Journal des soins de santé des femmes
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‘Endometrial Cancer: Access Denied’ - A Review of the Forgotten Voice of Intellectual and Physical Disability in Gynaecology Oncology in Australia

Jennifer Weishaupt

Introduction: The voice of an intellectually and physically disabled woman is often forgotten when discussing, investigating and managing endometrial cancer in women with disabilities. This case report explores the need to start strategies for collaborative application of resources to optimize a woman’s experience who is living with disabilities and endometrial cancer.

Case Description: A 41-year old premenopausal woman with a severe intellectual disability and physically debilitating osteogenesis imperfecta presented with a 2-year history of abnormal uterine bleeding (AUB) and unsuccessful hormonal treatment. After two failed hysteroscopies due to her severe bony-pelvic abnormality, limiting access vaginally; the decision for a hysterectomy was made without a histological diagnosis. An Australian Guardianship Tribunal granted permission for both diagnostic and treatment of her AUB and suspicion of endometrial cancer. The ESMO-ESGO-ESTRO-2014 Consensus current recommendations and levels of evidence in management of endometrial cancer are evaluated in context of the case.

Method: Mandatory workup and pathological assessment for diagnosis of endometrial cancer could not be carried out and imaging including: CT scan, transabdominal ultrasound and MRI were relied upon to primarily assess her suspected disease.

An abdominal hysterectomy, bilateral salpingectomy and ovarian conservation were performed. The histopathology post-operatively confirmed stage 1A grade 1 endometrioid adenocarcinoma. The time from initial Gynaecology Oncology referral to final histopathology was 9 months.

Discussion: This is the first report to explore the limitations and challenges of the literature and application of various current diagnostic modalities, surgical approach and outcomes of endometrial cancer in an intellectually and physically disabled woman in Australia.