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Below, week by week, is what OnCo's record of Vaginal adenocarcinoma (including DES-associated clear cell adenocarcinoma) says about the first two months: the order is typical, the timing is yours to ask about. Vaginal adenocarcinoma is a rare glandular form of vaginal cancer, best known through the clear cell type that struck young women whose mothers took the hormone DES in pregnancy. Unlike the common squamous form it is not caused by HPV, it is treated with surgery where possible because it often affects young women, and radiotherapy and platinum chemotherapy are used when it is advanced. 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.
Biopsy with immunohistochemistry to exclude metastasis; MRI and PET-CT staging; DES exposure history.
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.
Radical vaginectomy or radical hysterectomy with lymphadenectomy, with vaginal reconstruction and ovarian preservation where appropriate; adjuvant radiotherapy for close margins or positive nodes.
External beam radiotherapy with brachytherapy, with concurrent cisplatin by extrapolation from cervical cancer.
Platinum-based chemotherapy (carboplatin and paclitaxel); checkpoint inhibitors for mismatch-repair-deficient or PD-L1-positive tumours; pelvic exenteration for isolated central recurrence.
Lifelong annual gynaecological examination with cytology of the cervix and vagina and colposcopy of adenosis.
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.
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.