Loading
Below, week by week, is what OnCo's record of HPV-independent vulvar squamous cell carcinoma (p53-mutant) says about the first two months: the order is typical, the timing is yours to ask about. HPV-independent vulvar cancer is the commoner type of vulvar squamous cell cancer, arising in older women from the chronic skin condition lichen sclerosus rather than from HPV, and marked by faults in the p53 gene. It recurs locally far more often than the HPV type, so treatment centres on complete surgical removal, control of the surrounding skin disease and long follow-up. Sections appear only where the record has something to say. Orientation, not medical advice.
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.
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.
Wide local excision with attention to margins, sentinel node biopsy or inguinofemoral lymphadenectomy by the GROINSS-V criteria; adjuvant radiotherapy for close margins or positive nodes.
Cisplatin chemoradiotherapy with surgery for residual disease; responses are less complete than in p16-positive tumours.
Excision of differentiated VIN; long-term potent topical corticosteroids for lichen sclerosus; low threshold for biopsy of new lesions.
Carboplatin and paclitaxel with or without bevacizumab; pembrolizumab for PD-L1-positive tumours; trials of pembrolizumab with lenvatinib and of cadonilimab.
Lifelong surveillance of the vulvar skin because new tumours arise in the lichen sclerosus field years later.
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.
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.
Every term links to the glossary.