Appointment sheet
HPV-independent vulvar squamous cell carcinoma (p53-mutant)
Prepared with OnCo (onco.cc/prep/hpv-independent-vulvar-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
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 p53 immunohistochemistry, p16 immunohistochemistry, TP53 sequencing where immunohistochemistry is equivocal, NOTCH1 and HRAS mutations, Margin status and presence of differentiated VIN or lichen sclerosus at the margin), 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?
Precursor (differentiated VIN) and lichen sclerosus
- 5.For my situation (precursor (differentiated vin) and lichen sclerosus), which of the standard options do you recommend and why?
Early stage
- 6.For my situation (early stage), which of the standard options do you recommend and why?
Locally advanced disease
- 7.For my situation (locally advanced disease), which of the standard options do you recommend and why?
- 8.Am I a candidate for Cisplatin, and what side effects should I expect?
Recurrent or metastatic disease
- 9.For my situation (recurrent or metastatic disease), which of the standard options do you recommend and why?
- 10.Am I a candidate for Carboplatin, Paclitaxel / nab-paclitaxel, Bevacizumab or related drugs, and what side effects should I expect?
- 11.How do the results of Pembrolizumab Combination With Lenvatinib in Pts With Recurrent,Persistent,Metastatic or Locally Advanced Vulvar Cancer Not Amenable to Curative Surge and AK104 for Recurrent or Metastatic Vulvar Cancer apply to someone like me?
Follow-up
- 12.For my situation (follow-up), which of the standard options do you recommend and why?
Any stage
- 13.Are there clinical trials I could join, for example of Pembrolizumab, Cemiplimab, Pembrolizumab Combination With Lenvatinib in Pts With Recurrent,Persistent,Metastatic or Locally Advanced Vulvar Cancer Not Amenable to Curative Surge, AK104 for Recurrent or Metastatic Vulvar Cancer?
- 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 “Differentiated VIN is hard to recognise and is often diagnosed only next to an invasive cancer”. How does that affect my plan?
- 17.I read that “Whether wider margins or adjuvant radiotherapy prevent the frequent local recurrences has not been tested prospectively”. How does that affect my plan?
The words I may hear
- Combined positive score (CPS): A PD-L1 score that counts stained tumour cells and immune cells together.
- 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.
- 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: p53 immunohistochemistry (mutant patterns: overexpression, null, cytoplasmic), p16 immunohistochemistry (negative), TP53 sequencing where immunohistochemistry is equivocal, NOTCH1 and HRAS mutations (p53 wild-type HPV-independent group), Margin status and presence of differentiated VIN or lichen sclerosus at the margin, PD-L1 combined positive score.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Early stage: 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. (Sentinel lymph node biopsy, Lymphadenectomy (lymph node dissection), IMRT / IGRT (modern external beam))
- Locally advanced disease: Cisplatin chemoradiotherapy with surgery for residual disease; responses are less complete than in p16-positive tumours. (Cisplatin, IMRT / IGRT (modern external beam), Chemoradiation (chemoradiotherapy, CRT))
- Precursor (differentiated VIN) and lichen sclerosus: Excision of differentiated VIN; long-term potent topical corticosteroids for lichen sclerosus; low threshold for biopsy of new lesions. (Thermal ablation and cryotherapy for cervical precancer)
- Recurrent or metastatic disease: Carboplatin and paclitaxel with or without bevacizumab; pembrolizumab for PD-L1-positive tumours; trials of pembrolizumab with lenvatinib and of cadonilimab. (Carboplatin, Paclitaxel / nab-paclitaxel, Bevacizumab, Pembrolizumab, Pembrolizumab Combination With Lenvatinib in Pts With Recurrent,Persistent,Metastatic or Locally Advanced Vulvar Cancer Not Amenable to Curative Surge, AK104 for Recurrent or Metastatic Vulvar Cancer)
- Follow-up: Lifelong surveillance of the vulvar skin because new tumours arise in the lichen sclerosus field years later. (HPV-positive (p16) head and neck cancer)
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