Appointment sheet
Pleuropulmonary blastoma (types I, Ir, II and III)
Prepared with OnCo (onco.cc/prep/pleuropulmonary-blastoma-dicer1/). 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 Germline DICER1 mutation, Subtype I, Ir, II or III on central pathology review, Somatic DICER1 RNase IIIb hotspot mutation, Family history of DICER1 syndrome tumours), 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?
Type I and Ir
- 5.For my situation (type i and ir), which of the standard options do you recommend and why?
Type II and III
- 6.For my situation (type ii and iii), which of the standard options do you recommend and why?
- 7.Am I a candidate for Ifosfamide, Vincristine, Doxorubicin, 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: Germline DICER1 mutation (the majority), Subtype I, Ir, II or III on central pathology review, Somatic DICER1 RNase IIIb hotspot mutation, Family history of DICER1 syndrome tumours.
Scans and tests linked to this cancer: Germline (hereditary) testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Type I and Ir: Complete resection of the cyst; chemotherapy debated; DICER1 testing and surveillance. (Childhood lung and airway tumours (pleuropulmonary blastoma, tracheobronchial tumours), Germline (hereditary) testing)
- Type II and III: Resection and multi-agent chemotherapy (ifosfamide, vincristine, actinomycin, doxorubicin), radiotherapy for residual disease. (Ifosfamide, Vincristine, Doxorubicin, Childhood lung and airway tumours (pleuropulmonary blastoma, tracheobronchial tumours))
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