Appointment sheet
Low-risk gestational trophoblastic neoplasia (FIGO score 0 to 6)
Prepared with OnCo (onco.cc/prep/low-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
16 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 Serial serum hCG, FIGO 2000 prognostic score, Pelvic ultrasound and chest imaging for staging, Pretreatment hCG level, Genotyping to confirm gestational origin where uncertain), 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?
Diagnosis and staging
- 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
First line
- 6.For my situation (first line), which of the standard options do you recommend and why?
- 7.Am I a candidate for Methotrexate, Dactinomycin (actinomycin D), and what side effects should I expect?
Resistance to first agent
- 8.For my situation (resistance to first agent), which of the standard options do you recommend and why?
- 9.Am I a candidate for Dactinomycin (actinomycin D), Methotrexate, Etoposide or related drugs, and what side effects should I expect?
Surgery
- 10.For my situation (surgery), which of the standard options do you recommend and why?
Follow-up
- 11.For my situation (follow-up), which of the standard options do you recommend and why?
Any stage
- 12.Are there clinical trials I could join, for example of Avelumab, Pembrolizumab?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “Methotrexate and actinomycin D have never been compared head to head with the regimens most centres use”. How does that affect my plan?
- 16.I read that “Which resistant patients should receive immunotherapy rather than EMA-CO is not settled”. 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
Diagnosis and staging: Serial hCG after molar evacuation; pelvic Doppler ultrasound and chest X-ray or CT; FIGO scoring; no biopsy needed.
Biomarker results to ask for: Serial serum hCG (diagnosis, response, surveillance), FIGO 2000 prognostic score (0 to 6 low risk), Pelvic ultrasound and chest imaging for staging, Pretreatment hCG level (predicts single-agent resistance), Genotyping to confirm gestational origin where uncertain, PD-L1 expression (near universal; checkpoint inhibitor rationale).
Scans and tests linked to this cancer: 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
- Surgery: Second uterine evacuation in selected women with low hCG; hysterectomy for women who have completed their families or with uncontrolled bleeding. (Oncofertility and fertility preservation)
- First line: Single-agent methotrexate with folinic acid (eight-day regimen) or pulsed actinomycin D (GOG 174), continued until hCG normalises plus three consolidation cycles. (Methotrexate, Dactinomycin (actinomycin D), Cytotoxic chemotherapy)
- Follow-up: hCG monitoring for twelve months after remission, contraception during follow-up, and hCG after every future pregnancy. (Tumour markers (CEA, LDH, chromogranin, thyroglobulin))
- Resistance to first agent: Switch to the alternative single agent if hCG is low; EMA-CO if hCG is high; avelumab or pembrolizumab as chemotherapy-sparing options (TROPHIMMUN). (Dactinomycin (actinomycin D), Methotrexate, Etoposide, Cyclophosphamide, Vincristine, Avelumab, Pembrolizumab)
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