Appointment sheet
Mismatch-repair-deficient endometrial cancer
Prepared with OnCo (onco.cc/prep/endometrial-mmr-deficient/). 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 MMR immunohistochemistry, Microsatellite instability by PCR or sequencing, MLH1 promoter methylation, Germline mismatch-repair gene testing, Tumour mutational burden), 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 hereditary risk
- 5.For my situation (diagnosis and hereditary risk), which of the standard options do you recommend and why?
Early stage after surgery
- 6.For my situation (early stage after surgery), which of the standard options do you recommend and why?
- 7.How do the results of PORTEC-3 apply to someone like me?
Advanced or recurrent, first line
- 8.For my situation (advanced or recurrent, first line), which of the standard options do you recommend and why?
- 9.Am I a candidate for Dostarlimab, Pembrolizumab, Durvalumab or related drugs, and what side effects should I expect?
- 10.How do the results of RUBY / ENGOT-EN6 / GOG-3031 and NRG-GY018 / KEYNOTE-868 apply to someone like me?
Recurrent after chemotherapy without prior immunotherapy
- 11.For my situation (recurrent after chemotherapy without prior immunotherapy), which of the standard options do you recommend and why?
- 12.Am I a candidate for Dostarlimab, Pembrolizumab, and what side effects should I expect?
Lynch carriers
- 13.For my situation (lynch carriers), which of the standard options do you recommend and why?
Any stage
- 14.Are there clinical trials I could join, for example of Study of Pembrolizumab (MK-3475) Versus Chemotherapy in Mismatch Repair Deficient (dMMR) Advanced or Recurrent Endometrial Carcinoma (MK-3475-C93/KEYNOTE-C93/GOG-3064/ENGOT-en15), Study of Pembrolizumab (MK-3475) in Combination With Adjuvant Chemotherapy With or Without Radiotherapy in Participants With Newly Diagnosed Endometrial Cancer After Surgery With Curative Intent (MK-3475-B21 / KEYNOTE-B21 / ENGOT-en11 / GOG-3053), A frameshift neoantigen vaccine for Lynch syndrome carriers as the first preventive cancer vaccine approval, WRN inhibitors: a second synthetic-lethal win for mismatch-repair cancers?
- 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 “Whether chemotherapy can be dropped in favour of immunotherapy alone”. How does that affect my plan?
- 18.I read that “Why a third of deficient tumours do not respond to checkpoint blockade”. 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'.
- 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.
- 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.
Tests and results to bring
Diagnosis and hereditary risk: Universal MMR immunohistochemistry on every endometrial cancer; MLH1 methylation testing on MLH1-deficient tumours; germline testing and cascade testing of relatives when methylation is absent.
Biomarker results to ask for: MMR immunohistochemistry (MLH1, PMS2, MSH2, MSH6), Microsatellite instability by PCR or sequencing, MLH1 promoter methylation (separates sporadic from Lynch), Germline mismatch-repair gene testing, Tumour mutational burden, PD-L1 (not required for treatment).
Scans and tests linked to this cancer: Germline (hereditary) testing, Histopathology & immunohistochemistry.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Early stage after surgery: Adjuvant therapy by stage and risk factors as for no specific molecular profile: vaginal brachytherapy for intermediate risk, pelvic radiotherapy for high-intermediate risk; chemotherapy adds little (PORTEC-3). (Brachytherapy, IMRT / IGRT (modern external beam), PORTEC-3)
- Advanced or recurrent, first line: Carboplatin-paclitaxel with dostarlimab (RUBY) or pembrolizumab (NRG-GY018), continued as maintenance; durvalumab (DUO-E) is an alternative. (Dostarlimab, Pembrolizumab, Durvalumab, Carboplatin, Paclitaxel / nab-paclitaxel, RUBY / ENGOT-EN6 / GOG-3031, NRG-GY018 / KEYNOTE-868, DUO-E / GOG-3041 / ENGOT-EN10, Chemotherapy + PD-1/PD-L1 blockade, first-line advanced endometrial cancer)
- Recurrent after chemotherapy without prior immunotherapy: Single-agent dostarlimab or pembrolizumab, with durable responses in a large minority. (Dostarlimab, Pembrolizumab, Immune checkpoint inhibitors, Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR))
- Lynch carriers: Annual surveillance from the mid-thirties where offered, aspirin, and risk-reducing hysterectomy with salpingo-oophorectomy after childbearing. (Lynch syndrome, Germline (hereditary) testing, Hysterectomy)
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