Preventive hysterectomy and quality of life: new research highlights the need for tailored support
- 22 hours ago
- 5 min read
New UK research released today has provided important evidence about quality of life following preventive hysterectomy for women with Lynch syndrome.
The study found that younger women who had undergone risk-reducing surgery due to their inherited cancer risk reported a small but meaningful reduction in quality of life compared with similar women who had not had surgery. No difference was found among women who were post-menopausal.
Women who had undergone surgery also reported less worry about developing cancer.
The findings reinforce the importance of personalised conversations about preventive surgery, including its cancer-prevention benefits, its possible effects on quality of life and the support women may need before and after their operation.
A complex and personal decision
Women with Lynch syndrome have an increased risk of several cancers, including womb cancer, also known as endometrial cancer, and ovarian cancer.
A risk-reducing hysterectomy, which removes the womb before cancer develops, can substantially reduce this risk. The operation may be carried out alongside the removal of both fallopian tubes and ovaries to reduce ovarian cancer risk.
For many women, however, deciding whether and when to have surgery is not straightforward. The decision may be influenced by their individual cancer risks, age, fertility wishes, family circumstances, previous experience of cancer and feelings about living with an increased cancer risk.
When the ovaries are removed before natural menopause, the operation also causes an immediate surgical menopause. The physical and emotional effects of this can continue well beyond the initial recovery from surgery.
Until now, there has been limited evidence directly measuring the effect of this type of preventive surgery on quality of life for women with Lynch syndrome.
What did the PRESCORES study examine?
The PRESCORES study was led by researchers at Queen Mary University of London and delivered through 25 NHS trusts across England, Scotland and Wales.
It is the largest study of its kind and the first to directly compare quality of life among women with Lynch syndrome who had and had not undergone risk-reducing hysterectomy.
A total of 1,120 women with confirmed Lynch syndrome took part:
529 had undergone a risk-reducing hysterectomy
591 had not had the surgery.
Participants completed the EQ-5D questionnaire, an internationally recognised measure of health-related quality of life recommended by the National Institute for Health and Care Excellence.
Lynch Syndrome UK supported awareness and recruitment for the study. Patient representatives also reviewed the questionnaire and other participant materials, and LSUK was represented on the study management group and among the paper’s co-authors.
What did the researchers find?
Across all participants, quality-of-life scores were slightly lower among women who had undergone surgery, although the overall difference was small and could have been due to chance.
A clearer difference was seen when researchers considered age and menopausal status.
Women under 51 who had undergone risk-reducing hysterectomy reported lower quality of life than pre-menopausal women who had not had the operation. The difference was considered clinically meaningful by the researchers.
Among older, post-menopausal women, there was no meaningful difference in quality of life between those who had and had not undergone surgery.
The study also found that women who had undergone risk-reducing surgery reported significantly less cancer worry. Overall quality of life among all the women with Lynch syndrome who took part was similar to that of women in the general population.
Professor Ranjit Manchanda, Chief Investigator of the study, Queen Mary University of London, said:
“The decision to have risk-reducing surgery is complex, and is guided by a woman's perceived cancer risk, her fertility wishes, long-term health considerations and other personal factors. Women must weigh the clear benefits of cancer prevention against any potential impact on their quality of life. We found that women under 51 with Lynch syndrome who had a preventive hysterectomy reported lower quality of life than similar women who hadn't, but there was no difference in older women. Our findings will help women with Lynch syndrome make personalised, and at times difficult, decisions around cancer prevention. Pre-menopausal women having preventive hysterectomy need better, tailored multidisciplinary support.”
Understanding the role of surgical menopause
It is important not to interpret the results as showing that removal of the womb alone caused the reduction in quality of life.
Of the 529 women in the surgery group, 500 had also had both ovaries and fallopian tubes removed. Only 29 had undergone hysterectomy without ovary removal.
This means the study could not reliably separate the impact of hysterectomy from the effects of surgical menopause. The researchers suggest that menopausal symptoms following the removal of the ovaries could be one explanation for the quality-of-life difference seen in younger women, but the study cannot prove this.
The research also used a general quality-of-life questionnaire rather than one designed specifically to examine menopause, sexual health or urinary symptoms. Further research will therefore be needed to understand which aspects of women’s health are most affected and what forms of support could make the greatest difference.
What do these findings mean for women with Lynch syndrome?
The findings do not mean that younger women should avoid preventive surgery. Risk-reducing surgery remains an important and potentially life-saving option for preventing womb and ovarian cancers.
Instead, the results show why women need balanced, personalised information when making this decision.
Conversations with healthcare professionals should cover not only the reduction in cancer risk, but also:
the possible timing of surgery
whether the ovaries will be removed
fertility and family-planning wishes
the potential effects of surgical menopause
hormone replacement therapy, where appropriate
emotional, sexual and physical wellbeing
the care and follow-up available after surgery.
Support should not end once the operation has been completed. Women need access to coordinated care that recognises the longer-term effects surgery may have on their health and quality of life.
Tracy Smith, Trustee at Lynch Syndrome UK and a co-investigator on the study, said:
“The PRESCORES findings give women with Lynch syndrome clearer, evidence-based insight at a crucial moment in their decision-making. It’s reassuring to see no impact on quality of life for post-menopausal women, and important that younger women receive tailored, multidisciplinary support when considering preventive hysterectomy. This research strengthens personalised counselling and ensures women are empowered with the information they deserve.”
Making the decision that is right for you
There is no single decision or timetable that will be right for every person with Lynch syndrome.
Anyone considering preventive surgery should discuss their individual cancer risks, options and concerns with their genetics, gynaecology or wider medical team. It may be helpful to ask what support will be available both before surgery and during recovery, including specialist menopause care where needed.
Further information is available from:
Source:
Oxley S, et al. ‘Health-related quality of life after risk-reducing hysterectomy: a cross-sectional study.’ eClinicalMedicine.
DOI: 10.1016/j.eclinm.2026.104083
