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Living with cancer· Appointment prep

Appointment sheet: Phyllodes tumour of the breast

One page to bring and write on: your details, the questions for Phyllodes tumour of the breast 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

Phyllodes tumour of the breast

Prepared with OnCo (onco.cc/prep/phyllodes-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 WHO grade from stromal cellularity, atypia, mitotic count, stromal overgrowth and border, Margin status after excision, Tumour size relative to the breast, MED12 mutationand TERT promoter mutation, No routine hormone receptor or HER2 testing), 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?
Benign phyllodes tumour
  1. 6.For my situation (benign phyllodes tumour), which of the standard options do you recommend and why?
Borderline and malignant phyllodes tumour
  1. 7.For my situation (borderline and malignant phyllodes tumour), which of the standard options do you recommend and why?
Metastatic malignant phyllodes tumour
  1. 8.For my situation (metastatic malignant phyllodes tumour), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Doxorubicin, and what side effects should I expect?
Any stage
  1. 10.Are there clinical trials I could join, for example of IMRT / IGRT (modern external beam)?
  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 “No randomised trial has tested margin width or radiotherapy”. How does that affect my plan?
  5. 14.I read that “Core biopsy cannot reliably distinguish phyllodes tumour from fibroadenoma”. How does that affect my plan?

The words I may hear

  • Core needle biopsy and fine-needle aspiration (FNA): Taking a sliver of tissue (core) or a few cells (fine-needle aspiration) through a needle guided by ultrasound, CT or MRI, to diagnose the cancer and test its markers without surgery.
  • Lumpectomy (breast-conserving surgery): Removing only the tumour with a rim of normal breast, keeping the breast; almost always followed by radiotherapy.
  • 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

Diagnosis: Ultrasound and mammography, core needle biopsy, and excision of any rapidly growing or large fibroepithelial lesion because biopsy cannot reliably separate phyllodes tumour from fibroadenoma.

Biomarker results to ask for: WHO grade from stromal cellularity, atypia, mitotic count, stromal overgrowth and border (benign, borderline, malignant), Margin status after excision, Tumour size relative to the breast, MED12 mutation (shared with fibroadenoma) and TERT promoter mutation (borderline and malignant), No routine hormone receptor or HER2 testing (stroma-driven tumour), Chest CT for metastases in malignant tumours.

Scans and tests linked to this cancer: Histopathology & immunohistochemistry, Mammography & tomosynthesis, Ultrasound.

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