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Below, week by week, is what OnCo's record of Primary cutaneous anaplastic large cell lymphoma says about the first two months: the order is typical, the timing is yours to ask about. A cutaneous T-cell lymphoma that appears as one or a few red-purple nodules on the skin, often ulcerated, which may shrink on their own. Despite cells that look alarming under the microscope it stays in the skin in almost everybody and is treated with surgery or local radiotherapy rather than chemotherapy. Sections appear only where the record has something to say. Orientation, not medical advice.
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
The diagnosis cannot be made on the biopsy alone, because the cells look identical to those of systemic anaplastic large cell lymphoma. It requires staging that shows no disease outside the skin, and a clinical history: how long the lesion has been there, whether others have come and gone, and whether the person has lymphomatoid papulosis or mycosis fungoides, which coexist with it. An ALK-positive skin tumour is usually systemic disease that has reached the skin, and is staged and treated as such.
Surgical excision or local radiotherapy. Both work; the choice is made on the site, the size and what will heal well. Lesions recur in a substantial proportion of patients, 42 per cent in the Stanford series, and recurrence in the skin is expected rather than a treatment failure: it is treated the same way again. Up to a quarter of lesions regress partly or completely without any treatment, so observing a lesion that is already shrinking is reasonable.
Low-dose weekly methotrexate for disease that keeps recurring in many places. Brentuximab vedotin for widespread or extracutaneous disease: ALCANZA randomised patients with CD30-positive mycosis fungoides or primary cutaneous anaplastic large cell lymphoma to brentuximab vedotin against the physician's choice of methotrexate or bexarotene, and the figures are on the cutaneous T-cell lymphoma page. Combination chemotherapy is reserved for disease outside the skin: it produces short remissions and real harm in a disease otherwise controlled for decades, and over-treatment is the commonest avoidable harm here.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
Every term links to the glossary.