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: NUT carcinoma (midline carcinoma with NUTM1 rearrangement)

One page to bring and write on: your details, the questions for NUT carcinoma (midline carcinoma with NUTM1 rearrangement) 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

NUT carcinoma (midline carcinoma with NUTM1 rearrangement)

Prepared with OnCo (onco.cc/prep/nut-carcinoma/). 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

12 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 NUT immunohistochemistry, NUTM1 fusion by FISH or RNA sequencing, Fusion partner, Site), 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?
Localised
  1. 5.For my situation (localised), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Ifosfamide, Cisplatin, and what side effects should I expect?
Advanced or relapsed
  1. 7.For my situation (advanced or relapsed), which of the standard options do you recommend and why?
Any stage
  1. 8.Are there clinical trials I could join, for example of ZEN-3694, ZEN-3694 with platinum chemotherapy in NUT carcinoma (NCI phase 1/2), ZEN-3694 with abemaciclib in NUT carcinoma, breast cancer and other solid tumours (NCI phase 1), Cemiplimab in metastatic or unresectable NUT carcinoma (Northwestern pilot)?
  2. 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 10.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 11.I read that “Misdiagnosis and delay: NUT immunohistochemistry should be routine in poorly differentiated midline tumours”. How does that affect my plan?
  5. 12.I read that “BET inhibitor responses are short: degraders, CDK9 and HDAC combinations, and chemotherapy combinations are in trials”. How does that affect my plan?

The words I may hear

  • Gene fusion: A gene fusion is two genes broken and joined together, creating a hybrid protein that can drive cancer.
  • Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.

Tests and results to bring

Biomarker results to ask for: NUT immunohistochemistry (C52 antibody, nuclear speckled), NUTM1 fusion by FISH or RNA sequencing, Fusion partner (non-BRD4 partners associated with longer survival in the registry), Site (thoracic vs non-thoracic).

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