Appointment sheet
Vaginal squamous cell carcinoma (HPV-associated)
Prepared with OnCo (onco.cc/prep/vaginal-squamous-cell-carcinoma/). 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 HPV DNA and p16 immunohistochemistry, FIGO stage, Prior cervical neoplasia or hysterectomy, PD-L1 combined positive score, Brachytherapy dose delivered), 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 (VAIN)
- 5.For my situation (precursor (vain)), which of the standard options do you recommend and why?
- 6.Am I a candidate for Fluorouracil (5-FU), Nonavalent HPV vaccine, and what side effects should I expect?
- 7.How do the results of Evaluate the Efficacy, Immunogenicity and Safety of 9-valent HPV Recombinant Vaccine in Chinese Healthy Females and Immunogenicity and Safety of Quadrivalent HPV Vaccine in Healthy Chinese Female Subjects Aged 9 to 19 Years apply to someone like me?
Stage I, upper vagina
- 8.For my situation (stage i, upper vagina), which of the standard options do you recommend and why?
Stage II to IVA
- 9.For my situation (stage ii to iva), which of the standard options do you recommend and why?
- 10.Am I a candidate for Cisplatin, and what side effects should I expect?
Recurrent or metastatic disease
- 11.For my situation (recurrent or metastatic disease), which of the standard options do you recommend and why?
- 12.Am I a candidate for Carboplatin, Paclitaxel / nab-paclitaxel, Pembrolizumab, and what side effects should I expect?
- 13.How do the results of KEYNOTE-826 apply to someone like me?
Any stage
- 14.Are there clinical trials I could join, for example of Pembrolizumab, HPV & HBV vaccination, Phase II Study of Dysplasix™ Intravaginal Suppositories in Patients Patients With High-Risk HPV and Mild Cervical Cytologic Abnormalities?
- 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 been conducted in vaginal cancer”. How does that affect my plan?
- 18.I read that “Radiotherapy causes vaginal stenosis and sexual morbidity that are poorly addressed”. How does that affect my plan?
The words I may hear
- Cervical precancer (CIN, HSIL/LSIL): Abnormal cervical cells caused by HPV that can turn into cancer over 10-20 years.
- 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.
- 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: HPV DNA and p16 immunohistochemistry, FIGO stage (clinical, MRI, PET-CT), Prior cervical neoplasia or hysterectomy, PD-L1 combined positive score (pembrolizumab, extrapolated), Brachytherapy dose delivered (local control).
Scans and tests linked to this cancer: Colposcopy and excisional treatment (LEEP/LLETZ, cone), HPV DNA testing and self-sampling.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Stage I, upper vagina: Radical upper vaginectomy with pelvic lymphadenectomy, or brachytherapy with or without external beam radiotherapy. (Brachytherapy, Lymphadenectomy (lymph node dissection))
- Stage II to IVA: External beam radiotherapy to the pelvis (and groins for lower-third tumours) with concurrent weekly cisplatin, followed by brachytherapy, extrapolating from cervical cancer. (IMRT / IGRT (modern external beam), Brachytherapy, Cisplatin, Chemoradiation (chemoradiotherapy, CRT))
- Precursor (VAIN): Laser ablation or excision; topical imiquimod or fluorouracil; brachytherapy for extensive vault disease; HPV vaccination and screening for prevention. (Colposcopy and excisional treatment (LEEP/LLETZ, cone), Thermal ablation and cryotherapy for cervical precancer, Fluorouracil (5-FU), Brachytherapy, HPV & HBV vaccination, Nonavalent HPV vaccine, Evaluate the Efficacy, Immunogenicity and Safety of 9-valent HPV Recombinant Vaccine in Chinese Healthy Females, Immunogenicity and Safety of Quadrivalent HPV Vaccine in Healthy Chinese Female Subjects Aged 9 to 19 Years)
- Recurrent or metastatic disease: Carboplatin and paclitaxel with or without bevacizumab; pembrolizumab for PD-L1-positive tumours (KEYNOTE-826 extrapolated); pelvic exenteration for isolated central recurrence after radiotherapy. (Carboplatin, Paclitaxel / nab-paclitaxel, Pembrolizumab, KEYNOTE-826)
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