Sources — uterine adenosarcoma patient-voice layer¶
Last curated: 2026-10-24.
(a) Organisation pages fetched¶
| Source | URL | Accessed | What was used |
|---|---|---|---|
| Foundation for Women’s Cancer homepage | https://foundationforwomenscancer.org/ | 2026-10-10 | Site live; education/research/public-awareness remit |
| Sarcoma UK homepage | https://sarcoma.org.uk/ | 2026-10-10 | Site live; support line present |
| Sarcoma Foundation of America homepage | https://curesarcoma.org/ | 2026-10-24 | Homepage 200: education, support/resources and patient-story links. Subtype and 2026-statistics pages returned 403; their contents and changing numerical claims remain unverified |
| Sarcoma Alliance homepage | https://sarcomaalliance.org/ | 2026-10-10 | Site live; assistance with cost of expert second opinions |
| NCI PDQ uterine sarcoma, health-professional version | https://www.cancer.gov/types/uterine/hp/uterine-sarcoma-treatment-pdq | 2026-10-10 | Adenosarcoma named; FIGO adenosarcoma staging table; tamoxifen as uterine-sarcoma-class risk factor (summary dated 2024-12-17) |
| Former NCI patient PDQ URL | https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq → https://www.cancer.gov/types/uterine/sarcoma/treatment | 2026-10-10 | Redirects to a general treatment hub that does not contain “adenosarcoma” on this fetch |
| American Cancer Society uterine-sarcoma detection/diagnosis/staging hub | https://www.cancer.org/cancer/types/uterine-sarcoma/detection-diagnosis-staging.html | 2026-10-10 | General information hub still live |
(b) News / features¶
None fetched as stand-alone features. Sarcoma UK’s National Sarcoma Survey 2025 and “Unique Among Cancers” report were seen as homepage cards; the full reports were not retrieved this session and are not cited for numbers.
(c) Video¶
Not used. No adenosarcoma-specific video listing was retrieved and watched.
(d) Published qualitative and patient-experience research (PMIDs live this session)¶
- den Hollander D, et al. 'I thought I had fibroids, and now I don't': a mixed method study on health-related quality of life in uterine sarcoma patients. Health Qual Life Outcomes. 2022;20:65. PMID 35443673. n=13 patients + 23 professionals; mixed uterine-sarcoma histologies; NCT04071704.
- Ziegler E, et al. Fertility-sparing strategy in a rare case of uterine adenosarcoma and consecutive spontaneous pregnancy and livebirth. Arch Gynecol Obstet. 2026. PMID 42334466. Single case with a short patient-perspective narrative; not a qualitative study.
- Supporting clinical papers used only to ground themes T1, T4, T5 (not as qualitative sources): Clement 1990 PMID 2156771; Tate 2018 PMID 29441675; Carroll 2014 PMID 25449308; Raine-Bennett 2016 PMID 26646120; L'Heveder 2019 PMID 31584132; Yuan 2019 PMID 31139558; Piątek 2022 PMID 36012998; Nathenson 2016 PMID 27718181; Friedlander 2014 PMID 25341585; Li 2022 PMID 35005157; Nasioudis 2017 PMID 28541635; Ray-Coquard 2024 PMID 39322612; Karabajakian 2023 PMID 37202293.
Coverage limits¶
- No adenosarcoma-specific qualitative study. Themes inherit uterine-sarcoma-class findings from n=13 mixed histologies. A 2026 n=1 perspective exists but cannot establish a theme. LMS, ESS and adenosarcoma are not the same illness; sexual-function and menopausal themes may apply more to hysterectomy/BSO as an operation than to adenosarcoma as a histology.
- Closed groups not accessed. Gynae Sarcoma email forum and Facebook ESS/sarcoma groups are signposted only.
- Organisation story hubs were treated as evidence that stories are collected, not as a source of individual narratives.
- Sarcoma UK survey/report numbers were not taken from homepage cards.
- NCCN patient materials were not fetched.
- Non-English patient organisations (beyond FWC’s advertised Arabic/Spanish educational resources) were not systematically searched; this layer is English-language biased.