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Living with cancer· Appointment prep

Appointment sheet: Low-grade appendiceal mucinous neoplasm and pseudomyxoma peritonei

One page to bring and write on: your details, the questions for Low-grade appendiceal mucinous neoplasm and pseudomyxoma peritonei 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

Low-grade appendiceal mucinous neoplasm and pseudomyxoma peritonei

Prepared with OnCo (onco.cc/prep/low-grade-appendiceal-mucinous-neoplasm/). 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 PSOGI grade of the peritoneal disease, Peritoneal cancer indexand completeness of cytoreduction score, GNAS mutation, KRAS; TP53 and SMAD4, CEA, CA 19-9 and CA-125, Perforation and extra-appendiceal mucin on the appendicectomy specimen), 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?
LAMN confined to the appendix
  1. 5.For my situation (lamn confined to the appendix), which of the standard options do you recommend and why?
Pseudomyxoma peritonei, resectable
  1. 6.For my situation (pseudomyxoma peritonei, resectable), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Mitomycin C, and what side effects should I expect?
High-grade pseudomyxoma peritonei
  1. 8.For my situation (high-grade pseudomyxoma peritonei), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), and what side effects should I expect?
Unresectable or recurrent disease
  1. 10.For my situation (unresectable or recurrent disease), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of HIPEC / PIPAC (intraperitoneal chemotherapy), HIPEC perfusion pumps and PIPAC nebulisers?
  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 “Cytoreduction with HIPEC has never been compared with cytoreduction alone in this disease”. How does that affect my plan?
  5. 16.I read that “Recurrence after complete cytoreduction is common and criteria for reoperation vary”. How does that affect my plan?

The words I may hear

  • 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.
  • 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.
  • Peritoneum and peritoneal metastases: The thin membrane lining the abdominal cavity and covering the bowel.
  • Peritoneal metastasis: Spread across the lining of the abdomen, the most common way stomach cancer recurs and the hardest to treat.

Tests and results to bring

Biomarker results to ask for: PSOGI grade of the peritoneal disease (acellular, low, high, signet ring), Peritoneal cancer index (extent) and completeness of cytoreduction score, GNAS mutation (low grade), KRAS; TP53 and SMAD4 (high grade), CEA, CA 19-9 and CA-125 (prognosis and surveillance), Perforation and extra-appendiceal mucin on the appendicectomy specimen.

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

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