Vaginal adenocarcinoma (including DES-associated clear cell adenocarcinoma)
Prepared with OnCo (onco.cc/prep/vaginal-adenocarcinoma/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
16 on the sheet- 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 Prenatal DES exposure history, Vaginal adenosis on examination and biopsy, Immunohistochemistry to separate primary from metastatic adenocarcinoma, HPV and p16 status, FIGO stage), 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?
- 5.For my situation (diagnosis), which of the standard options do you recommend and why?
- 6.For my situation (early stage), which of the standard options do you recommend and why?
- 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?
- 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, Pembrolizumab, and what side effects should I expect?
- 11.For my situation (des-exposed women), which of the standard options do you recommend and why?
- 12.Are there clinical trials I could join, for example of Pembrolizumab?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “No trial-based treatment exists; everything is extrapolated from cervical and ovarian cancer”. How does that affect my plan?
- 16.I read that “The natural history of late recurrence in clear cell tumours means decades of follow-up”. 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.
- 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
Diagnosis: Biopsy with immunohistochemistry to exclude metastasis; MRI and PET-CT staging; DES exposure history.
Biomarker results to ask for: Prenatal DES exposure history, Vaginal adenosis on examination and biopsy, Immunohistochemistry to separate primary from metastatic adenocarcinoma (PAX8, ER, CDX2, napsin A, HNF1 beta), HPV and p16 status (usually negative), FIGO stage (MRI, PET-CT), Mismatch repair and PD-L1 status (immunotherapy candidacy).
Scans and tests linked to this cancer: Colposcopy and excisional treatment (LEEP/LLETZ, cone), Histopathology & immunohistochemistry, MRI, PET/CT.
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: Radical vaginectomy or radical hysterectomy with lymphadenectomy, with vaginal reconstruction and ovarian preservation where appropriate; adjuvant radiotherapy for close margins or positive nodes. (Lymphadenectomy (lymph node dissection), Oncofertility and fertility preservation, IMRT / IGRT (modern external beam))
- Locally advanced disease: External beam radiotherapy with brachytherapy, with concurrent cisplatin by extrapolation from cervical cancer. (IMRT / IGRT (modern external beam), Brachytherapy, Cisplatin, Chemoradiation (chemoradiotherapy, CRT))
- Recurrent or metastatic disease: Platinum-based chemotherapy (carboplatin and paclitaxel); checkpoint inhibitors for mismatch-repair-deficient or PD-L1-positive tumours; pelvic exenteration for isolated central recurrence. (Carboplatin, Paclitaxel / nab-paclitaxel, Pembrolizumab)
- DES-exposed women: Lifelong annual gynaecological examination with cytology of the cervix and vagina and colposcopy of adenosis. (Colposcopy and excisional treatment (LEEP/LLETZ, cone))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.