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Appointment sheet: Placental-site trophoblastic tumour and epithelioid trophoblastic tumour

One page to bring and write on: your details, the questions for Placental-site trophoblastic tumour and epithelioid trophoblastic tumour 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

Placental-site trophoblastic tumour and epithelioid trophoblastic tumour

Prepared with OnCo (onco.cc/prep/placental-site-trophoblastic-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

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 Serum hCG, Human placental lactogen by immunohistochemistryand p63, Interval since the antecedent pregnancy, Stage, depth of myometrial invasion and mitotic count, Genotyping to confirm gestational origin and identify the causative pregnancy), 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?
Disease confined to the uterus
  1. 6.For my situation (disease confined to the uterus), which of the standard options do you recommend and why?
Metastatic disease or interval over four years
  1. 7.For my situation (metastatic disease or interval over four years), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Etoposide, Cisplatin, Methotrexate or related drugs, and what side effects should I expect?
Resistant disease
  1. 9.For my situation (resistant disease), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Pembrolizumab, and what side effects should I expect?
Follow-up
  1. 11.For my situation (follow-up), which of the standard options do you recommend and why?
Any stage
  1. 12.Are there clinical trials I could join, for example of Pembrolizumab?
  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 “Numbers are too small for any trial; all treatment rests on registry series”. How does that affect my plan?
  5. 16.I read that “hCG is an unreliable marker, so recurrence can be missed”. How does that affect my plan?

The words I may hear

Tests and results to bring

Diagnosis: Expert pathology with immunohistochemistry (human placental lactogen, p63, Ki-67) and genotyping; pelvic MRI, chest CT and FDG-PET; registration with a trophoblastic disease centre.

Biomarker results to ask for: Serum hCG (low or normal; high hCG-free beta subunit fraction), Human placental lactogen by immunohistochemistry (PSTT) and p63 (ETT), Interval since the antecedent pregnancy (over four years predicts poor outcome), Stage, depth of myometrial invasion and mitotic count, Genotyping to confirm gestational origin and identify the causative pregnancy, FDG-PET/CT for residual or metastatic disease.

Scans and tests linked to this cancer: CT (computed tomography), Histopathology & immunohistochemistry, MRI, PET/CT.

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