The emerging epidemic of endometrial cancer: time to take action

Womb Cancer Alliance

Endometrial cancer is the fifth most common cancer in women, affecting 318,000 women per year globally. Incidence is higher than for ovarian cancer and is increased in developed nations, reflecting differences in lifestyle risk factors. In the UK, endometrial cancer is the fourth most common cancer in women, but there is little public awareness about the disease, and there is no endometrial cancer charity in the UK. There is also very little research effort on international level: a simple PubMed search using the term ‘endometrial cancer’ revealed 28,218 references, compared with 85,926 for ‘ovarian cancer’ and 289,989 for ‘breast cancer’.

The incidence of endometrial cancer is rising, and more women are now dying from the disease, despite improvements in overall survival. Most of the increase in incidence is due to low‐grade Type 1 cancers. These are largely caused by excess oestrogen, unopposed by progesterone, and the main risk factor is obesity. Body mass index (BMI) is the main driver for the increasing incidence in endometrial cancer globally. However, survival from the more aggressive Type 2 cancers is decreasing. There is therefore an urgent need for research into the aetiology, screening, prevention, and treatment of this disease.

Overall survival rates for endometrial cancer are good. In England, 77.7% of women are expected to survive their disease for five years or more. However, survival stage‐for‐stage is similar to ovarian cancer; five‐year survival is around 85% for stage I tumours, compared with 25% for women diagnosed with stage IV disease. The overall relatively favourable survival may be one explanation for the lack of research and funding in this area. Another reason may be that it is commonly a disease of older women, who attract less media attention and may be less likely to discuss gynaecological problems, similar to the silence surrounding breast cancer 30 years ago. Whatever the reason, women are dying due to this relative lack of attention and research.

A recent Cochrane Review looks at the role of robotic surgery in gynaecological surgery, comparing it with traditional open or laparoscopic surgery. For hysterectomy there was no advantage with robotic surgery, which is significantly more expensive than laparoscopic surgery. None of the studies included women with endometrial cancer, and the mean/median BMI in the included studies ranged between 24 kg/m² and 32 kg/m². Despite the lack of evidence for benefit, 23% of all hysterectomies in the United States are now performed by robotic surgery. Many of these are for endometrial cancer and for women with very high BMI. The Cochrane Review highlights how such treatment decisions for endometrial cancer lack evidence to support change and may be driven by industry or physicians with conflicts of interest recommending new technologies to patients without honest discussion of the evidence. The review authors also draw attention to the risk of surgeons becoming under‐skilled in the more technically demanding conventional laparoscopic approach. Good‐quality clinical trials that address the needs of patients and caregivers (and inform clinical practice guidelines) are urgently needed for this common cancer.

The Cochrane Gynaecological Cancer Group (www.cochrane‐gyncan.org) recognises the importance of involving patients and cancer charities in prioritising review topics and has welcomed the opportunity to be involved with a new project to promote research in endometrial cancer. The Womb Cancer Alliance, which first met in October 2014, is a priority‐setting partnership including patients, clinicians, and charity representatives with an interest in endometrial cancer, under the guidance of the James Lind Alliance (www.lindalliance.org). The James Lind Alliance believes stakeholders “should work together to agree which, among those uncertainties, matter most and thus deserve priority attention”. Following proven methodology, research questions will be gathered via an open, online survey, then collated, sorted, and checked to remove duplicates and to ensure that they are genuinely unanswered. A shortlist will be posted online, and stakeholders will be asked to rank research questions in order of importance. The ‘top 10’ will be established during a final priority‐setting workshop in December 2015. Workshop participants will include members of the Womb Cancer Alliance and any survey respondents who wish to be involved. Patients, their families, and caregivers will be particularly welcome.

The goal of the Womb Cancer Alliance is to encourage researchers and funders to prioritise endometrial cancer research and to define its research agenda. We will use the findings to prioritise new Cochrane Reviews on topics important to those most affected by the disease, and we hope that research funders will open an endometrial cancer‐specific funding round. We also aim to raise the public profile of an oft‐neglected women's cancer, which is increasingly important as the ‘obesity epidemic’ takes hold on the developed world. To get involved, please visit the Womb Cancer Alliance website updated (www.cancer.manchester.ac.uk/wombcanceralliance).

Feedback on this editorial and proposals for future editorials are welcome.

End Notes

Declarations of interest

The authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available upon request). EC and JM are members of the Womb Cancer Alliance. EC is an NIHR Clinician Scientist at the University of Manchester and is also an executive scientific editor for BJOG.

Provenance and peer review

This editorial was commissioned and was not externally peer reviewed.