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Living with cancer· Appointment prep

Appointment sheet: Renal cell carcinoma

One page to bring and write on: your details, the questions for Renal cell carcinoma 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

Renal cell carcinoma

Prepared with OnCo (onco.cc/prep/rcc/). 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

31 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 Clear-cell vs non-clear-cell histology, VHL, IMDC risk, CAIX, IMDC risk group), 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?
Localised
  1. 5.For my situation (localised), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Pembrolizumab, Belzutifan, and what side effects should I expect?
Metastatic
  1. 7.For my situation (metastatic), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Nivolumab, Ipilimumab, Pembrolizumab or related drugs, and what side effects should I expect?
Small renal mass (<4 cm)
  1. 9.For my situation (small renal mass (<4 cm)), which of the standard options do you recommend and why?
Localised T1b-T3
  1. 10.For my situation (localised t1b-t3), which of the standard options do you recommend and why?
High-risk after nephrectomy (clear-cell)
  1. 11.For my situation (high-risk after nephrectomy (clear-cell)), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Pembrolizumab, Belzutifan, and what side effects should I expect?
  3. 13.How do the results of KEYNOTE-564 and LITESPARK-022 apply to someone like me?
Metastatic, intermediate/poor risk, first line
  1. 14.For my situation (metastatic, intermediate/poor risk, first line), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Nivolumab, Ipilimumab, Pembrolizumab or related drugs, and what side effects should I expect?
  3. 16.How do the results of CheckMate 214 and KEYNOTE-426 apply to someone like me?
Metastatic, favourable risk, first line
  1. 17.For my situation (metastatic, favourable risk, first line), which of the standard options do you recommend and why?
  2. 18.Am I a candidate for Pembrolizumab, Axitinib, Lenvatinib or related drugs, and what side effects should I expect?
Second line after IO-based therapy
  1. 19.For my situation (second line after io-based therapy), which of the standard options do you recommend and why?
  2. 20.Am I a candidate for Cabozantinib, Belzutifan, Tivozanib or related drugs, and what side effects should I expect?
  3. 21.How do the results of LITESPARK-005 and CONTACT-03 apply to someone like me?
Oligometastatic / oligoprogressive disease
  1. 22.For my situation (oligometastatic / oligoprogressive disease), which of the standard options do you recommend and why?
Non-clear-cell RCC
  1. 23.For my situation (non-clear-cell rcc), which of the standard options do you recommend and why?
  2. 24.Am I a candidate for Cabozantinib, Lenvatinib, Pembrolizumab or related drugs, and what side effects should I expect?
VHL disease
  1. 25.For my situation (vhl disease), which of the standard options do you recommend and why?
  2. 26.Am I a candidate for Belzutifan, and what side effects should I expect?
Any stage
  1. 27.Are there clinical trials I could join, for example of Raludotatug deruxtecan, Intismeran autogene, PF-08634404, Zanzalintinib?
  2. 28.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 29.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 30.I read that “Non-clear-cell histologies understudied”. How does that affect my plan?
  5. 31.I read that “No validated predictive biomarker for IO”. How does that affect my plan?

The words I may hear

  • IMDC risk groups (favourable / intermediate / poor): The IMDC score uses six factors to sort metastatic kidney cancer into three risk groups.
  • Sarcomatoid differentiation (RCC): A spindle-cell change found in about 10% of kidney cancers that makes them aggressive and, unexpectedly, unusually responsive to immunotherapy.
  • Debulking (cytoreductive surgery): Surgery that removes as much tumour as possible when it cannot all be removed cleanly; leaving nothing visible behind is what matters.
  • Nephrectomy: Removing a kidney (radical) or just the tumour-bearing part of it (partial).
  • Portal vein tumour thrombus (macrovascular invasion): Liver cancer growing into the main vein that brings blood from the gut to the liver.
  • Von Hippel-Lindau disease: Von Hippel-Lindau disease is an inherited condition causing kidney cancers, adrenal tumours, and blood-vessel tumours of the brain, spine, eye and pancreas from early adulthood.
  • Radiofrequency ablation (RFA): Killing a tumour by heating it with an electrical current through a needle placed under image guidance, without removing it.
  • Cryoablation: Destroying a tumour by freezing it with a needle that reaches minus 40°C or below; the ice ball is visible on CT, so the treated zone can be watched forming.
  • Active surveillance and observation: Deliberately not treating a cancer yet, but checking it regularly with blood tests, scans or biopsies and treating only if it shows signs of progressing.
  • Oligometastatic disease: Cancer that has spread to only a few places, which may still be curable by treating each spot.

Tests and results to bring

Biomarker results to ask for: Clear-cell vs non-clear-cell histology, VHL, IMDC risk, CAIX (imaging, 89Zr-girentuximab), IMDC risk group (six clinical factors), Histology and sarcomatoid features, VHL / HIF-2α axis (belzutifan), PD-L1 (not used for selection), CAIX (imaging; theranostic target), CD70 (CAR-T target), MET (papillary type 1), Gene-expression signatures (angiogenesis vs T-effector; research), ctDNA (low shedding; research).

Scans and tests linked to this cancer: PET (positron emission tomography), Dual-energy and spectral CT, Elastography and contrast-enhanced ultrasound, CAIX PET (89Zr-girentuximab), Immuno-PET.

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