Appointment sheet
Cancer of unknown primary, favourable subsets
Prepared with OnCo (onco.cc/prep/cup-favourable-subsets/). 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
20 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 Directed immunohistochemistry panel, Serum PSA, alpha-fetoprotein and hCG, CA-125, HPVand EBV testing in cervical node squamous carcinoma, Oestrogen receptor and HER2 in axillary node adenocarcinoma, Tissue-of-origin classifier), 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?
Axillary node adenocarcinoma in a woman
- 6.For my situation (axillary node adenocarcinoma in a woman), which of the standard options do you recommend and why?
Peritoneal serous carcinoma in a woman
- 7.For my situation (peritoneal serous carcinoma in a woman), which of the standard options do you recommend and why?
- 8.Am I a candidate for Carboplatin, Paclitaxel / nab-paclitaxel, and what side effects should I expect?
Cervical node squamous carcinoma
- 9.For my situation (cervical node squamous carcinoma), which of the standard options do you recommend and why?
- 10.Am I a candidate for Cisplatin, and what side effects should I expect?
Midline poorly differentiated carcinoma in a young man
- 11.For my situation (midline poorly differentiated carcinoma in a young man), which of the standard options do you recommend and why?
- 12.Am I a candidate for Cisplatin, Etoposide, and what side effects should I expect?
Neuroendocrine carcinoma of unknown primary
- 13.For my situation (neuroendocrine carcinoma of unknown primary), which of the standard options do you recommend and why?
- 14.Am I a candidate for Platinum + etoposide (EP / CE), Somatostatin analogues (octreotide, lanreotide), Lutetium-177 dotatate, and what side effects should I expect?
Single metastasis
- 15.For my situation (single metastasis), which of the standard options do you recommend and why?
Any stage
- 16.Are there clinical trials I could join, for example of Comprehensive genomic profiling, DNA methylation profiling, Liquid biopsy (ctDNA)?
- 17.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 18.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 19.I read that “Some favourable subsets rest on small series decades old”. How does that affect my plan?
- 20.I read that “Whether a tissue-of-origin classifier should ever override the clinical picture is unsettled”. 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.
- 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.
- Tumour markers (CEA, LDH, chromogranin, thyroglobulin): Substances released into the blood by some cancers that can be measured with a simple test, useful for tracking whether treatment is working or the cancer is coming back, but rarely good enough to diagnose or screen.
- HPV-positive (p16) head and neck cancer: Throat cancers caused by the human papillomavirus, identified by a p16 stain.
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
- Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.
Tests and results to bring
Work-up: Histology with directed immunohistochemistry, CT of chest, abdomen and pelvis, sex-specific examinations and tumour markers, PET-CT for cervical node squamous carcinoma and single-site disease.
Biomarker results to ask for: Directed immunohistochemistry panel (CK7, CK20, CDX2, GATA3, PAX8, TTF-1, NKX3.1, p16, SOX10), Serum PSA (men), alpha-fetoprotein and hCG (young patients), CA-125 (women), HPV (p16) and EBV testing in cervical node squamous carcinoma, Oestrogen receptor and HER2 in axillary node adenocarcinoma, Tissue-of-origin classifier (gene expression or methylation, supportive), Ki-67 and neuroendocrine markers where neuroendocrine carcinoma is suspected.
Scans and tests linked to this cancer: AFP, hCG and LDH in germ cell tumours (IGCCCG risk groups), Comprehensive genomic profiling, CT (computed tomography), Histopathology & immunohistochemistry, Liquid biopsy (ctDNA), PET/CT.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Axillary node adenocarcinoma in a woman: Treat as node-positive breast cancer: axillary dissection, breast radiotherapy or mastectomy, systemic therapy by receptor status. (Lymphadenectomy (lymph node dissection), IMRT / IGRT (modern external beam))
- Peritoneal serous carcinoma in a woman: Treat as advanced ovarian cancer: cytoreductive surgery and carboplatin-paclitaxel with maintenance as indicated. (Carboplatin, Paclitaxel / nab-paclitaxel, Debulking (cytoreductive surgery))
- Cervical node squamous carcinoma: Treat as head and neck cancer: HPV and EBV testing, neck dissection or chemoradiotherapy with cisplatin. (Cisplatin, IMRT / IGRT (modern external beam), Chemoradiation (chemoradiotherapy, CRT), HPV-positive (p16) head and neck cancer)
- Midline poorly differentiated carcinoma in a young man: Treat as extragonadal germ cell tumour with cisplatin-based combination chemotherapy. (Cisplatin, Etoposide, AFP, hCG and LDH in germ cell tumours (IGCCCG risk groups))
- Neuroendocrine carcinoma of unknown primary: Platinum-etoposide as for extrapulmonary neuroendocrine carcinoma; somatostatin analogues and radioligand therapy for well-differentiated tumours. (Platinum + etoposide (EP / CE), Somatostatin analogues (octreotide, lanreotide), Lutetium-177 dotatate)
- Single metastasis: Resection or stereotactic radiotherapy with curative intent. (SBRT / SABR (stereotactic radiotherapy))
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