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Patient voice — uterine adenosarcoma

This directory is the patient-experience layer: what living with this rare tumour is like, as reported through patient organisations, published qualitative research, and public information pages. Published clinical series document some initial polyp/fibroid labels, but do not estimate their frequency; the patient-experience evidence therefore treats diagnostic misidentification as a documented theme, not as a population-rate claim.

Coverage limit, stated first. There is no adenosarcoma-specific qualitative study. PubMed searches rerun on 2026-09-01 combining adenosarcoma with qualitative / lived experience / patient experience / patient-reported outcome / quality-of-life terms did not return a histology-specific qualitative study. The mixed-methods HRQoL paper (den Hollander 2022, PMID 35443673) interviewed 13 patients with mixed uterine-sarcoma histologies. One 2026 fertility-sparing case report includes a short narrative from a single adenosarcoma patient (Ziegler 2026, PMID 42334466); it is an n=1 perspective, not a qualitative cohort. Themes are therefore uterine-sarcoma-class unless labelled otherwise.

The wiki synthesis lives at ../../wiki/patient-experience-and-advocacy.md.

Files

File Contents
organizations.md Directory of organisations that cover uterine sarcoma or sarcoma. Every main-table entry was fetched this session. No adenosarcoma-only organisation was found.
themes.md Thematic synthesis. Each theme ≥2 independent sources.
sources.md Annotated source list plus an honest coverage-limits note.

Methodology (build 2026-08-31; independent re-search 2026-09-01)

  1. Published research (PubMed). Searches: adenosarcoma × qualitative / lived experience / patient experience / patient reported; uterine sarcoma × qualitative / HRQoL / EORTC. Load-bearing hit: den Hollander 2022, PMID 35443673 (13 patients, 23 professionals, NCT04071704). Clinical series that document the diagnostic trap (Clement 1990, PMID 2156771; Tate 2018, PMID 29441675) are cited as clinical, not as qualitative, evidence of the same phenomenon.
  2. Organisations. Started from Foundation for Women’s Cancer (SGO foundation), Sarcoma UK, Sarcoma Foundation of America, Sarcoma Alliance, NCI PDQ, American Cancer Society. Each main-table site was fetched. Closed groups (Gynae Sarcoma email forum, ESS Facebook group) were noted from Sarcoma UK’s public signposting and not entered.
  3. Patient stories. Organisation story hubs were noted in aggregate. Private individuals are not named.

Ethics rules applied (CONVENTIONS.md §3)

  1. Public sources only. Closed forums were not accessed.
  2. Paraphrase; quotes ≤15 words, attributed. The den Hollander title is a published paper title and is used as such.
  3. No names or identifying details of private individuals.
  4. No cross-source dossiers.
  5. Aggregate reporting; themes require ≥2 independent sources.

How to update

  • Re-fetch any new organisation before adding it; record access date.
  • New qualitative papers enter sources.md with a live PMID and themes.md only if they add or strengthen a theme.
  • If an adenosarcoma-specific qualitative study appears, it should replace the mixed-sarcoma default in themes.md rather than being averaged with it.