Appointment sheet
Appendiceal adenocarcinoma (mucinous and non-mucinous, including signet ring cell)
Prepared with OnCo (onco.cc/prep/appendiceal-adenocarcinoma/). 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
17 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 Histological subtype and grade, TNM stage after right hemicolectomy, Peritoneal cancer index and completeness of cytoreduction, KRAS, GNAS, TP53 and SMAD4 mutations, Mismatch repair and microsatellite status), 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?
Localised disease
- 5.For my situation (localised disease), which of the standard options do you recommend and why?
- 6.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), and what side effects should I expect?
Peritoneal metastases, resectable
- 7.For my situation (peritoneal metastases, resectable), which of the standard options do you recommend and why?
- 8.Am I a candidate for Mitomycin C, FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), and what side effects should I expect?
Unresectable or distant metastatic disease
- 9.For my situation (unresectable or distant metastatic disease), which of the standard options do you recommend and why?
- 10.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), Bevacizumab or related drugs, and what side effects should I expect?
Signet ring cell carcinoma with extensive peritoneal disease
- 11.For my situation (signet ring cell carcinoma with extensive peritoneal disease), which of the standard options do you recommend and why?
- 12.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), and what side effects should I expect?
Any stage
- 13.Are there clinical trials I could join, for example of FOLFOX (5-FU, leucovorin, oxaliplatin), HIPEC / PIPAC (intraperitoneal chemotherapy), Pembrolizumab?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “No adjuvant chemotherapy trial has ever been run in appendiceal adenocarcinoma”. How does that affect my plan?
- 17.I read that “Which patients with peritoneal disease benefit from HIPEC is defined only by retrospective series”. How does that affect my plan?
The words I may hear
- HIPEC (hyperthermic intraperitoneal chemotherapy): After surgeons remove all visible tumour from the abdominal lining, the abdomen is bathed for 60-90 minutes in heated chemotherapy to kill the microscopic cells left behind.
- Colectomy: Removing the part of the colon containing the cancer along with its blood supply and lymph nodes, then joining the ends.
- Peritoneal metastasis: Spread across the lining of the abdomen, the most common way stomach cancer recurs and the hardest to treat.
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
- 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
Biomarker results to ask for: Histological subtype and grade (mucinous, non-mucinous, signet ring), TNM stage after right hemicolectomy, Peritoneal cancer index and completeness of cytoreduction, KRAS, GNAS, TP53 and SMAD4 mutations, Mismatch repair and microsatellite status (uncommon deficiency), CEA, CA 19-9 and CA-125.
Scans and tests linked to this cancer: CT (computed tomography), MRI.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Localised disease: Right hemicolectomy with lymphadenectomy; adjuvant FOLFOX or CAPOX for node-positive or high-risk stage II disease, extrapolated from colon cancer. (Colectomy, Lymphadenectomy (lymph node dissection), FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin))
- Peritoneal metastases, resectable: Cytoreductive surgery with HIPEC (mitomycin or oxaliplatin) in fit patients with limited disease and favourable histology, with perioperative systemic chemotherapy. (HIPEC / PIPAC (intraperitoneal chemotherapy), HIPEC (hyperthermic intraperitoneal chemotherapy), Mitomycin C, FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), Peritoneal metastasis)
- Unresectable or distant metastatic disease: FOLFOX or CAPOX with or without bevacizumab; FOLFIRI in second line; pembrolizumab for mismatch-repair-deficient tumours. (FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), Bevacizumab, FOLFIRI (5-FU, leucovorin, irinotecan), Pembrolizumab, Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR))
- Signet ring cell carcinoma with extensive peritoneal disease: Systemic chemotherapy first; cytoreduction only for exceptional responders. (FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), HIPEC / PIPAC (intraperitoneal chemotherapy))
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