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Living with cancer· Appointment prep

Appointment sheet: Rosai-Dorfman-Destombes disease

One page to bring and write on: your details, the questions for Rosai-Dorfman-Destombes disease plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Rosai-Dorfman-Destombes disease

Prepared with OnCo (onco.cc/prep/rosai-dorfman-disease/). 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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

16 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example S100 and CD68 positive, CD1a and langerin negative histiocytes with emperipolesis, KRAS, MAP2K1 and other MAPK pathway mutations, FDG-PET/CT for extent and response, IgG4-positive plasma cells, Immunoglobulin levels, autoimmune screen and SLC29A3 testing where familial disease is suspected), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Asymptomatic nodal or cutaneous disease
  1. 6.For my situation (asymptomatic nodal or cutaneous disease), which of the standard options do you recommend and why?
Single or compressive extranodal lesion
  1. 7.For my situation (single or compressive extranodal lesion), which of the standard options do you recommend and why?
Multifocal or organ-threatening disease
  1. 8.For my situation (multifocal or organ-threatening disease), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Cladribine, Methotrexate, Rituximab, and what side effects should I expect?
MAPK-mutant or refractory disease
  1. 10.For my situation (mapk-mutant or refractory disease), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Cobimetinib, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Cobimetinib?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “Which patients will regress spontaneously cannot be predicted”. How does that affect my plan?
  5. 16.I read that “Two thirds of cases have no identified driver mutation”. How does that affect my plan?

The words I may hear

  • Retroperitoneum: The space at the back of the abdomen, behind the gut's lining, holding the kidneys, adrenals, pancreas, aorta and the para-aortic lymph nodes.
  • Driver mutation: One of the few mutations in a tumour that actually causes it to grow.

Tests and results to bring

Diagnosis and staging: Excisional biopsy with immunohistochemistry and MAPK pathway sequencing; FDG-PET/CT; MRI where neurological disease is suspected; immunoglobulins and autoimmune screen.

Biomarker results to ask for: S100 and CD68 positive, CD1a and langerin negative histiocytes with emperipolesis, KRAS, MAP2K1 and other MAPK pathway mutations (about a third), FDG-PET/CT for extent and response, IgG4-positive plasma cells (IgG4-related overlap), Immunoglobulin levels, autoimmune screen and SLC29A3 testing where familial disease is suspected, MRI of brain and spine for neurological disease.

Scans and tests linked to this cancer: Active surveillance, Comprehensive genomic profiling, FDG PET, Histopathology & immunohistochemistry, MRI.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

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 browser
What I was told
Agreed next steps, dates and who to call