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Living with cancer· Appointment prep

Appointment sheet: Rare cancers of childhood (NCI PDQ umbrella)

One page to bring and write on: your details, the questions for Rare cancers of childhood (NCI PDQ umbrella) 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

Rare cancers of childhood (NCI PDQ umbrella)

Prepared with OnCo (onco.cc/prep/rare-childhood-cancers/). 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

15 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 predisposition testing, Tuberous sclerosis complexin cardiac rhabdomyoma, HPV 6/11 typing in respiratory papillomatosis, Tumour-specific adult markers borrowed by site), 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?
Cardiac rhabdomyoma with tuberous sclerosis
  1. 5.For my situation (cardiac rhabdomyoma with tuberous sclerosis), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Everolimus, and what side effects should I expect?
Recurrent respiratory papillomatosis
  1. 7.For my situation (recurrent respiratory papillomatosis), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Bevacizumab, Nonavalent HPV vaccine, and what side effects should I expect?
Adult-type carcinoma in a child
  1. 9.For my situation (adult-type carcinoma in a child), which of the standard options do you recommend and why?
  2. 10.How do the results of NCI-COG Pediatric MATCH (APEC1621) apply to someone like me?
Any stage
  1. 11.Are there clinical trials I could join, for example of NCI-COG Pediatric MATCH (APEC1621), Everolimus, Nonavalent HPV vaccine, TQ-B3234?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Evidence remains observational for almost every entity; international registries and adult-paediatric joint protocols are the response”. How does that affect my plan?
  5. 15.I read that “Adolescents with adult-type carcinomas fall between paediatric and adult services; AYA programmes and the RACE for Children Act (which requires paediatric evaluation of adult cancer drugs) aim to close the gap”. How does that affect my plan?

The words I may hear

  • RACE for Children Act: A US law that makes drug companies test new targeted cancer drugs in children whenever the drug's target matters in a childhood cancer, instead of letting them skip children because their cancers are rare.
  • Adolescent and young adult (AYA) oncology: Cancer in people aged 15-39, about 90,000 US cases a year, with a distinct mix of cancers, slower survival improvement than children or older adults, and specific needs: fertility, education and work, psychosocial support and trial access.
  • Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.

Tests and results to bring

Biomarker results to ask for: Germline predisposition testing (TP53, DICER1, mismatch repair, APC, RET, SDHx), Tuberous sclerosis complex (TSC1/TSC2) in cardiac rhabdomyoma, HPV 6/11 typing in respiratory papillomatosis, Tumour-specific adult markers borrowed by site.

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

  • Cardiac rhabdomyoma with tuberous sclerosis: Observation for spontaneous regression; mTOR inhibitor (everolimus or sirolimus) for haemodynamically significant tumours; surgery reserved for obstruction unresponsive to medical therapy. (Everolimus)
  • Recurrent respiratory papillomatosis: Repeated microdebrider or laser debulking to maintain the airway; systemic bevacizumab for severe refractory disease; HPV vaccination (prevention through maternal vaccination; adjuvant use under study). (Bevacizumab, Nonavalent HPV vaccine, HPV & HBV vaccination)
  • Adult-type carcinoma in a child: Treat per the adult site-specific standard with paediatric dose adjustment, enrol in the COG or EXPeRT rare tumour registry, and test for germline predisposition. (Germline (hereditary) testing, NCI-COG Pediatric MATCH (APEC1621))

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