Appointment sheet
Cancer of unknown primary, unfavourable (adenocarcinoma and poorly differentiated carcinoma)
Prepared with OnCo (onco.cc/prep/cup-unfavourable/). 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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
19 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Comprehensive genomic profiling, Microsatellite instability, tumour mutational burden and PD-L1, Performance status and serum lactate dehydrogenase, Immunohistochemistry lineage panel, Circulating tumour DNA where tissue is insufficient), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Work-up
- 5.For my situation (work-up), which of the standard options do you recommend and why?
First line, fit patients
- 6.For my situation (first line, fit patients), which of the standard options do you recommend and why?
- 7.Am I a candidate for Carboplatin, Paclitaxel / nab-paclitaxel, Gemcitabine + cisplatin, and what side effects should I expect?
- 8.How do the results of CUPISCO apply to someone like me?
Actionable alterations
- 9.For my situation (actionable alterations), which of the standard options do you recommend and why?
- 10.Am I a candidate for Pembrolizumab, Nivolumab, and what side effects should I expect?
Second line
- 11.For my situation (second line), which of the standard options do you recommend and why?
- 12.Am I a candidate for Nivolumab, Pembrolizumab, and what side effects should I expect?
- 13.How do the results of A Phase II/III Study of F520 Combined With Paclitaxel Plus Carboplatin in the Treatment of Cancer of Unknown Primary (CUP) apply to someone like me?
Poor performance status
- 14.For my situation (poor performance status), which of the standard options do you recommend and why?
Any stage
- 15.Are there clinical trials I could join, for example of CUPISCO, A Phase II/III Study of F520 Combined With Paclitaxel Plus Carboplatin in the Treatment of Cancer of Unknown Primary (CUP), Comprehensive genomic profiling, Liquid biopsy (ctDNA)?
- 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 18.I read that “Median survival remains under a year for most patients”. How does that affect my plan?
- 19.I read that “Only a third have an actionable alteration and the gain from targeting it is modest”. How does that affect my plan?
The words I may hear
- Primary tumour: The original tumour where a cancer started.
- Immunohistochemistry (IHC): Staining a tissue slice with antibodies so a protein shows up in colour under the microscope.
- Tumour mutational burden (TMB): How many mutations a tumour has.
- Tumour-agnostic (tissue-agnostic) approval: A tumour-agnostic approval lets a drug be used for any cancer carrying a specific molecular feature, regardless of where it started.
- Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR): Microsatellite instability is the mark of a broken DNA spell-checker (loss of MLH1, MSH2, MSH6 or PMS2) that leaves thousands of mutations, so the tumour displays abnormal proteins that T cells can recognise.
Tests and results to bring
Work-up: Exclude favourable subsets; comprehensive genomic profiling of tissue or plasma; assess performance status and lactate dehydrogenase.
Biomarker results to ask for: Comprehensive genomic profiling (actionable alterations in about a third), Microsatellite instability, tumour mutational burden and PD-L1 (immunotherapy), Performance status and serum lactate dehydrogenase (prognosis), Immunohistochemistry lineage panel (to exclude favourable subsets), Circulating tumour DNA where tissue is insufficient, Tissue-of-origin classifier (supportive).
Scans and tests linked to this cancer: Comprehensive genomic profiling, Histopathology & immunohistochemistry, Liquid biopsy (ctDNA), PET/CT, DNA methylation profiling.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- First line, fit patients: Platinum-based doublet (carboplatin-paclitaxel or gemcitabine-cisplatin) for three cycles, then continuation or a switch to molecularly guided therapy where an actionable alteration is found (CUPISCO). (Carboplatin, Paclitaxel / nab-paclitaxel, Gemcitabine + cisplatin, CUPISCO, Platinum agents)
- Actionable alterations: Tumour-agnostic therapies: pembrolizumab or nivolumab for MSI-high or high tumour mutational burden, NTRK inhibitors, BRAF and MEK inhibitors, HER2-directed therapy. (Pembrolizumab, Nivolumab, Tumour-agnostic (tissue-agnostic) approval, Comprehensive genomic profiling)
- Poor performance status: Best supportive care with early palliative care involvement. (Pain relief and palliative care are unavailable to most)
- Second line: Alternative chemotherapy, PD-1 antibody if not given (nivolumab approved in Japan), or trial entry; trials of antibody-drug conjugates and immunotherapy combinations. (Nivolumab, Pembrolizumab, A Phase II/III Study of F520 Combined With Paclitaxel Plus Carboplatin in the Treatment of Cancer of Unknown Primary (CUP))
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 browserWhat I was told
Agreed next steps, dates and who to call