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Living with cancer· Appointment prep

Appointment sheet: Ductal carcinoma in situ (DCIS)

One page to bring and write on: your details, the questions for Ductal carcinoma in situ (DCIS) 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

Ductal carcinoma in situ (DCIS)

Prepared with OnCo (onco.cc/prep/ductal-carcinoma-in-situ/). 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

15 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 Nuclear grade and necrosis, ER and PR status, HER2 status, Margin width, Oncotype DX DCIS Score or DCISionRT), 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 DCIS, breast conservation
  1. 5.For my situation (localised dcis, breast conservation), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Oncotype DX, and what side effects should I expect?
Extensive or multicentric DCIS
  1. 7.For my situation (extensive or multicentric dcis), which of the standard options do you recommend and why?
ER-positive DCIS after breast conservation
  1. 8.For my situation (er-positive dcis after breast conservation), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Tamoxifen, and what side effects should I expect?
Low-risk DCIS
  1. 10.For my situation (low-risk dcis), which of the standard options do you recommend and why?
Any stage
  1. 11.Are there clinical trials I could join, for example of Active surveillance, Oncotype DX, Tamoxifen?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Distinguishing DCIS that would progress from DCIS that would not; molecular classifiers, mammographic AI and the monitoring trials are the route”. How does that affect my plan?
  5. 15.I read that “Long-term safety of active monitoring beyond two years; LORIS and LORD follow-up and the COMET ten-year endpoint will tell”. How does that affect my plan?

The words I may hear

  • In situ: Latin for 'in place': abnormal cells that look like cancer but have not yet broken through the layer they started in.
  • Ductal carcinoma in situ (DCIS): Breast cancer cells confined inside the milk ducts, found mostly by mammography as calcifications.
  • Lumpectomy (breast-conserving surgery): Removing only the tumour with a rim of normal breast, keeping the breast; almost always followed by radiotherapy.
  • Carcinoma in situ (CIS): Cancer cells that fill the lining layer where they started but have not broken through the basement membrane into the tissue beneath.
  • Mastectomy: Removing the whole breast, either for cancer or preventively in BRCA1/2 carriers, where bilateral risk-reducing mastectomy cuts breast cancer risk by 90% or more.

Tests and results to bring

Biomarker results to ask for: Nuclear grade and necrosis, ER and PR status, HER2 status (not used to select therapy outside trials), Margin width (2 mm standard after breast conservation), Oncotype DX DCIS Score or DCISionRT (radiotherapy omission decisions), Extent on mammography and MRI.

Scans and tests linked to this cancer: Active surveillance, Companion diagnostics, Mammography & tomosynthesis, MRI, AI in radiology, RNA sequencing & expression profiling.

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