Appointment sheet
Urethral cancer
Prepared with OnCo (onco.cc/prep/urethral/). 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
14 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 Histology and site, Clinical and MRI stage, nodal status, HPV / p16 in squamous tumours, PD-L1 and FGFR3 in urothelial histology, Urine cytology and urethroscopy findings), 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?
Distal, localised
- 5.For my situation (distal, localised), which of the standard options do you recommend and why?
Proximal or locally advanced
- 6.For my situation (proximal or locally advanced), which of the standard options do you recommend and why?
- 7.Am I a candidate for Cisplatin, Gemcitabine + cisplatin, Fluorouracil (5-FU) or related drugs, and what side effects should I expect?
Metastatic
- 8.For my situation (metastatic), which of the standard options do you recommend and why?
- 9.Am I a candidate for Enfortumab vedotin, Pembrolizumab, Gemcitabine + cisplatin, and what side effects should I expect?
Any stage
- 10.Are there clinical trials I could join, for example of Enfortumab vedotin, Pembrolizumab?
- 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 13.I read that “No prospective trials; international registries and inclusion in urothelial and HPV-squamous basket trials are the response”. How does that affect my plan?
- 14.I read that “Late diagnosis mimicking benign stricture; urethroscopy for unexplained stricture or bleeding is the practical fix”. How does that affect my plan?
The words I may hear
- FGFR3 alterations (bladder cancer): FGFR3 is a growth-receptor gene mutated or fused in about a fifth of advanced bladder cancers and most low-grade early ones.
- HPV-positive (p16) head and neck cancer: Throat cancers caused by the human papillomavirus, identified by a p16 stain.
- Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.
Tests and results to bring
Biomarker results to ask for: Histology and site (drives treatment analogy), Clinical and MRI stage, nodal status, HPV / p16 in squamous tumours, PD-L1 and FGFR3 in urothelial histology (extrapolated from bladder cancer), Urine cytology and urethroscopy findings.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Distal, localised: Organ-sparing surgery (distal urethrectomy, partial penectomy) or radiotherapy including brachytherapy. (Brachytherapy)
- Proximal or locally advanced: Neoadjuvant platinum-based chemotherapy (or chemoradiation for squamous histology) followed by surgery; definitive chemoradiation as organ-preserving alternative. (Cisplatin, Gemcitabine + cisplatin, Fluorouracil (5-FU), Mitomycin C, IMRT / IGRT (modern external beam))
- Metastatic: Treat by histology: urothelial-type regimens (enfortumab vedotin plus pembrolizumab, gemcitabine-cisplatin) or squamous regimens; clinical trials. (Enfortumab vedotin, Pembrolizumab, Gemcitabine + cisplatin)
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