Appointment sheet
Primary cutaneous follicle centre lymphoma
Prepared with OnCo (onco.cc/prep/primary-cutaneous-follicle-centre-lymphoma/). 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
9 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 BCL6 positive; CD10 variable; MEF2B and HGAL positive, IgM negative, TNFRSF14 mutation or 1p36 deletion, Usually no BCL2 rearrangement), 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?
Solitary or localised
- 5.For my situation (solitary or localised), which of the standard options do you recommend and why?
Multifocal or extracutaneous
- 6.For my situation (multifocal or extracutaneous), 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?
Tests and results to bring
Biomarker results to ask for: BCL6 positive; CD10 variable; MEF2B and HGAL positive, IgM negative (positive in leg-type large B-cell lymphoma), TNFRSF14 mutation or 1p36 deletion, Usually no BCL2 rearrangement.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Solitary or localised: Local radiotherapy or excision. (Follicular lymphoma)
- Multifocal or extracutaneous: Rituximab for multifocal skin disease; the parent's systemic pathways for the rare extracutaneous spread. (Rituximab, Follicular 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