Appointment sheet
High-risk gestational trophoblastic neoplasia (FIGO score 7 or more, including ultra-high-risk)
Prepared with OnCo (onco.cc/prep/high-risk-gtn/). 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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
18 on the sheetNewly 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 Serum hCG, FIGO 2000 score, Sites of metastasis on CT, MRI of brain and pelvic ultrasound, Cerebrospinal fluid to serum hCG ratio, Genotyping to confirm gestational origin and identify the causative pregnancy), 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?
Staging
- 5.For my situation (staging), which of the standard options do you recommend and why?
High-risk disease, first line
- 6.For my situation (high-risk disease, first line), which of the standard options do you recommend and why?
- 7.Am I a candidate for Etoposide, Methotrexate, Dactinomycin (actinomycin D) or related drugs, and what side effects should I expect?
Ultra-high-risk disease
- 8.For my situation (ultra-high-risk disease), which of the standard options do you recommend and why?
- 9.Am I a candidate for Etoposide, Cisplatin, and what side effects should I expect?
Brain metastases
- 10.For my situation (brain metastases), which of the standard options do you recommend and why?
- 11.Am I a candidate for Methotrexate, and what side effects should I expect?
Resistant or relapsed disease
- 12.For my situation (resistant or relapsed disease), which of the standard options do you recommend and why?
- 13.Am I a candidate for Etoposide, Cisplatin, Paclitaxel / nab-paclitaxel or related drugs, and what side effects should I expect?
Any stage
- 14.Are there clinical trials I could join, for example of Pembrolizumab, Avelumab?
- 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 17.I read that “EMA-CO has never been tested against any other regimen in a randomised trial”. How does that affect my plan?
- 18.I read that “Late diagnosis of choriocarcinoma after term pregnancy still costs lives”. How does that affect my plan?
The words I may hear
- Disease-specific staging and risk systems (FIGO, Ann Arbor, IPI, R-ISS, ELN, IMDC): Beyond the generic TNM system, gynaecological cancers (FIGO), lymphoma (Ann Arbor, IPI), myeloma (R-ISS), AML (ELN), kidney cancer (IMDC), neuroblastoma (INRG) and CLL (Rai, Binet) each have their own system that combines stage, blood tests, genetics and fitness into risk groups.
- Tumour markers (CEA, LDH, chromogranin, thyroglobulin): Substances released into the blood by some cancers that can be measured with a simple test, useful for tracking whether treatment is working or the cancer is coming back, but rarely good enough to diagnose or screen.
Tests and results to bring
Staging: hCG, chest CT, brain MRI, abdominal imaging, pelvic Doppler ultrasound and FIGO scoring; genotyping where the antecedent pregnancy is unclear.
Biomarker results to ask for: Serum hCG (very high; response and surveillance), FIGO 2000 score (7 or more high risk; 13 or more ultra-high risk), Sites of metastasis on CT, MRI of brain and pelvic ultrasound (liver and brain define ultra-high risk), Cerebrospinal fluid to serum hCG ratio (brain involvement), Genotyping to confirm gestational origin and identify the causative pregnancy, PD-L1 expression (universal; checkpoint inhibitor rationale).
Scans and tests linked to this cancer: CT (computed tomography), MRI, PET/CT, Serum tumour markers: proper use and misuse, Ultrasound.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- High-risk disease, first line: EMA-CO (etoposide, methotrexate, actinomycin D alternating with cyclophosphamide and vincristine) until hCG normalises plus at least three consolidation cycles. (Etoposide, Methotrexate, Dactinomycin (actinomycin D), Cyclophosphamide, Vincristine, Cytotoxic chemotherapy)
- Ultra-high-risk disease: Induction low-dose etoposide and cisplatin for one to three cycles before EMA-CO to prevent early death from haemorrhage and organ failure. (Etoposide, Cisplatin)
- Brain metastases: High-dose systemic and intrathecal methotrexate within EMA-CO, with whole-brain or stereotactic radiotherapy or craniotomy for bleeding or single lesions. (Methotrexate, IMRT / IGRT (modern external beam), SBRT / SABR (stereotactic radiotherapy))
- Resistant or relapsed disease: EP-EMA or TP/TE; resection of a resistant focus (hysterectomy, lung wedge); pembrolizumab or avelumab; high-dose chemotherapy with autologous rescue in exceptional cases. (Etoposide, Cisplatin, Paclitaxel / nab-paclitaxel, Pembrolizumab, Avelumab, Autologous stem cell transplant (high-dose therapy), PET/CT)
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 browserWhat I was told
Agreed next steps, dates and who to call