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Living with cancer· Appointment prep

Appointment sheet: Goblet cell adenocarcinoma of the appendix

One page to bring and write on: your details, the questions for Goblet cell adenocarcinoma of the appendix 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

Goblet cell adenocarcinoma of the appendix

Prepared with OnCo (onco.cc/prep/goblet-cell-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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

16 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 WHO 2019 grade, TNM stage after right hemicolectomy, Synaptophysin and chromograninwith mucin stains, Somatostatin receptor status, CEA, CA 19-9 and CA-125 for surveillance), 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?
Diagnosis
  1. 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Localised disease
  1. 6.For my situation (localised disease), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), and what side effects should I expect?
Peritoneal metastases
  1. 8.For my situation (peritoneal metastases), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?
Metastatic disease
  1. 10.For my situation (metastatic disease), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), FOLFIRI (5-FU, leucovorin, irinotecan), and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of FOLFOX (5-FU, leucovorin, oxaliplatin), HIPEC / PIPAC (intraperitoneal chemotherapy)?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “No prospective trial has ever been conducted; all treatment is extrapolated”. How does that affect my plan?
  5. 16.I read that “The benefit of adjuvant chemotherapy in grade 1 node-negative disease is unknown”. 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.
  • Endoscopy (EGD, EUS, ERCP): Looking inside a hollow organ with a camera on a flexible tube, taking biopsies and sometimes treating on the spot.
  • Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.

Tests and results to bring

Diagnosis: Expert pathology review with WHO 2019 grading; CT of chest, abdomen and pelvis; colonoscopy; tumour markers; no somatostatin receptor imaging is needed.

Biomarker results to ask for: WHO 2019 grade (proportion of low-grade tubular pattern), TNM stage after right hemicolectomy, Synaptophysin and chromogranin (focal) with mucin stains (diagnosis), Somatostatin receptor status (negative; not a target), CEA, CA 19-9 and CA-125 for surveillance, Peritoneal cancer index where peritoneal disease is present.

Scans and tests linked to this cancer: CT (computed tomography), Histopathology & immunohistochemistry.

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