Appointment sheet
EBV-positive diffuse large B-cell lymphoma
Prepared with OnCo (onco.cc/prep/ebv-positive-dlbcl/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
11 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Epstein-Barr virus in the tumour cells by EBER in situ hybridisation, which is the only reliable way to find it, A non-germinal-centre phenotype in most cases: CD10 negative, MUM1 positive, LMP1, the viral membrane protein, expressed in most positive cases, CD30, expressed in about half of cases and not specific, The immune setting: transplant, HIV, immunosuppressive therapy or none identified, which decides whether the diagnosis is this entity or a lymphoma of immune deficiency), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Finding it
- 5.For my situation (finding it), which of the standard options do you recommend and why?
Treatment
- 6.For my situation (treatment), which of the standard options do you recommend and why?
- 7.Am I a candidate for Rituximab, and what side effects should I expect?
Any stage
- 8.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 9.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 10.I read that “The classification itself says the boundary between this entity and a lymphoma arising from an ageing immune system is arbitrary, and nobody has defined immune senescence in a way that could settle it”. How does that affect my plan?
- 11.I read that “The virus is present in the tumour and no treatment aims at it. Virus-specific T cells and other approaches used after transplant have not been tested here”. How does that affect my plan?
The words I may hear
- B-cell, T-cell and NK-cell lymphoma: The first thing a lymphoma report says is which kind of lymphocyte the cancer came from.
- R-CHOP (lymphoma chemoimmunotherapy): R-CHOP is the standard first treatment for diffuse large B-cell lymphoma: rituximab (an antibody against CD20) plus four chemotherapy drugs (cyclophosphamide, doxorubicin, vincristine, prednisone), given every three weeks for six cycles with curative intent.
- Epstein-Barr virus (EBV) in cancer: The common glandular-fever virus, carried lifelong by most adults, which in a minority of people drives nasopharyngeal cancer, some stomach cancers and several lymphomas.
- 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.
- The lymphoma regimen alphabet: R-CHOP, pola-R-CHP, DA-EPOCH-R, ABVD, BEACOPP and the rest: Lymphoma treatment is written in acronyms, one letter per drug.
Tests and results to bring
Biomarker results to ask for: Epstein-Barr virus in the tumour cells by EBER in situ hybridisation, which is the only reliable way to find it, A non-germinal-centre phenotype in most cases: CD10 negative, MUM1 positive, LMP1, the viral membrane protein, expressed in most positive cases, CD30, expressed in about half of cases and not specific, The immune setting: transplant, HIV, immunosuppressive therapy or none identified, which decides whether the diagnosis is this entity or a lymphoma of immune deficiency.
Scans and tests linked to this cancer: FDG PET, Histopathology & immunohistochemistry.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Finding it: In situ hybridisation for Epstein-Barr-encoded RNA on the biopsy. The European series that put the frequency at 3.1 per cent found that no morphological or immunohistochemical feature reliably identified the positive cases, and recommended running the stain on every new diffuse large B-cell lymphoma in a person over 50. Necrosis and CD30 expression are common in positive cases but neither is specific enough to select who to test. (Epstein-Barr virus (EBV) in cancer, Histopathology & immunohistochemistry, CD30)
- Treatment: The same immunochemotherapy as diffuse large B-cell lymphoma without the virus; the presence of Epstein-Barr virus does not currently change the regimen. Where there is an identifiable cause of immune suppression, reducing it is part of the treatment, as it is for the post-transplant lymphoproliferative disorders. The regimens are on the diffuse large B-cell lymphoma page and in the treatment layer of this family. (Diffuse large B-cell lymphoma, Rituximab, R-CHOP (lymphoma chemoimmunotherapy), Post-transplant lymphoproliferative disorder (PTLD), The lymphoma regimen alphabet: R-CHOP, pola-R-CHP, DA-EPOCH-R, ABVD, BEACOPP and the rest)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call