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Living with cancer· Appointment prep

Appointment sheet: Childhood lung and airway tumours (pleuropulmonary blastoma, tracheobronchial tumours)

One page to bring and write on: your details, the questions for Childhood lung and airway tumours (pleuropulmonary blastoma, tracheobronchial tumours) 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

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Appointment sheet

Childhood lung and airway tumours (pleuropulmonary blastoma, tracheobronchial tumours)

Prepared with OnCo (onco.cc/prep/pleuropulmonary-blastoma/). 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

14 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 Germline DICER1 loss-of-function variant, Somatic DICER1 RNase IIIb hotspot mutation, PPB typeon pathology, Chest CT for cystic lung lesions in DICER1 carriers, ALK rearrangement), 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?
Type I or Ir pleuropulmonary blastoma
  1. 5.For my situation (type i or ir pleuropulmonary blastoma), which of the standard options do you recommend and why?
Type II or III pleuropulmonary blastoma
  1. 6.For my situation (type ii or iii pleuropulmonary blastoma), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Ifosfamide, Vincristine, Dactinomycin (actinomycin D) or related drugs, and what side effects should I expect?
Tracheobronchial carcinoid or mucoepidermoid carcinoma
  1. 8.For my situation (tracheobronchial carcinoid or mucoepidermoid carcinoma), which of the standard options do you recommend and why?
DICER1 carriers
  1. 9.For my situation (dicer1 carriers), which of the standard options do you recommend and why?
Any stage
  1. 10.Are there clinical trials I could join, for example of Germline (hereditary) testing?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “Whether adjuvant chemotherapy helps type I PPB; the registry is comparing outcomes with and without it”. How does that affect my plan?
  5. 14.I read that “Type III and recurrent PPB have poor outcomes and no targeted therapy; DICER1-dependent biology (miRNA processing) has not yet yielded a drug”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: Germline DICER1 loss-of-function variant, Somatic DICER1 RNase IIIb hotspot mutation, PPB type (I, Ir, II, III) on pathology, Chest CT for cystic lung lesions in DICER1 carriers, ALK rearrangement (inflammatory myofibroblastic tumour).

Scans and tests linked to this cancer: CT (computed tomography), 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 or Ir pleuropulmonary blastoma: Complete surgical resection of the cystic lesion; adjuvant chemotherapy is optional and registry-guided; germline DICER1 testing for the child and first-degree relatives. (Germline (hereditary) testing)
  • Type II or III pleuropulmonary blastoma: Neoadjuvant or adjuvant multi-agent chemotherapy (ifosfamide, vincristine, dactinomycin, doxorubicin) with complete resection; radiotherapy for unresectable residual disease. (Ifosfamide, Vincristine, Dactinomycin (actinomycin D), Doxorubicin)
  • Tracheobronchial carcinoid or mucoepidermoid carcinoma: Bronchoscopic assessment and parenchyma-sparing surgical resection (sleeve resection); systemic therapy rarely needed. (Bronchoscopy (EBUS, robotic navigation))
  • DICER1 carriers: Surveillance per international consensus: chest imaging in infancy and early childhood, abdominal ultrasound, thyroid ultrasound, and awareness of ovarian and other syndrome tumours. (Hereditary cancer syndromes, Germline (hereditary) testing)

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