The first 60 days: Node-positive and metastatic penile cancer
Node-positive penile cancer is squamous cell cancer of the penis that has reached the lymph nodes of the groin or pelvis, and it is where penile cancer becomes life-threatening. Treatment combines removal of the groin nodes with chemotherapy or chemoradiotherapy before or after surgery, the InPACT trial is testing the best order, and PD-1 antibodies are being added for advanced disease. Below, week by week, is what OnCo's record of Node-positive and metastatic penile cancer says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- SurgeonNamed in the standard of care for: Positive sentinel node or resectable palpable nodes, Bulky or fixed inguinal nodes.
- Medical oncologistNamed in the standard of care for: Bulky or fixed inguinal nodes, After lymphadenectomy with pelvic nodes or extranodal extension, Metastatic disease, HPV 16-positive recurrent disease.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Bulky or fixed inguinal nodes, After lymphadenectomy with pelvic nodes or extranodal extension.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
- 1.Positive sentinel node or resectable palpable nodesEAU-ASCO Collaborative Guideline on Penile Cancer 2023
Radical inguinal lymphadenectomy; pelvic lymphadenectomy when two or more inguinal nodes are involved or extranodal extension is found.
Neoadjuvant TIP chemotherapy (paclitaxel, ifosfamide, cisplatin) followed by lymphadenectomy in responders; chemoradiotherapy as an alternative within InPACT.
- 3.After lymphadenectomy with pelvic nodes or extranodal extensionEAU-ASCO Collaborative Guideline on Penile Cancer 2023
Adjuvant chemotherapy or chemoradiotherapy, ideally within InPACT because the benefit is unproven.
Platinum-based chemotherapy (TIP, paclitaxel-cisplatin, or with fluorouracil); PD-1 antibodies in trials or later lines (pembrolizumab, cemiplimab).
Trials of HPV-directed vaccines with checkpoint inhibition (TG4001 with avelumab).
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Single inguinal node metastasis without extranodal extension, Multiple or bilateral inguinal node metastases, Pelvic node metastasis or extranodal extension.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Positive sentinel node or resectable palpable nodes
- For my situation (positive sentinel node or resectable palpable nodes), which of the standard options do you recommend and why?Guideline options include: Radical inguinal lymphadenectomy; pelvic lymphadenectomy when two or more inguinal nodes are involved or extranodal extension is found.
Bulky or fixed inguinal nodes
- For my situation (bulky or fixed inguinal nodes), which of the standard options do you recommend and why?Guideline options include: Neoadjuvant TIP chemotherapy (paclitaxel, ifosfamide, cisplatin) followed by lymphadenectomy in responders; chemoradiotherapy as an alternative within InPACT.
- Am I a candidate for Paclitaxel / nab-paclitaxel, Ifosfamide, Cisplatin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
After lymphadenectomy with pelvic nodes or extranodal extension
- For my situation (after lymphadenectomy with pelvic nodes or extranodal extension), which of the standard options do you recommend and why?Guideline options include: Adjuvant chemotherapy or chemoradiotherapy, ideally within InPACT because the benefit is unproven.
- Am I a candidate for Cisplatin, Paclitaxel / nab-paclitaxel, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Metastatic disease
- For my situation (metastatic disease), which of the standard options do you recommend and why?Guideline options include: Platinum-based chemotherapy (TIP, paclitaxel-cisplatin, or with fluorouracil); PD-1 antibodies in trials or later lines (pembrolizumab, cemiplimab).
- Am I a candidate for Cisplatin, Paclitaxel / nab-paclitaxel, Fluorouracil (5-FU) or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
HPV 16-positive recurrent disease
- For my situation (hpv 16-positive recurrent disease), which of the standard options do you recommend and why?Guideline options include: Trials of HPV-directed vaccines with checkpoint inhibition (TG4001 with avelumab).
- How do the results of Phase Ib/II of TG4001 and Avelumab in HPV16 Positive R/M Cancers apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Any stage
- 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?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “No randomised trial has ever shown that chemotherapy improves survival in penile cancer”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Lymphadenectomy causes lymphoedema and wound complications in a large share of patients”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Node-positive and metastatic penile cancer: the full pageNode-positive penile cancer is squamous cell cancer of the penis that has reached the lymph nodes of the groin or pelvis, and it is where penile cancer becomes life-threatening. Treatment combines removal of the groin nodes with chemotherapy or chemoradiotherapy before or after surgery, the InPACT trial is testing the best order, and PD-1 antibodies are being added for advanced disease.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.