A study of the link between womb cancer and Lynch syndrome (PETALS)

Cancer type:

Bowel (colorectal) cancer
Womb (uterine or endometrial) cancer

Status:

Results

Phase:

Other

This study looked at how many women with womb cancer have Lynch syndrome. This is a condition that can run in families. If you have Lynch syndrome, you have a higher risk of developing some cancers. 

The study was open for people to join between 2015 and 2017. The team first published results in 2019.

More about this trial

There are several factors that can increase someone’s risk of developing womb cancer. These include:

  • getting older 
  • being overweight
  • not having children
  • inherited genetic changes

Lynch syndrome is when people have inherited certain genetic changes from their parents. 

People who have Lynch syndrome have an increased chance of developing some cancers. This includes womb cancer, ovarian cancer and bowel cancer. You may hear Lynch syndrome being called hereditary non polyposis colon cancer, or HNPCC.

Researchers wanted to find out how many women with womb cancer had Lynch syndrome. And how those women felt about being tested for it.

The main aims of this study were to find out:

  • how many women with womb cancer have Lynch syndrome and how best to identify them
  • whether women with womb cancer want to be tested for Lynch syndrome
  • whether it is cost effective for the NHS to test women with womb cancer for Lynch syndrome

Summary of results

The research team found that it is important to offer testing for Lynch syndrome to all women who have womb cancer.

Study design
This study was for women in the Manchester area who had been diagnosed with womb cancer. 

They completed a questionnaire about their health, lifestyle and family history. And the research team looked at tissue and blood samples for genetic changes.

Anyone who was found to have Lynch syndrome was given advice and support. They were also offered regular screening for bowel cancer.

Results
A total of 500 women took part in this study. Tests showed that 16 of them (3%) had Lynch syndrome. 

The researchers concluded that it was cost effective to offer all women with womb cancer a test for Lynch syndrome. They recommended that all women with womb cancer should be routinely offered testing.

Following this research, in 2020, NICE recommended that all women diagnosed with womb cancer should be offered a test for Lynch syndrome. If they do have Lynch syndrome, their relatives can be tested as well.

More detailed information
There is more information about this research in the references below. 

Please note, these articles may not be in plain English. They have been written for health care professionals and researchers.

The proportion of endometrial tumours associated with Lynch syndrome (PETALS): A prospective cross-sectional study
N Ryan, and others
PLOS Medicine, 2020. Volume 17, Issue 9, Article e1003263.

Feasibility of Gynaecologist Led Lynch Syndrome Testing in Women with Endometrial Cancer
N Ryan and others
Journal of Clinical Medicine, 2020.Volume 9, Issue 6, article 1842.

Cost-Effectiveness of the Manchester Approach to Identifying Lynch Syndrome in Women with Endometrial Cancer
T Snowsill and others
Journal of Clinical Medicine, 2020. Volume 9, Issue 6, article 1664.

A Micro-Costing Study of Screening for Lynch Syndrome-Associated Pathogenic Variants in an Unselected Endometrial Cancer Population: Cheap as NGS Chips?
N Ryan and others
Frontiers in Oncology, 2019. Article 00061.

Testing strategies for Lynch syndrome in people with endometrial cancer
NICE Diagnostic Guidance, DG42. Published October 2020.

Where this information comes from    
We have based this summary on the information in the published articles above, which have been reviewed by independent specialists (peer reviewed) Open a glossary item. We have not analysed the data ourselves. As far as we are aware, the links we list above are active and the articles are free and available to view.

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Professor Emma Crosbie

Supported by

Manchester University NHS Foundation Trust
Medical Research Council (MRC)
National Institute for Health Research (NIHR) Manchester Biomedical Research Centre
NIHR Clinical Research Network: Cancer
University of Manchester

Freephone 0808 800 4040

Last review date

CRUK internal database number:

13595

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Charlie took part in a trial to try new treatments

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“I think it’s really important that people keep signing up to these type of trials to push research forward.”

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