I've Tested Positive, Now What?
Surgery to lower , ovarian and primary peritoneal cancer risk
This section covers the following topics:
- Types of surgery
- Expert guidelines
- Hysterectomy during risk-reducing removal of ovaries and tubes
- Surgical risks
Types of surgery
- Salpingo-oophorectomy is surgery to remove the and ovaries to treat or prevent disease. "Risk-reducing salpingo-oophorectomy" () refers to the removal of the healthy ovaries and to reduce a person's risk of developing cancer. Research on in high risk women has shown that:
- It is an effective way to lower the risk for ovarian and cancer. There is a remaining risk for primary peritoneal cancer even after the ovaries and tubes have been removed.
- it can lower the risk for death in high risk women.
- It may also lower the risk for breast cancer in certain high risk women.
- It does not completely eliminate the risk for cancer. After , there is still a risk for primary peritoneal cancer. The risk for primary peritoneal cancer is very small and varies by gene mutation.
- involves removal of the only. Emerging research suggests that the may be the source of many hereditary ovarian cancers. This has led researchers to study if premenopausal women could remove their and delay ovarian removal until after menopause. Studies looking at to lower risk are currently enrolling high-risk women. Until these studies are completed, experts cannot say for certain that lowers the ovarian cancer risk in high risk women.
- Open surgery (also known as a laparotomy) involves one incision in the lower abdomen to remove the ovaries, , and (for women undergoing hysterectomy) uterus.
- Laparoscopic surgery involves a small incision made in the abdomen to insert a flexible scope with a camera, which is used to see the ovaries and tubes. Addition small incisions are made to insert surgical instruments needed to perform the salpingo-oophorectomy. In general, people who have surgery by laparoscopy may heal quicker and spend a shorter time in the hospital than people who have open surgery. Most can be performed by laparascopic surgery.
Surgery can have risks and side effects. It's important for people to speak with experts in order to learn as much as possible about their ovarian cancer risk and to make an informed decision about the best option for lowering their risk.
Expert guidelines on for high-risk women
The National Comprehensive Cancer Network (NCCN), is an organization of cancer experts that creates guidelines on cancer care and updates them yearly. NCCN's guidelines recommend in women who have completed their childbearing with an inherited mutation in the following genes (see the link for each gene for full risk-management recommendations)
The NCCN guidelines include "consider " for women who have completed their childbearing and who have an inherited mutations in the following genes:
For women with mutations in other genes, the decision of may be based on personal and family history of cancer.
Hysterectomy during risk-reducing salpingo-oophorectomy
Hysterectomy can be performed at the same time as . Women with mutations in the following genes are at increased risk for both ovarian and endometrial cancer.
Women who have increased risk for ovarian cancer and average risk for endometrial cancer may still choose to remove their uterus at the same time that they undergo risk-reducing removal of their ovaries and . This includes women with inherited mutations in the following genes:
Factors that may affect the decision to remove or spare the uterus at the time of risk-reducing salpingo-oophorectomy include:
- Uterine cancer risk:
Although the overall risk is not increased, some studies have shown that women with an inherited mutation may be at an increased risk of a very rare type of uterine cancer called “uterine serous papillary carcinoma.” Women who have taken tamoxifen have increased risk for uterine cancer.
- Previous uterine or cervical abnormality:
Hysterectomy is often considered if a woman has had any previous abnormal pap smears or any abnormality of the uterus.
- Considerations about hormone replacement
Women who plan to take hormone replacement after may consider hysterectomy in order to simplify hormone replacement. There is an increased risk for uterine cancer in women who take estrogen alone compared to estrogen with progesterone. Women who have hysterectomy can take estrogen without progesterone. Estrogen alone may have fewer side effects than estrogen with progesterone. See our section on Surgical Menopause for more information.
- Intra-operative risk of hysterectomy:
Removing the uterus involves more surgery than alone. Therefore, there is a slight increase in operative complications and in the risk that a laparoscopic procedure will have to turn into an abdominal surgery with a full incision.
- Insurance coverage:
Because of the surgery, recovery and hospitalization are lengthier; some insurance companies won’t pay for hysterectomy unless there is medical necessity.
- Possible long term effects of hysterectomy:
Hysterectomy may increase the risk for some of the long term health issues which may be associated .
Every surgery has potential risks; some are more serious than others. Some risks can affect recovery or long term health
- Delayed healing
- Blood loss
- Blood clots
- Pain (post-operative and long term pain syndromes)
- Surgical menopause and related health issues (see our section on Side Effects of Menopause for more information)
- Injury to internal organs
- Bladder incontinence
- Sexual side effects
It is important for people to discuss possible surgical risks with a surgeon to understand the seriousness and likelihood of these risks before making the decision to have risk-reducing surgery.
Average recovery time after is about 1-2 weeks.
If you are a person who is at high risk for ovarian cancer, you can find peer support through the following resources:
- Register for the FORCE Message Boards to connect with others who share your situation.
- FORCE's Peer Navigation Program will match you with a volunteer who shares your mutation and situation and provide you with a free resource guide.
- Contact the FORCE impact leaders in your area to link to local support groups and other resources.
- Attend a virtual support meeting in your area.
- Read the stories from members of our community.
Other organizations that provide support for people at high risk for ovarian cancer include:
- SHARE is a nonprofit that provides support and information for women with or at high risk for breast, ovarian or endometrial cancer.
- The National Ovarian Cancer Coalition is a national nonprofit support organization focused on ovarian cancer.
- The Ovarian Cancer Research Alliance is a national nonprofit organization with information and support resources focused on ovarian cancer.
- Sharsheret is a national organization for the Jewish breast and ovarian cancer community.
The following prevention studies are open to women at high risk for and ovarian cancer.
- NCT03382574: Pilot Study of Denosumab in or Mutation Carriers Scheduling Risk-Reducing Salpingo-Oophorectomy. The purpose of this study is to evaluate the effects of denosumab (an approved medication for ) on ovarian cancer risk markers in premenopausal women with a or mutation, who are scheduled to undergo risk-reducing surgery to remove their ovaries and .
NCT04251052: A Study to Compare Two Surgical Procedures in Women with Mutations to Assess Reduced Risk of Ovarian Cancer (SOROCk). Women with a mutation ages 35 – 50 at risk for ovarian cancer are eligible. SOROCk will determine if removal of alone can reduce the risk of ovarian cancer nearly as much as removing the ovaries and .