The first 60 days: High-risk gestational trophoblastic neoplasia (FIGO score 7 or more, including ultra-high-risk)
High-risk gestational trophoblastic neoplasia is the aggressive form of this pregnancy-related cancer, usually choriocarcinoma that has spread to the lungs, liver or brain and produces very high hCG. It is treated with the multi-drug EMA-CO regimen, started gently in the sickest women to avoid early deaths, and most are cured; resistant disease gets platinum regimens, immunotherapy or surgery. Below, week by week, is what OnCo's record of High-risk gestational trophoblastic neoplasia (FIGO score 7 or more, including ultra-high-risk) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
hCG, chest CT, brain MRI, abdominal imaging, pelvic Doppler ultrasound and FIGO scoring; genotyping where the antecedent pregnancy is unclear.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- RadiologistNamed in the standard of care for: Staging, Resistant or relapsed disease.
- SurgeonNamed in the standard of care for: High-risk disease, first line, Resistant or relapsed disease.
- Medical oncologistNamed in the standard of care for: High-risk disease, first line, Ultra-high-risk disease, Brain metastases, Resistant or relapsed disease.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Brain metastases.
- Transplant and cell therapy teamNamed in the standard of care for: High-risk disease, first line, Ultra-high-risk disease, Resistant or relapsed disease.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
EMA-CO (etoposide, methotrexate, actinomycin D alternating with cyclophosphamide and vincristine) until hCG normalises plus at least three consolidation cycles.
Induction low-dose etoposide and cisplatin for one to three cycles before EMA-CO to prevent early death from haemorrhage and organ failure.
High-dose systemic and intrathecal methotrexate within EMA-CO, with whole-brain or stereotactic radiotherapy or craniotomy for bleeding or single lesions.
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.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include High-risk gestational choriocarcinoma with lung metastases, Ultra-high-risk gestational trophoblastic neoplasia, Gestational trophoblastic neoplasia with liver metastases.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Staging
- For my situation (staging), which of the standard options do you recommend and why?Guideline options include: hCG, chest CT, brain MRI, abdominal imaging, pelvic Doppler ultrasound and FIGO scoring; genotyping where the antecedent pregnancy is unclear.
High-risk disease, first line
- For my situation (high-risk disease, first line), which of the standard options do you recommend and why?Guideline options include: EMA-CO (etoposide, methotrexate, actinomycin D alternating with cyclophosphamide and vincristine) until hCG normalises plus at least three consolidation cycles.
- Am I a candidate for Etoposide, Methotrexate, Dactinomycin (actinomycin D) or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Ultra-high-risk disease
- For my situation (ultra-high-risk disease), which of the standard options do you recommend and why?Guideline options include: Induction low-dose etoposide and cisplatin for one to three cycles before EMA-CO to prevent early death from haemorrhage and organ failure.
- Am I a candidate for Etoposide, Cisplatin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Brain metastases
- For my situation (brain metastases), which of the standard options do you recommend and why?Guideline options include: High-dose systemic and intrathecal methotrexate within EMA-CO, with whole-brain or stereotactic radiotherapy or craniotomy for bleeding or single lesions.
- Am I a candidate for Methotrexate, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Resistant or relapsed disease
- For my situation (resistant or relapsed disease), which of the standard options do you recommend and why?Guideline options include: 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.
- Am I a candidate for Etoposide, Cisplatin, Paclitaxel / nab-paclitaxel or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Pembrolizumab, Avelumab?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “EMA-CO has never been tested against any other regimen in a randomised trial”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Late diagnosis of choriocarcinoma after term pregnancy still costs lives”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- High-risk gestational trophoblastic neoplasia (FIGO score 7 or more, including ultra-high-risk): the full pageHigh-risk gestational trophoblastic neoplasia is the aggressive form of this pregnancy-related cancer, usually choriocarcinoma that has spread to the lungs, liver or brain and produces very high hCG. It is treated with the multi-drug EMA-CO regimen, started gently in the sickest women to avoid early deaths, and most are cured; resistant disease gets platinum regimens, immunotherapy or surgery.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.