OnCo

Create your OnCo account

One account keeps your watchlist, saved views and cancer choice in sync across your devices, and lets OnCo alert you when a trial or treatment you follow changes. No password: we email you a sign-in link.

Account creation is being switched on. Until then, press Watch on any page and your list stays in this browser.

Living with cancer· Appointment prep

Appointment sheet: Desmoid tumour

One page to bring and write on: your details, the questions for Desmoid tumour 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

Desmoid tumour

Prepared with OnCo (onco.cc/prep/desmoid-tumour/). 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

14 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 CTNNB1 mutation type, Germline APC testing when intra-abdominal or multifocal, Nuclear beta-catenin immunostaining, MRI T2 signal, Symptom and pain scores), 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?
Newly diagnosed, asymptomatic or minimally symptomatic
  1. 5.For my situation (newly diagnosed, asymptomatic or minimally symptomatic), which of the standard options do you recommend and why?
Progressive or symptomatic disease
  1. 6.For my situation (progressive or symptomatic disease), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Nirogacestat, Sorafenib, Methotrexate, and what side effects should I expect?
  3. 8.How do the results of DeFi apply to someone like me?
Surgery
  1. 9.For my situation (surgery), which of the standard options do you recommend and why?
Any stage
  1. 10.Are there clinical trials I could join, for example of Nirogacestat, Intermittent or stop-and-restart nirogacestat in desmoid tumours, DeFi, Varegacestat?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “Ovarian toxicity of gamma-secretase inhibitors in young women: dose interruption and intermittent schedules are being explored”. How does that affect my plan?
  5. 14.I read that “Optimal treatment duration and whether responses persist after stopping nirogacestat”. How does that affect my plan?

The words I may hear

  • Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.

Tests and results to bring

Newly diagnosed, asymptomatic or minimally symptomatic: Active surveillance with MRI at 1 to 2 months, then every 3 to 6 months; treat only on progression or symptoms.

Biomarker results to ask for: CTNNB1 mutation type (S45F associated with higher recurrence), Germline APC testing when intra-abdominal or multifocal, Nuclear beta-catenin immunostaining, MRI T2 signal (hypointense tumours are more likely to be stable or regressing), Symptom and pain scores (treatment triggers).

Scans and tests linked to this cancer: Active surveillance, MRI.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Surgery: Reserved for selected abdominal wall tumours or complications (bowel obstruction, fistula); margins do not reliably predict recurrence. (Limb-salvage surgery and endoprosthetic reconstruction)
  • Progressive or symptomatic disease: Nirogacestat (DeFi) or sorafenib (Alliance A091105); alternatives include methotrexate-vinblastine, vinorelbine, anthracycline-based chemotherapy for rapidly progressive disease, and cryoablation for accessible extra-abdominal tumours. (Nirogacestat, Sorafenib, DeFi, Methotrexate)

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