are preferred to combination chemotherapy, which produces fast responses that do not last and damages the immune system in a patient already prone to skin infection and sepsis. Retinoids and interferon. Oral bexarotene and interferon alfa are long-standing options, often combined with phototherapy; both are slow-acting and require monitoring of lipids and thyroid function in the case of bexarotene. Methotrexate at low weekly oral dose, which is inexpensive, familiar and effective in a proportion. Mogamulizumab, an anti-CCR4 antibody approved in the United States on 8 August 2018. MAVORIC randomised 372 patients with previously treated mycosis fungoides or Sezary syndrome to mogamulizumab or vorinostat: median progression-free survival 7.7 against 3.1 months (hazard ratio 0.53) and overall response 28 against 5 per cent, with a response in the blood compartment of 68 per cent. It is therefore the drug of choice where the blood is involved. Brentuximab vedotin for CD30-expressing disease. ALCANZA randomised patients with CD30-positive mycosis fungoides or primary cutaneous anaplastic large cell lymphoma to brentuximab vedotin or to physician's choice of methotrexate or bexarotene: objective response lasting four months or more was 56.3 against 12.5 per cent and median progression-free survival 16.7 against 3.5 months. Peripheral neuropathy is the limiting toxicity. Other options: romidepsin, denileukin diftitox, which returned in 2024 as Lymphir for relapsed or refractory stage I to III disease after at least one systemic therapy, gemcitabine, pegylated liposomal doxorubicin, and allogeneic transplant with reduced-intensity conditioning, which is the only treatment that produces long remissions in advanced disease and is offered to younger fit patients. (MAVORIC: mogamulizumab versus vorinostat in previously treated cutaneous T-cell lymphoma, ALCANZA: brentuximab vedotin versus physician's choice in CD30-positive cutaneous T-cell lymphoma, Mogamulizumab, Brentuximab vedotin, Bexarotene, Interferon alfa-2a/2b, Methotrexate, Romidepsin, Vorinostat, Denileukin diftitox, Gemcitabine, Pegylated liposomal doxorubicin, Allogeneic stem cell transplantation, Skin-directed therapy in mycosis fungoides: creams, light and small radiotherapy fields)
• Living with mycosis fungoides: itch, infection and the things that make the difference day to day: Itch is the symptom patients rank as the worst and it is undertreated. Emollients applied several times a day, potent topical steroids, sedating antihistamines at night, gabapentin or pregabalin for neuropathic itch, and aprepitant or mirtazapine in resistant cases. Controlling the disease is the most effective anti-itch treatment, which is an argument for treating skin disease that is not otherwise dangerous. Infection. Staphylococcus aureus colonises broken skin and is a common cause of both flares and sepsis; swabs, topical antiseptics, bleach baths and prompt antibiotics for cellulitis are part of routine care, and a patient with advanced disease and a fever is treated as an emergency. Skin care. Soap substitutes, lukewarm baths, cotton clothing, and avoidance of overheating. Photoprotection after phototherapy or radiotherapy. The long view. Early-stage mycosis fungoides is a chronic skin disease to be managed rather than an emergency, and most people with it die of something else. That is worth saying out loud at diagnosis, because the word lymphoma does not sound like that. (Skin-directed therapy in mycosis fungoides: creams, light and small radiotherapy fields, Early integrated palliative care, Mechlorethamine (chlormethine), Bexarotene)

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.