The Accidental Activist Podcast
Thursday, October 10, 2019

Today a major step has been taken to ensure women considering morcellation as a treatment for fibroids are made aware of the likelihood of unexpected uterine sarcoma and the risk involved in morcellation.

All healthcare professionals considering morcellation for their patients now have advice from the Royal College of Obstetricians and Gynaecologists (RCOG) about obtaining consent.

Morcellation is when tissue such as the uterus or fibroids are cut into smaller pieces to be removed more easily. There are several advantages to morcellation but it is important that women are aware of some risks that increase depending on the patient's age, menopausal status, ethnicity and family history.

Sometimes the uterine tissue or fibroid can unexpectedly contain a uterine cancer. If undetected, the morcellation process could cause the cancer to spread and worsen the chances of survival.

The risk of unexpected uterine sarcoma in fibroids is significantly greater for women over 50 especially if they have red flag symptoms such as being post-menopausal, going through menopause or experiencing post-menopausal bleeding. Ethnicity, a family history of certain cancers, the use of certain drugs can all influence the likelihood of uterine sarcoma.

As well as the guidance around obtaining consent, the RCOG has developed information for patients explaining what morcellation is, the risks associated with the procedure and the treatment options available. It is hoped that women can make an informed choice along with their healthcare team whether morcellation is right for them.

The long-awaited consent advice and information are the result of many years of consultation to which Sarcoma UK has contributed. Sarcoma UK were part of the RCOG Morcellation Task and Finish Group alongside representatives from the British Sarcoma Group, the Royal College of Radiologists, the Royal College of Pathologists, the British Society for Gynaecological Endoscopy and the Royal College of Obstetricians and Gynaecologists.

The information was reviewed before publication by members of the RCOG Women’s Network and the RCOG Women’s Voices Involvement Panel, and by women and their families across the UK with close experience of this procedure.

Antoinette Barbee is one of the women who was instrumental in campaigning for better information about the risk of morcellation. 'I really am delighted to hear that the RCOG have introduced guidelines, proper informed consent and unbiased information for women with presumed fibroids who are considering or having surgery that could involve morcellation. Although it's too late for my mum, who is very sorely missed, I do believe these guidelines will help other women with uterine sarcomas get earlier diagnosis and proper surgical removal leading to improved prognosis. This is all I have wanted.'

[Listen below to The Accidental Activist, an interview with Antoinette about her experience in raising awareness of the need for informed consent around morcellation.  Transcript and links to subscribe to I am more than this: A Sarcoma UK podcast.]

Claire Kelleher, Director of Information and Support at Sarcoma UK, welcomes the new consent advice and patient information. ‘Since 2014 when we produced our report, Gynaecological sarcomas: the hidden cancer, Sarcoma UK has actively sought to highlight the issue of fibroids and uterine sarcoma. This guidance and information from the Royal College of Obstetricians and Gynaecologists brings much-needed clarity for practitioners and patients and, if implemented, will undoubtedly save lives. We will continue to monitor the incidence rate of uterine sarcoma over the coming years'.