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Living with cancer· Appointment prep

Appointment sheet: Wilms tumour (nephroblastoma)

One page to bring and write on: your details, the questions for Wilms tumour (nephroblastoma) 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

Wilms tumour (nephroblastoma)

Prepared with OnCo (onco.cc/prep/wilms-tumor/). 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 Stage, Histology: anaplasia; SIOP risk group after pre-op chemotherapy, 1p and 16q loss of heterozygosity, 1q gain, TP53 mutation), 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?
Very low risk (stage I FH, <2 years, <550 g)
  1. 5.For my situation (very low risk (stage i fh, <2 years, <550 g)), which of the standard options do you recommend and why?
Stage I-II favourable histology
  1. 6.For my situation (stage i-ii favourable histology), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Vincristine, Dactinomycin (actinomycin D), and what side effects should I expect?
Stage III-IV favourable histology
  1. 8.For my situation (stage iii-iv favourable histology), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Vincristine, Dactinomycin (actinomycin D), Doxorubicin, and what side effects should I expect?
Diffuse anaplastic or relapsed
  1. 10.For my situation (diffuse anaplastic or relapsed), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Cyclophosphamide, Carboplatin, Etoposide or related drugs, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Vincristine, Dactinomycin (actinomycin D)?
  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 “Diffuse anaplastic and relapsed disease: survival ~50% or lower”. How does that affect my plan?
  5. 16.I read that “Global inequity: Wilms is curable, yet most children with it worldwide lack access to the treatment that cures it; adapted regimens (SIOP PODC) are the response”. How does that affect my plan?

The words I may hear

  • Nephrectomy: Removing a kidney (radical) or just the tumour-bearing part of it (partial).
  • Germline vs somatic mutations: Germline mutations are inherited and in every cell; somatic mutations arise in the tumour only.

Tests and results to bring

Biomarker results to ask for: Stage (COG or SIOP post-chemotherapy), Histology: anaplasia; SIOP risk group after pre-op chemotherapy (blastemal-type = high risk), 1p and 16q loss of heterozygosity (COG), 1q gain, TP53 mutation (anaplastic), Tumour weight and age (surgery-only eligibility), Germline WT1 / 11p15 testing.

Scans and tests linked to this cancer: Active surveillance, Germline (hereditary) testing, Ultrasound.

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