Appointment sheet
POLE-ultramutated endometrial cancer
Prepared with OnCo (onco.cc/prep/endometrial-pole-ultramutated/). 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
17 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 POLE exonuclease domain sequencing, Tumour mutational burden above 100 mutations per megabase, p53 and MMR immunohistochemistry, Tumour-infiltrating lymphocytes, Stage and lymphovascular space invasion), 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 classification
- 5.For my situation (diagnosis and classification), which of the standard options do you recommend and why?
- 6.How do the results of FIRES & SENTOR (sentinel node mapping) apply to someone like me?
Stage I to II after surgery
- 7.For my situation (stage i to ii after surgery), which of the standard options do you recommend and why?
Stage III after surgery
- 8.For my situation (stage iii after surgery), which of the standard options do you recommend and why?
- 9.Am I a candidate for Carboplatin, Paclitaxel / nab-paclitaxel, and what side effects should I expect?
- 10.How do the results of PORTEC-3 and RAINBO apply to someone like me?
Advanced or recurrent (rare)
- 11.For my situation (advanced or recurrent (rare)), which of the standard options do you recommend and why?
- 12.Am I a candidate for Pembrolizumab, Dostarlimab, and what side effects should I expect?
Any stage
- 13.Are there clinical trials I could join, for example of Molecular-class-directed adjuvant therapy in endometrial cancer, Endometrial cancer molecular classes (POLEmut, MMRd, p53abn, NSMP), MRD / molecular residual disease testing?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “Deciding which non-hotspot POLE variants are pathogenic”. How does that affect my plan?
- 17.I read that “Whether stage III and IV disease can also be de-escalated”. How does that affect my plan?
The words I may hear
- POLE ultramutation (POLEmut): A pathogenic mutation in the proofreading part of the POLE gene gives an endometrial tumour hundreds of mutations per megabase and, paradoxically, one of the best outlooks of any womb cancer, so finding it can spare a woman chemotherapy or radiotherapy.
- 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'.
- Hysterectomy: Removing the uterus (womb), often with the cervix, tubes and ovaries.
- Next-generation sequencing (NGS): Reading millions of DNA fragments in parallel, the engine behind every modern genomic test.
Tests and results to bring
Diagnosis and classification: Hysterectomy with bilateral salpingo-oophorectomy and sentinel node mapping; molecular classification of every endometrial cancer with POLE sequencing, MMR and p53 immunohistochemistry.
Biomarker results to ask for: POLE exonuclease domain sequencing (first step of the ProMisE classifier), Tumour mutational burden above 100 mutations per megabase, p53 and MMR immunohistochemistry (interpreted after POLE), Tumour-infiltrating lymphocytes, Stage and lymphovascular space invasion.
Scans and tests linked to this cancer: Histopathology & immunohistochemistry, 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
- Stage I to II after surgery: Observation without adjuvant treatment is acceptable under the ESGO/ESTRO/ESP guideline; vaginal brachytherapy where local protocol still requires it. (Brachytherapy, Endometrial cancer molecular classes (POLEmut, MMRd, p53abn, NSMP), Molecular-class-directed adjuvant therapy in endometrial cancer)
- Stage III after surgery: Pelvic radiotherapy without chemotherapy, as in RAINBO POLEmut-BLUE; chemoradiation with chemotherapy remains an option outside trials. (IMRT / IGRT (modern external beam), PORTEC-3, Carboplatin, Paclitaxel / nab-paclitaxel, RAINBO)
- Advanced or recurrent (rare): Checkpoint inhibitor with or without chemotherapy by extrapolation from the mismatch-repair-deficient class. (Pembrolizumab, Dostarlimab, Immune checkpoint inhibitors)
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