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Living with cancer· Appointment prep

Appointment sheet: Gastrointestinal stromal tumour (GIST)

One page to bring and write on: your details, the questions for Gastrointestinal stromal tumour (GIST) 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

Gastrointestinal stromal tumour (GIST)

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

17 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 KIT and PDGFRA mutation status, Secondary KIT mutations by ctDNA at progression, SDHB immunohistochemistry, Mitotic rate, size, site, CD117and DOG1 IHC), 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, resectable
  1. 5.For my situation (localised, resectable), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Imatinib, and what side effects should I expect?
Advanced, first line
  1. 7.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Imatinib, Avapritinib, and what side effects should I expect?
Advanced, second line
  1. 9.For my situation (advanced, second line), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Sunitinib, Ripretinib, and what side effects should I expect?
Advanced, third/fourth line
  1. 11.For my situation (advanced, third/fourth line), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Regorafenib, Ripretinib, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Ripretinib, Avapritinib, Liquid biopsy (ctDNA), Velzatinib?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “Polyclonal resistance: different lesions carry different secondary KIT mutations”. How does that affect my plan?
  5. 17.I read that “SDH-deficient and other wild-type GIST have no effective TKI”. How does that affect my plan?

The words I may hear

  • Drug resistance (primary and acquired): Why cancer drugs stop working: the tumour either never depended on the target or evolves around the block.
  • Oncogene addiction: When a cancer depends so completely on one mutated gene that blocking it collapses the tumour.
  • Circulating tumour DNA (ctDNA): Circulating tumour DNA (ctDNA) consists of fragments of DNA shed by tumour cells into the blood, detectable with sensitive sequencing.
  • Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.

Tests and results to bring

Biomarker results to ask for: KIT and PDGFRA mutation status (mandatory before therapy), Secondary KIT mutations by ctDNA at progression, SDHB immunohistochemistry, Mitotic rate, size, site (risk), CD117 (KIT) and DOG1 IHC, NF1, BRAF, NTRK in wild-type GIST.

Scans and tests linked to this cancer: Endoscopic resection (EMR / ESD), Liquid biopsy (ctDNA).

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Localised, resectable: Complete resection without lymphadenectomy; adjuvant imatinib 3 years for high-risk (SSGXVIII); neoadjuvant imatinib to downsize when organ-sparing matters. (Imatinib)
  • Advanced, first line: Imatinib 400 mg (800 mg for KIT exon 9); avapritinib for PDGFRA D842V; continue until progression. (Imatinib, Avapritinib)
  • Advanced, second line: Sunitinib (or ripretinib for KIT exon 11 + 17/18 secondary mutations per ctDNA, INSIGHT). (Sunitinib, Ripretinib, Liquid biopsy (ctDNA))
  • Advanced, third/fourth line: Regorafenib, then ripretinib (INVICTUS); rechallenge or continue TKI beyond progression; clinical trials (bezuclastinib-sunitinib). (Regorafenib, Ripretinib)

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