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Below, week by week, is what OnCo's record of Primary effusion lymphoma says about the first two months: the order is typical, the timing is yours to ask about. A rare lymphoma that grows as fluid rather than as a lump: it fills the space around the lungs, the heart or the bowel without forming a mass. It is caused by Kaposi sarcoma herpesvirus and arises mostly in people with advanced HIV infection, and it is diagnosed by sending the fluid itself for testing. 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.
The effusion is drained and sent, fresh, for cytology, flow cytometry and immunohistochemistry. The diagnosis requires the Kaposi sarcoma herpesvirus latency-associated nuclear antigen in the tumour nuclei. A cavity lymphoma without the virus is a different disease, recognised separately in 2022, that arises in fluid overload from heart failure, kidney failure or cirrhosis and behaves better. HIV testing is part of the work-up in every case.
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.
Combination chemotherapy, with antiretroviral therapy started or optimised at the same time where there is HIV, because controlling the HIV is part of controlling the lymphoma. Anti-CD20 antibodies have no role: the cells do not carry CD20. There has never been a randomised trial in this entity and the regimens come from series and from the HIV-associated lymphoma literature; they sit in the treatment layer of this family and on the HIV-associated lymphoma page. Entry into a trial is a reasonable first choice rather than a last resort.
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.