Appointment sheet
Endometrial cancer
Prepared with OnCo (onco.cc/prep/endometrial/). 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
34 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 MMR/MSI, POLE, p53, HER2, ER/PR), 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?
Early
- 5.For my situation (early), which of the standard options do you recommend and why?
Advanced/recurrent
- 6.For my situation (advanced/recurrent), which of the standard options do you recommend and why?
- 7.Am I a candidate for Dostarlimab, Pembrolizumab, Trastuzumab deruxtecan, and what side effects should I expect?
Prevention and hereditary risk
- 8.For my situation (prevention and hereditary risk), which of the standard options do you recommend and why?
- 9.Am I a candidate for Progestins (megestrol acetate, medroxyprogesterone, levonorgestrel IUD), and what side effects should I expect?
Diagnosis and staging
- 10.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Early stage surgery
- 11.For my situation (early stage surgery), which of the standard options do you recommend and why?
- 12.How do the results of FIRES & SENTOR (sentinel node mapping) apply to someone like me?
Fertility-sparing (grade 1, stage IA, no invasion)
- 13.For my situation (fertility-sparing (grade 1, stage ia, no invasion)), which of the standard options do you recommend and why?
- 14.Am I a candidate for Progestins (megestrol acetate, medroxyprogesterone, levonorgestrel IUD), and what side effects should I expect?
Adjuvant, low and intermediate risk
- 15.For my situation (adjuvant, low and intermediate risk), which of the standard options do you recommend and why?
Adjuvant, high risk (stage III, serous, p53abn, deep invasion grade 3)
- 16.For my situation (adjuvant, high risk (stage iii, serous, p53abn, deep invasion grade 3)), which of the standard options do you recommend and why?
- 17.Am I a candidate for Carboplatin, Paclitaxel / nab-paclitaxel, Pembrolizumab or related drugs, and what side effects should I expect?
- 18.How do the results of PORTEC-3 apply to someone like me?
Advanced or recurrent, first line (any MMR status)
- 19.For my situation (advanced or recurrent, first line (any mmr status)), which of the standard options do you recommend and why?
- 20.Am I a candidate for Dostarlimab, Pembrolizumab, Durvalumab, and what side effects should I expect?
- 21.How do the results of RUBY / ENGOT-EN6 / GOG-3031 and NRG-GY018 / KEYNOTE-868 apply to someone like me?
Recurrent, pMMR, after platinum
- 22.For my situation (recurrent, pmmr, after platinum), which of the standard options do you recommend and why?
- 23.Am I a candidate for Lenvatinib, Pembrolizumab, Trastuzumab deruxtecan or related drugs, and what side effects should I expect?
- 24.How do the results of KEYNOTE-775 / Study 309 and DESTINY-PanTumor02 apply to someone like me?
Recurrent, dMMR, after chemotherapy
- 25.For my situation (recurrent, dmmr, after chemotherapy), which of the standard options do you recommend and why?
- 26.Am I a candidate for Dostarlimab, Pembrolizumab, and what side effects should I expect?
HER2-positive serous
- 27.For my situation (her2-positive serous), which of the standard options do you recommend and why?
- 28.Am I a candidate for Trastuzumab, Trastuzumab deruxtecan, and what side effects should I expect?
- 29.How do the results of DESTINY-PanTumor02 apply to someone like me?
Any stage
- 30.Are there clinical trials I could join, for example of Sacituzumab tirumotecan, Puxitatug samrotecan, Saruparib, HS-20089?
- 31.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 32.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 33.I read that “p53-abnormal disease behaves like serous ovarian”. How does that affect my plan?
- 34.I read that “Obesity-driven incidence rising”. How does that affect my plan?
The words I may hear
- Endometrial cancer molecular classes (POLEmut, MMRd, p53abn, NSMP): Four groups defined by a few tests that predict outcome better than the microscope: POLE-mutated (excellent), mismatch-repair deficient, p53-abnormal (worst), and 'no specific profile'.
- Glycaemic index and glycaemic load: How fast a food raises blood sugar (index) and how much, given the portion (load).
- Microsatellite-stable (MSS) / mismatch-repair proficient (pMMR): The 'normal' result on the mismatch-repair test: the tumour has intact DNA spell-checking and few mutations.
- Lynch syndrome: Lynch syndrome is the most common inherited cancer syndrome: a faulty mismatch-repair gene raises lifetime bowel cancer risk to 40-80% and also endometrial and other cancers.
- Hysterectomy: Removing the uterus (womb), often with the cervix, tubes and ovaries.
- Metabolic syndrome and insulin resistance: Metabolic syndrome is a cluster of central obesity, high blood pressure, high blood sugar and abnormal blood fats.
- TP53-mutated (p53-abnormal): Loss of the p53 'guardian of the genome', the most commonly mutated gene in cancer.
- Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR): Microsatellite instability is the mark of a broken DNA spell-checker (loss of MLH1, MSH2, MSH6 or PMS2) that leaves thousands of mutations, so the tumour displays abnormal proteins that T cells can recognise.
- Tumour-agnostic (tissue-agnostic) approval: A tumour-agnostic approval lets a drug be used for any cancer carrying a specific molecular feature, regardless of where it started.
- Obesity-related cancers (IARC list of 13): Excess body fat is an established cause of thirteen cancers on the IARC list, including womb, oesophagus, kidney, liver, bowel, pancreas and postmenopausal breast cancer.
Tests and results to bring
Diagnosis and staging: Endometrial biopsy for postmenopausal bleeding; MRI for myometrial and cervical invasion; molecular classification (p53, MMR IHC, POLE sequencing) on the diagnostic specimen.
Biomarker results to ask for: MMR/MSI, POLE, p53, HER2 (serous), ER/PR, TROP2, MMR IHC / MSI (dMMR ~25-30%; Lynch syndrome in ~3% of all cases), POLE exonuclease-domain mutation, p53 IHC, HER2 IHC/ISH (serous, p53abn), L1CAM (NSMP risk), CTNNB1 (NSMP low-grade recurrence risk), PD-L1 (limited utility), FRα and TROP2 (ADC trials), ARID1A, PIK3CA, PTEN (targetable in trials).
Scans and tests linked to this cancer: Companion diagnostics, Germline (hereditary) testing, Histopathology & immunohistochemistry, MRI, MSI and mismatch-repair testing, MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Prevention and hereditary risk: Universal MMR testing of tumours to identify Lynch syndrome; risk-reducing hysterectomy and salpingo-oophorectomy for Lynch carriers after childbearing; levonorgestrel IUD and weight management reduce risk; no screening for average-risk women. (Germline (hereditary) testing, Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR), Progestins (megestrol acetate, medroxyprogesterone, levonorgestrel IUD))
- Early: Hysterectomy; adjuvant therapy by molecular class.
- Early stage surgery: Minimally invasive total hysterectomy and bilateral salpingo-oophorectomy with sentinel lymph node mapping (FIRES, SENTOR); omentectomy for serous histology. (Robotic & minimally invasive surgery, Sentinel lymph node biopsy, FIRES & SENTOR (sentinel node mapping))
- Adjuvant, low and intermediate risk: Observation (low risk, POLEmut) or vaginal brachytherapy (intermediate risk; PORTEC-2); molecular class may de-escalate (PORTEC-4a). (Brachytherapy, Endometrial cancer molecular classes (POLEmut, MMRd, p53abn, NSMP))
- Adjuvant, high risk (stage III, serous, p53abn, deep invasion grade 3): Chemoradiation plus carboplatin-paclitaxel (PORTEC-3) or chemotherapy alone (GOG-258); pembrolizumab or dostarlimab added for stage III-IV per RUBY/GY018 eligibility. (PORTEC-3, Carboplatin, Paclitaxel / nab-paclitaxel, IMRT / IGRT (modern external beam), Pembrolizumab, Dostarlimab)
- Advanced/recurrent: Chemotherapy + dostarlimab or pembrolizumab; lenvatinib-pembrolizumab; T-DXd if HER2+. (Dostarlimab, Pembrolizumab, Trastuzumab deruxtecan)
- Fertility-sparing (grade 1, stage IA, no invasion): Progestin (oral or IUD) with re-biopsy every 3-6 months; hysterectomy after childbearing. (Fertility-sparing hormonal treatment of early endometrial cancer, Progestins (megestrol acetate, medroxyprogesterone, levonorgestrel IUD))
- Advanced or recurrent, first line (any MMR status): Carboplatin-paclitaxel plus dostarlimab (RUBY), pembrolizumab (NRG-GY018/KEYNOTE-868), or durvalumab (DUO-E; dMMR in the US), continued as maintenance up to 2-3 years. (RUBY / ENGOT-EN6 / GOG-3031, NRG-GY018 / KEYNOTE-868, DUO-E / GOG-3041 / ENGOT-EN10, Dostarlimab, Pembrolizumab, Durvalumab, Chemotherapy + PD-1/PD-L1 blockade, first-line advanced endometrial cancer)
- Recurrent, dMMR, after chemotherapy: Single-agent PD-1 blockade (dostarlimab GARNET, pembrolizumab) if immunotherapy-naive; otherwise chemotherapy or trials. (Dostarlimab, Pembrolizumab, Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR))
- HER2-positive serous: Trastuzumab with carboplatin-paclitaxel (randomised phase 2) or T-DXd for IHC 3+ after prior therapy. (Trastuzumab, Trastuzumab deruxtecan, HER2, DESTINY-PanTumor02)
- Recurrent, pMMR, after platinum: Lenvatinib + pembrolizumab (KEYNOTE-775) if not previously given immunotherapy; T-DXd if HER2 IHC 3+; chemotherapy (doxorubicin, weekly paclitaxel); hormonal therapy for low-grade ER-positive disease. (Lenvatinib, Pembrolizumab, KEYNOTE-775 / Study 309, Trastuzumab deruxtecan, DESTINY-PanTumor02, Letrozole (and other aromatase inhibitors), Progestins (megestrol acetate, medroxyprogesterone, levonorgestrel IUD))
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