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All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Newly diagnosed: What is my exact diagnosis, stage, and grade, and which tests established them?

Newly diagnosed: Which biomarkers have been tested on my tumour (for example EWSR1-WT1 fusion; WT1 C-terminus immunohistochemistry, Polyphenotypic staining, Peritoneal cancer index and completeness of cytoreduction, PDGFR-alpha and VEGF expression), and what were the results?

Newly diagnosed: Which subtype is my cancer, and does that change the recommended treatment?

Newly diagnosed: Is germline (inherited) genetic testing recommended for me or my family?

All cases: For my situation (all cases), which of the standard options do you recommend and why?

All cases: Am I a candidate for Vincristine, Doxorubicin, Cyclophosphamide or related drugs, and what side effects should I expect?

Any stage: Would a second opinion at a high-volume centre change anything, and can you help arrange it?

Any stage: What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?

Appointment sheet

Desmoplastic small round cell tumour

Prepared with OnCo (onco.cc/prep/desmoplastic-small-round-cell-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

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What I know so far

What is unclear to me

Changes since last time

My questions

8 on the sheet

Newly diagnosed

1.What is my exact diagnosis, stage, and grade, and which tests established them?
2.Which biomarkers have been tested on my tumour (for example EWSR1-WT1 fusion; WT1 C-terminus immunohistochemistry, Polyphenotypic staining, Peritoneal cancer index and completeness of cytoreduction, PDGFR-alpha and VEGF expression), and what were the results?
3.Which subtype is my cancer, and does that change the recommended treatment?
4.Is germline (inherited) genetic testing recommended for me or my family?

All cases

5.For my situation (all cases), which of the standard options do you recommend and why?
6.Am I a candidate for Vincristine, Doxorubicin, Cyclophosphamide or related drugs, and what side effects should I expect?

Any stage

7.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
8.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?

Tests and results to bring

Biomarker results to ask for: EWSR1-WT1 fusion (FISH or RT-PCR); WT1 C-terminus immunohistochemistry, Polyphenotypic staining (cytokeratin, desmin, neural markers), Peritoneal cancer index and completeness of cytoreduction, PDGFR-alpha and VEGF expression (targets).

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

The treatments I may be offered

All cases: Ewing-type multi-agent chemotherapy, complete cytoreductive surgery with or without hyperthermic intraperitoneal chemotherapy, radiotherapy in some centres; pazopanib, sunitinib or mTOR inhibitors on relapse; trials recommended. (Sarcomas (soft tissue, bone, GIST), Vincristine, Doxorubicin, Cyclophosphamide, Ifosfamide, Etoposide, HIPEC / PIPAC (intraperitoneal chemotherapy), Pazopanib, Sunitinib)

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

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What I was told

Agreed next steps, dates and who to call

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