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Study: Women support delayed removal of ovaries

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Contents

At a glance In-depth
Strengths and limitations Clinical trials           
What does this mean for me? Questions for your doctor 
Questions for your doctor Resources


STUDY AT A GLANCE
This study is about:

Understanding how women feel about surgery to lower the risk for ovarian cancer.

Why is this study important?

For women at high risk of ovarian cancer, surgery to remove the ovaries and (risk-reducing salpingo-oophorectomy or ) is the most effective way to prevent ovarian cancer. However, can have multiple side effects related to surgical menopause.

There is growing evidence that many ovarian cancers start in the . Because of this evidence and the side effects of , several large clinical trials are looking at a two-step risk-reducing approach: 

  • early (removal of the ).
  • delayed (removal of the ovaries) in a separate surgery later. 

The two-step approach is known as “risk-reducing early followed by delayed (RRESDO).  This study is the largest to date looking at patients’ attitudes and experiences with risk-reducing surgery. 

Study findings: 

This study was done in the United Kingdom between October 2017 and June 2019. A total of 683 women at high risk of ovarian cancer filled out a 39-item questionnaire. Participants filled out different parts of the questionnaire depending on whether or not they had undergone .

It is important to note that patients in this study did not undergo RRESDO.  Differences in side effects between and RRESDO were not measured. Patients were asked about their opinion of RRESDO and if they had previously undergone , how they felt about that procedure.

Premenopausal women who did not previously have preventative surgery

  • Among premenopausal women at high risk for ovarian cancer who had not yet had preventative surgery:
  • About 55% (145 of 262) thought RRESDO was acceptable.
  • About 70% (181 of 262) thought participating in a study looking at RRESDO was acceptable.

Many factors affected acceptability of RRESDO among high-risk women. Those more likely to find RRESDO acceptable compared to were most concerned about:

  • sexual dysfunction
  • delaying hot flashes/night sweats

Those less likely to find RRESDO acceptable compared to were more concerned about:

  • having two surgeries.
  • not knowing how much RRESDO reduces ovarian cancer risk compared to .
  • interval monitoring between surgeries.
  • developing an interval ovarian cancer between surgeries.

Premenopausal women who had

  • Among premenopausal women who had RRSO:
    • 88% (143/161) were satisfied with having undergone .
    • 9% (15/160) regretted undergoing .
    • 11% (18/160) felt that it did them a lot of harm.
  • Among women who had undergone premenopausal , 38% (61/159) said they would have considered RRESDO instead.
  • Hormone replacement therapy () use among premenopausal women who did not have breast cancer and had was high (74%).
    • use did not affect their satisfaction/regret with
    • use did reduce vaginal dryness.

Postmenopausal women who had

  • Among postmenopausal women who had RRSO:
    • 95% (80/84) were satisfied.
    • 1% (1/81) regretted undergoing .
      • This woman noted that experiencing night sweats, sleep disturbances, sexual dysfunction or urinary incontinence contributed to her regret.
    • 5% (4/80) felt it did them a lot of harm.

This study shows that the idea of RRESDO is acceptable among high-risk women, particularly those who are concerned about sexual dysfunction. This study also shows higher acceptance than an earlier study that found about 35 percent acceptance of RRESDO.  This earlier research was published by FORCE and researchers from MD Anderson Cancer Center (Holman et al., 2014). Greater acceptability of RRESDO may be due to the increased awareness among high-risk women that most ovarian cancer begins in the .
 

Strengths and limitations:

Strengths

This is the largest study to date reporting on RRESDO acceptability and menopausal satisfaction or regret following . A strength of this study is that all participants were counseled in detail about preventive surgery for ovarian cancer.

Limitations

Limitations include that most participants in this study were white, had at least a university degree and a relatively high household income, and may not be representative of all patients. These results may differ for minority women or women who are less educated or affluent. Participants in this study did not undergo RRESDO, and differences in outcome were not measured.
 

What does this mean for me?

Most women considering are concerned that it will change their quality of life. RRESDO may be an alternative with less long-term impact on quality of life. Two studies measuring quality of life after these two different surgical approaches (Women Choosing Surgical Prevention or WISP and Early (Tubectomy) With Delayed in BRCA1/2 Gene Mutation Carriers or TUBA) will be published in the near future. However, it is a two-stage surgical procedure, and having two operations may also impact quality of life.

While is available as a means of birth control (like tubal ligation), it is not standard of care for risk reduction in high-risk women. This is because it is unclear if or how much RRESDO lowers ovarian cancer risk or whether it decreases survival compared to . Ideally, women considering this surgery should consider enrolling in a clinical trial, where they will be followed closely.

Share your thoughts on this XRAYS article by taking our brief survey.
 

Reference:

Gaba F, Blyuss O, Chandrasekaran D, Osman M, Goyal S, Gan C, Izatt L, Tripathi V, Esteban I, McNicol L, Ragupathy K, Crawford R, Evans DG, Legood R, Menon U and Manchanda R.  Attitudes towards risk-reducing early with delayed for ovarian cancer prevention: a cohort study. British Journal of Obstetrics and Gynecology. 2020 Aug 16. doi: 10.1111/1471-0528.16424.

Holman LL, Friedman S, Daniels MS, Sun CC, Lu KH. Acceptability of prophylactic with delayed as risk-reducing surgery among mutation carriers. Gynecologic Oncology. 2014 May;133(2):283-6. doi: 10.1016/j.ygyno.2014.02.030.

 

Disclosure

FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board before publication to assure scientific integrity.

 

This article is relevant for:

Women at high risk of ovarian cancer who are considering undergoing risk-reducing surgery.

This article is also relevant for:

Women under 45

People with a genetic mutation linked to cancer risk

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IN-DEPTH REVIEW OF RESEARCH

Study background:

For very high-risk women, risk-reducing salpingo-oophorectomy () is the most effective method to reduce ovarian cancer risk. In women with an inherited or other high-risk ovarian cancer mutation, significantly reduces ovarian cancer risk. However, has disadvantages.  In premenopausal women, it results in surgical menopause and infertility. Premature surgical menopause has known side effects, including increased risk of heart disease, , decline and sexual dysfunction. These side effects may be worse for women who are unable or chose not to use hormone replacement therapy. However, nonhormonal interventions may be available to mitigate some of these side effects

With increasing evidence that most ovarian cancer begins in the , a number of clinical trials are currently evaluating risk-reducing early (removal of the ) followed by delayed (removal of the ovaries)—RRESDO—in high-risk women. This two-stage alternative offers some level of risk reduction (the extent is currently unknown) and avoids the consequences of premature menopause.

This study provides data from multiple centers in the United Kingdom on women at increased risk of ovarian cancer and the acceptability of RRESDO, the complications following and satisfaction/regret following .


Researchers of this study wanted to know:

How acceptable risk-reducing followed by delayed is among high-risk women. The researchers also looked at surgical menopause satisfaction and regret.
 

Populations looked at in this study:

Between October 2017 and June 2019 to total of 773 women at high risk for ovarian cancer were recruited from six clinics in the United Kingdom. Ninety people were excluded because they did not meet eligibility criteria.


Study design:

A total of 683 women completed a 39-item questionnaire.  They were asked about social and economic demographics, surgical procedures, menstrual data, family health information and consequences of premature menopause that influenced their decisions to undergo, delay or decline . Participants filled out different parts of the questionnaire depending on whether they had undergone .


Study findings:  

Between October 2017 and June 2019, 773 people completed the questionnaire. 

Of the remaining 683 participants:

  • 49% (337/683) had not undergone .

  • 51% (346/683) had undergone .

Among premenopausal women at high risk for ovarian cancer who did not previously have preventative surgery:

  • 55% (145 of 262) found RRESDO acceptable.
  • 20% (53/262) did not find RRESO acceptable.
  • 24% (64/262) were unsure if RRESDO was acceptable.

When premenopausal women who had not undergone were asked if they would participate in a research study offering RRESDO:

  • 70% (181/262) said they would consider taking part in a study that offered RRESDO.
  • 31% (81/262) said they probably would not participate in an RRESDO study.
    • Premenopausal women concerned with sexual dysfunction were more likely to find RRESDO acceptable.

When premenopausal women who already had were asked whether they would have considered RRESDO instead:

  • 38% (61/159) would have considered RRESDO.
  • 62% (98/1590) would not have considered RRESDO.
    • Premenopausal women who experienced sexual dysfunction following were more likely to find RRESDO acceptable.

Among women who had undergone premenopausal RRSO:

  • 89% (143/161) were satisfied with their decision.
  • 9% (15/160) of premenopausal and 1% (1/81) of postmenopausal women regretted their decision.
    • These women experienced night sweats, sleep disturbances, sexual dysfunction and urinary incontinence, which led to them to regret their decision to undergo .
  • Hormone replacement therapy () use among premenopausal women who did not have breast cancer and had was high (74%).
    • use did not affect their satisfaction/regret with
    • use did reduce vaginal dryness.

When women who had undergone premenopausal were asked whether they would have considered undergoing RRESDO instead of had it been offered:

  • 38% (61/159) said ‘probably/maybe’.
  • 62% (98/159) said ‘probably not/definitely’
    • These women were more likely to have experienced hot flashes, or fatigue compared to women who ‘probably/maybe’ would have considered RRESDO.

 

Strengths and limitations:

Strengths

This is the largest study to date reporting on RRESDO acceptability and menopausal satisfaction or regret following . A strength of this study is that all participants were counseled in detail about preventive surgery for ovarian cancer.

Limitations

Limitations include that most participants in this study were white, had at least a university degree and a relatively high household income, and may not be representative of all patients. These results may differ for minority women or women who are less educated or affluent. Participants in this study did not undergo RRESDO, and differences in outcome were not measured.
 

Context: 

has been shown to lower risk of ovarian cancer-related, breast cancer-related and overall mortality in high-risk women.

In this study, concerns about sexual dysfunction were identified as significant factors associated with both acceptance of RRESDO and regret after . The findings of this study are not surprising given concerns high-risk women have about sexual dysfunction. New data from a study supports the validity of these concerns due to the significant decline in sexual function experienced by women who had undergone .

These findings should help direct additional research for high-risk women. While RRESDO and advances in reproductive technology and benefit patients, they have resulted in an increasingly complex set of options for high-risk women.


Conclusions:

Most women find RRESDO acceptable, particularly if they are concerned about sexual dysfunction. However, it is important to note that the effect of RRESDO on ovarian cancer risk-reduction is unknown.

Although most women are satisfied with , regret is higher for premenopausal women than for postmenopausal women. Some research has shown that these women experience a decrease in sexual functioning. These symptoms are improved by , but not to pre-surgical levels. In this study, following did not increase satisfaction but did decrease vaginal dryness.

Share your thoughts on this XRAYS article by taking our brief survey.

Expert Guidelines Expert Guidelines

The National Comprehensive Cancer Network (NCCN) provides guidelines for management of gynecologic cancer risk in people with and mutations. 

Prevention 

  • Risk-reducing removal of ovaries and , (known as salpingo-oophorectomy) is recommended between ages 35-40 for and 40-45 for and upon completion of childbearing.
    • Research studies show that removing the ovaries can increase survival for women with  mutations. 
    • Women should talk with their doctors about the effects of early menopause and options for managing them.
  • Women should talk with their doctors about the risks and benefits of keeping or removing their uterus (hysterectomy), including:
    • Women with a  mutation have an increased risk for a rare form of aggressive uterine cancer; hysterectomy removes this risk. 
    • For women considering hormone replacement after surgery, the presence or absence of a uterus can affect the choice of hormones used.
      • Estrogen-only hormone replacement is less likely to increase the risk for breast cancer, although it increases the risk for uterine cancer. Women who still have their uterus are typically given hormone replacement with both estrogen and progesterone.
      • Adding progesterone to estrogen hormone replacement can protect against uterine cancer. However, the combination of these hormones may increase the risk for breast cancer more than estrogen alone. 
    • A medical history of fibroids or other uterine or cervical issues may justify a hysterectomy. 
  • Oral contraceptives (birth control pills) have been shown to lower the risk for ovarian cancer in women with  mutations. Research on the effect of oral contraceptives on breast cancer risk has been mixed. Women should discuss the benefits and risks of oral contraceptives for lowering ovarian cancer risk with their doctors. 
  • Removal of the  only () is being studied as an option for lowering risk in high-risk women who are not ready to remove their ovaries. Studies on the effects of are ongoing. At this time whether  lowers the risk for ovarian cancer in high-risk women remains unknown. 
    • Consider enrolling in a research study looking at this procedure to lower cancer risk.

Screening

  • There are no proven benefits to routine ovarian cancer screening using transvaginal  and a  blood test. However, some doctors still recommend this screening, starting at ages 30-35.
  • Women should be aware of the symptoms of gynecologic cancer and report abnormalities to their doctors. 

Updated: 08/06/2022

Questions to Ask Questions to Ask Your Doctor

  • Is risk-reducing removal of the followed by delayed removal of the ovaries (RRESDO) an option for me?
  • What can I expect after ?
  • What can I expect after RRESDO?
  • How do the benefits of RRESDO compare to the risks?
  • How would two surgeries with RRESDO impact my quality of life compared to one surgery with ?
  • If I have RRESDO, what type of screening should I consider prior to the second surgery?
  • Do I qualify for any research studies on ovarian cancer risk reduction?
  • I am experiencing menopause effects from my . Can you refer me to a menopause expert?

Open Clinical Trials Open Clinical Trials

The following are studies looking at ovarian cancer screening or prevention.  ​​​​​

Additional clinical trials for ovarian cancer screening and prevention may be found here.

Updated: 08/06/2022

Peer Support Peer Support

FORCE offers many peer support programs for people with inherited mutations. 

Updated: 08/06/2022

Find Experts Find Experts

The following organizations offer peer support services for people with, or at high risk for ovarian cancer:

Updated: 02/05/2022

Who covered this study?

Medscape

Two-stage surgery to reduce ovarian cancer risk piques interest This article rates 4.5 out of 5 stars

Science Magazine

New surgical approach for women at risk of ovarian cancer This article rates 4.0 out of 5 stars

How we rated the media

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