Appointment sheet
Lymphomatoid granulomatosis
Prepared with OnCo (onco.cc/prep/lymphomatoid-granulomatosis/). 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
10 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 EBV-encoded RNA in situ hybridisation in large B cells, Grade by number of EBV-positive B cells, Lung and brain imaging, Underlying immunodeficiency), 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?
Grade 1 and 2
- 5.For my situation (grade 1 and 2), which of the standard options do you recommend and why?
- 6.Am I a candidate for Interferon alfa-2a/2b, and what side effects should I expect?
Grade 3
- 7.For my situation (grade 3), which of the standard options do you recommend and why?
- 8.Am I a candidate for Rituximab, Cyclophosphamide, and what side effects should I expect?
Any stage
- 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 10.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
Tests and results to bring
Biomarker results to ask for: EBV-encoded RNA in situ hybridisation in large B cells, Grade by number of EBV-positive B cells, Lung and brain imaging, Underlying immunodeficiency (iatrogenic, HIV, primary).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Grade 1 and 2: Interferon alfa, with withdrawal of iatrogenic immunosuppression. (Interferon alfa-2a/2b, Non-Hodgkin lymphoma (all types))
- Grade 3: Rituximab-based chemotherapy as for large B-cell lymphoma. (Rituximab, Cyclophosphamide, Diffuse large B-cell lymphoma)
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