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Below, week by week, is what OnCo's record of Ocular adnexal MALT lymphoma says about the first two months: the order is typical, the timing is yours to ask about. A slow-growing MALT lymphoma of the tissues around the eye: the conjunctiva, the eye socket, the tear gland or the eyelid. It usually shows itself as a painless salmon-pink patch on the white of the eye or as an eye that has begun to bulge, and it is controlled in almost everybody, often by a short course of radiotherapy. 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.
A biopsy of the lesion is needed, because about a third of lymphomas at this site are not marginal zone lymphomas and the treatment differs. Imaging of the orbit, usually by magnetic resonance, maps the extent and the relationship to the optic nerve and the muscles. Staging of the rest of the body follows, because apparently localised ocular disease is sometimes part of a systemic marginal zone lymphoma. Both orbits are examined; bilateral disease is common and does not by itself mean the lymphoma has spread.
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.
Radiotherapy to the orbit is the standard treatment for disease confined to the ocular adnexa and it controls it in almost everybody. In a series of 28 patients irradiated after a trial of doxycycline, 30 to 36 Gy in 15 to 18 fractions produced a response in all of them and a complete response in 89 per cent, with four-year progression-free survival of 74 per cent and little toxicity beyond three cases of grade 2 cataract and three of grade 1 blepharitis. Very low-dose schedules of about 4 Gy in two fractions are used to spare the lens and the tear gland, with retreatment if the lymphoma returns. Where local series have shown an association with Chlamydia psittaci, a course of doxycycline is a reasonable first step, and the same series shows that trying it first did not cost patients their response to radiotherapy afterwards.
Treated as any other marginal zone lymphoma: watched where it is causing no trouble, and treated with an anti-CD20 antibody alone or with chemotherapy when it is. The regimens, the thresholds for starting and the evidence are on the marginal zone and MALT lymphoma pages and in the treatment layer of this family.
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.