Appointment sheet
Node-positive and metastatic penile cancer
Prepared with OnCo (onco.cc/prep/node-positive-penile-cancer/). 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 Number, laterality and extranodal extension of inguinal nodes, Pelvic node involvement on CT or PET-CT, p16 immunohistochemistry and HPV DNA, PD-L1 expression, TP53 and CDKN2A alterations in HPV-independent tumours), 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?
Positive sentinel node or resectable palpable nodes
- 5.For my situation (positive sentinel node or resectable palpable nodes), which of the standard options do you recommend and why?
Bulky or fixed inguinal nodes
- 6.For my situation (bulky or fixed inguinal nodes), which of the standard options do you recommend and why?
- 7.Am I a candidate for Paclitaxel / nab-paclitaxel, Ifosfamide, Cisplatin, and what side effects should I expect?
After lymphadenectomy with pelvic nodes or extranodal extension
- 8.For my situation (after lymphadenectomy with pelvic nodes or extranodal extension), which of the standard options do you recommend and why?
- 9.Am I a candidate for Cisplatin, Paclitaxel / nab-paclitaxel, and what side effects should I expect?
Metastatic disease
- 10.For my situation (metastatic disease), which of the standard options do you recommend and why?
- 11.Am I a candidate for Cisplatin, Paclitaxel / nab-paclitaxel, Fluorouracil (5-FU) or related drugs, and what side effects should I expect?
HPV 16-positive recurrent disease
- 12.For my situation (hpv 16-positive recurrent disease), which of the standard options do you recommend and why?
- 13.How do the results of Phase Ib/II of TG4001 and Avelumab in HPV16 Positive R/M Cancers apply to someone like me?
Any stage
- 14.Are there clinical trials I could join, for example of Pembrolizumab, Cemiplimab, Phase Ib/II of TG4001 and Avelumab in HPV16 Positive R/M 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 “No randomised trial has ever shown that chemotherapy improves survival in penile cancer”. How does that affect my plan?
- 18.I read that “Lymphadenectomy causes lymphoedema and wound complications in a large share of patients”. How does that affect my plan?
The words I may hear
- HPV status (HPV-positive / HPV-negative): Whether a cancer is caused by human papillomavirus.
- HPV-positive (p16) head and neck cancer: Throat cancers caused by the human papillomavirus, identified by a p16 stain.
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
Tests and results to bring
Biomarker results to ask for: Number, laterality and extranodal extension of inguinal nodes, Pelvic node involvement on CT or PET-CT, p16 immunohistochemistry and HPV DNA (prognostic, trial stratification), PD-L1 expression (investigational), TP53 and CDKN2A alterations in HPV-independent tumours.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Positive sentinel node or resectable palpable nodes: Radical inguinal lymphadenectomy; pelvic lymphadenectomy when two or more inguinal nodes are involved or extranodal extension is found. (Lymphadenectomy (lymph node dissection), Sentinel lymph node biopsy, Robotic & minimally invasive surgery)
- Bulky or fixed inguinal nodes: Neoadjuvant TIP chemotherapy (paclitaxel, ifosfamide, cisplatin) followed by lymphadenectomy in responders; chemoradiotherapy as an alternative within InPACT. (Paclitaxel / nab-paclitaxel, Ifosfamide, Cisplatin, Cytotoxic chemotherapy)
- After lymphadenectomy with pelvic nodes or extranodal extension: Adjuvant chemotherapy or chemoradiotherapy, ideally within InPACT because the benefit is unproven. (Cisplatin, Paclitaxel / nab-paclitaxel, IMRT / IGRT (modern external beam))
- Metastatic disease: Platinum-based chemotherapy (TIP, paclitaxel-cisplatin, or with fluorouracil); PD-1 antibodies in trials or later lines (pembrolizumab, cemiplimab). (Cisplatin, Paclitaxel / nab-paclitaxel, Fluorouracil (5-FU), Pembrolizumab, Cemiplimab, Immune checkpoint inhibitors)
- HPV 16-positive recurrent disease: Trials of HPV-directed vaccines with checkpoint inhibition (TG4001 with avelumab). (Phase Ib/II of TG4001 and Avelumab in HPV16 Positive R/M Cancers)
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