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Living with cancer· Appointment prep

Appointment sheet: Vascular tumours (angiosarcoma, epithelioid haemangioendothelioma, kaposiform haemangioendothelioma)

One page to bring and write on: your details, the questions for Vascular tumours (angiosarcoma, epithelioid haemangioendothelioma, kaposiform haemangioendothelioma) 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

Vascular tumours (angiosarcoma, epithelioid haemangioendothelioma, kaposiform haemangioendothelioma)

Prepared with OnCo (onco.cc/prep/vascular-tumours/). 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 ERG, CD31, CD34 endothelial markers, MYC amplification, WWTR1-CAMTA1 or YAP1-TFE3 fusion, Tumour mutational burden and UV signature, Platelet count and fibrinogen), 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 angiosarcoma
  1. 5.For my situation (localised angiosarcoma), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Paclitaxel / nab-paclitaxel, and what side effects should I expect?
Advanced angiosarcoma
  1. 7.For my situation (advanced angiosarcoma), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Paclitaxel / nab-paclitaxel, Doxorubicin, Pazopanib or related drugs, and what side effects should I expect?
Epithelioid haemangioendothelioma
  1. 9.For my situation (epithelioid haemangioendothelioma), which of the standard options do you recommend and why?
Kaposiform haemangioendothelioma with Kasabach-Merritt
  1. 10.For my situation (kaposiform haemangioendothelioma with kasabach-merritt), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Vincristine, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Immune checkpoint inhibitors, Paclitaxel / nab-paclitaxel, Pazopanib?
  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 “Angiosarcoma outside the UV-exposed skin remains chemoresistant: immunotherapy combinations and antiangiogenic agents are being tested”. How does that affect my plan?
  5. 16.I read that “EHE: which patients will progress, and TEAD inhibitors as the first fusion-directed therapy”. 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

Biomarker results to ask for: ERG, CD31, CD34 endothelial markers, MYC amplification (radiation-associated angiosarcoma), WWTR1-CAMTA1 or YAP1-TFE3 fusion (EHE), Tumour mutational burden and UV signature (cutaneous angiosarcoma), Platelet count and fibrinogen (Kasabach-Merritt in KHE).

Scans and tests linked to this cancer: Active surveillance.

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