Helping you make the decision about risk-reducing ovarian surgery

Cancer Risk

Questions in this section:

Where does ovarian cancer develop?

Femail Reproductive System

This picture shows the female reproductive system. The ovaries are connected to the uterus (womb) by the fallopian tubes. Ovarian-type cancer can develop in the ovaries, the fallopian tubes or the lining of the abdomen (called the ‘peritoneum‘). Other female cancers, such as cancer of the endometrium (the lining of the uterus/womb) or cervix, are very different and should not be confused with ovarian cancer. For more information about ovarian cancer check out the Cancer Research UK and other websites under Contacts & Resources.

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What is the ovarian cancer risk if I have a family history of ovarian cancer?

Ovarian cancer occurs by chance in less than 2 of every 100 women. For women who have a family history of ovarian, breast and/or bowel cancer and/or a faulty gene, the risk can be much higher than 2 in 100. Generally the risk is quite low in young women and rises with age.

Your risk depends on how many of your relatives had cancer and on how closely related they are to you. 'First degree relatives' are those directly related to you, for example, mother, sister or daughter. 'Second degree relatives' are those who are less closely related, for example your aunt or your grandmother. The diagrams below show how risk changes depending on the number of relatives with ovarian cancer.

Pictogram of 2 out of 100 women

Less than 2 out of 100 women in the general population get ovarian cancer in their lifetime. About 98 women will not.

Pictogram of 5 out of 100 women

About 5 out of 100 women with one first degree relative with ovarian cancer get ovarian cancer in their lifetime. About 95 women will not.

Pictogram of 7 out of 100 women

About 7 out of 100 women with two or more first and/or second degree relatives with ovarian cancer get ovarian cancer in their lifetime. About 93 women will not.

A woman’s chances of developing ovarian cancer can also be increased if she has relatives with cancers other than ovarian cancer, such as breast and bowel cancer. A woman’s risk is estimated by genetics services once the full family history is available.

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How can I find out whether I have a faulty gene?

(For those who have not been tested)

If you come from a family where certain types of cancer (e.g. ovarian, breast, bowel) have affected more than just one or two relatives, you might have a faulty gene. To get tested for a faulty gene you will need to be referred to genetics services (usually by your GP). The genetics service will assess your family history in detail and you will be told whether there might be a faulty gene involved.

Within the NHS, testing for a faulty gene in the family usually begins with a test on a blood sample from a person who has had cancer. If you have had cancer yourself, you may be offered a genetic test as the first person in your family. If you have not had cancer yourself, a relative who has had cancer will be offered a genetic test first. For the test, a blood sample will be taken and sent to a laboratory for analysis. Test results then usually come back within 2 to 3 months. For more information about what the test involves see Contacts and Resources.

Results of this test may show that you either have a faulty gene that predisposes you to cancer (in this case, the gene test is said to be 'positive') or that you do not have a faulty gene that predisposes you to cancer (in this case, the gene test is said to be 'negative'). In some cases, test results may show that you have a 'variant of unknown significance', which means the test detetcted a change in your gene, but it is not known whether this change predisposes you to cancer or whether it is harmless. If a faulty gene is found, other members of the family can then have a genetic test to see whether they also have the same faulty gene.

If there is no living relative with cancer, or the relative doesn't want to get tested, it may still be possible to do a genetic test for you on the NHS , if your genetic counsellor thinks that your chances of carrying a faulty gene are higher than 10 in 100 based on your family history. For anyone who cannot get tested on the NHS, there are some companies offering private testing. However, this can be very expensive and without a strong family history, there may be no need for testing.

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What would my risk be if a faulty gene is found?

(For those who have not been tested)

The most common faulty genes linked to ovarian cancer are called Breast Cancer (BRCA) genes 1 and 2 and genes common in Lynch Syndrome (formerly known as Hereditary Non-Polyposis Colorectal Cancer or HNPCC). The lifetime risk of developing ovarian cancer can be much higher for women who have a faulty gene compared to the general population.

Pictogram of 39 out of 100 women

About 39 out of 100 women with a BRCA1 faulty gene get ovarian cancer by the time they are 70. About 61 women with a BRCA1 faulty gene will not.

Pictogram of 16 out of 100 women

About 16 out of 100 women with a BRCA2 faulty gene get ovarian cancer by the time they are 70. About 84 women with a BRCA2 faulty gene will not.

Pictogram of 6 to 12 out of 100 women

About 6 to 12 out of 100 women with Lynch Syndrome get ovarian cancer by the time they are 70 (striped figures indicate the range of cancer risk from 6 to 12 per 100). About 88 to 94 women with Lynch Syndrome will not.

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What if I cannot get tested or my genetic test is uninformative?

For some women it might not be possible to get tested, because they have no living relative with cancer or their relative does not want to be tested. In other cases a genetic test may come back as ‘uninformative’ which means a gene variant of uncertain significance has been found, but it is not clear whether this variant increases the risk of cancer or not. In these cases the genetics service will estimate the woman’s risk based on her family history.

If you have been told that your family history suggests you might have a faulty gene and you would like more specific information, you can personalise this aid by selecting the gene that most closely resembles your family history according to your genetic counsellor. For example, if you have been told your family history suggests you might have a BRCA1 gene, personalise OvDex by answering the first question with "Yes, I have a faulty BRCA1 gene".

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Does my cancer risk change over time?

Yes. Your cancer risk increases with age.

Graph of cancer risk over lifetime

This graph shows how cancer risk rises over time. While your so-called ‘lifetime’ risk (which is the risk that you will get ovarian cancer at some point in your life) will stay the same over time, your ‘age-related’ ovarian cancer risk (which is the risk that you will get ovarian cancer in a specified time frame, for example within the next five years) increases with age.

As you stated that you are over 50 years, your ovarian cancer risk is rising.

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How can I find out whether I have a faulty gene?

Ovarian cancer occurs by chance in less than 2 of every 100 women. For women who have a family history and/or a faulty gene this can be much higher. If you come from a family where certain types of cancer (e.g. ovarian, breast, bowel) have affected more than just one or two relatives, you might have a faulty gene. To get tested for a faulty gene you will need to be referred to genetics services (usually by your GP). The genetics service will assess your family history in detail and you will be told whether there might be a faulty gene involved.

Within the NHS, testing for a faulty gene in the family usually begins with a test on a blood sample from a person who has had cancer. If you have had cancer yourself, you may be offered a genetic test as the first person in your family. If you have not had cancer yourself, a relative who has had cancer will be offered a genetic test first. For the test, a blood sample will be taken and sent to a laboratory for analysis. Test results then usually come back within 2 to 3 months. For more information about what the test involves see Contacts and Resources.

Results of this test may show that you either have a faulty gene that predisposes you to cancer (in this case, the gene test is said to be 'positive') or that you do not have a faulty gene that predisposes you to cancer (in this case, the gene test is said to be 'negative'). In some cases, test results may show that you have a 'variant of unknown significance', which means the test detetcted a change in your gene, but it is not known whether this change predisposes you to cancer or whether it is harmless. If a faulty gene is found, other members of the family can then have a genetic test to see whether they also have the same faulty gene.

If there is no living relative with cancer, or the relative doesn't want to get tested, it may still be possible to do a genetic test for you on the NHS , if your genetic counsellor thinks that your chances of carrying a faulty gene are higher than 10 in 100 based on your family history. For anyone who cannot get tested on the NHS, there are some companies offering private testing. However, this can be very expensive and without a strong family history, there may be no need for testing.

A number of faulty genes have been linked to Lynch Syndrome (formerly known as Non-Polyposis Colorectal Cancer or HNPCC), but it is now understood that people from Lynch families do not necessarily need to have a confirmed faulty gene to be at risk, as many genes that might be linked to Lynch Syndrome are not yet known. However if a faulty gene is found in a member of the family and other members of the family do not have this gene, then those members are at low risk.

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What is my ovarian cancer risk if I am from a Lynch Syndrome family?

If you are from a Lynch Syndrome family, then your chances of developing ovarian cancer are higher than for the general population.

Studies have found that the lifetime risk of ovarian cancer for women with Lynch Syndrome is between 6 to 12 in every 100 women by the time women reach 75 years of age. The exact risk may depend on the gene as there are a number of different genes linked to Lynch Syndrome (for example: MLH1, MSH2, MSH6 and PMS2). Ovarian cancer risk rises with older age.

Pictogram of 6 out of 100 women

About 6 out of 100 women with a faulty MSH1 gene will develop ovarian cancer. About 94 women with a MSH1 faulty gene will not.

Pictogram of 8 out of 100 women

About 8 out of 100 women with a faulty MSH2 gene will develop ovarian cancer. About 92 women with a MSH2 faulty gene will not.

Pictogram of 8 out of 100 women

About 8 out of 100 women with a faulty MSH6 gene will develop ovarian cancer. About 92 women with a MSH6 faulty gene will not.

(Please note: There is currently no exact ovarian cancer risk available for other faulty genes and some genes have not yet been found.)

As you are under 35 at the moment your risk of ovarian cancer is relatively low, therefore you do not need to make a decision about risk-reducing surgery right now. The information in the rest of this decision aid describes the different options and focuses on surgery, therefore you may wish to come back to this at a later point when it is more relevant to you. You should keep in mind that the risk will rise more steeply from age 40 onwards. Most ovarian cancers in women with Lynch Syndrome are diagnosed before the age of 60.

You stated that you are aged between 35 and 39, so your risk of developing ovarian cancer is starting to rise slowly. However, your risk right now is relatively low, therefore you do not need to make a decision about risk-reducing surgery right now. The information in the rest of this decision aid describes the different options and focuses on surgery, therefore you may wish to come back to this at a later point when it is more relevant to you. You should keep in mind that the risk will rise more steeply from age 40 onwards. Most ovarian cancers in women with Lynch Syndrome are diagnosed before the age of 60.

You stated that you are aged between 40 and 49, so your risk of developing ovarian cancer is rising at the moment. Most ovarian cancers in women with Lynch Syndrome are diagnosed before the age of 60.

You stated that you are aged over 50, so your risk of developing ovarian cancer is rising at the moment. Most ovarian cancers in women with Lynch Syndrome are diagnosed before the age of 60.

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What is my risk for other cancers if I am from a Lynch Syndrome family?

Because you are from a Lynch Syndrome family, you are also at higher risk for endometrial cancer, which is cancer in the lining of the uterus/womb. Studies have found that the lifetime risk of endometrial cancer for women with Lynch Syndrome can be as high as 60 in every 100 women by the time women reach 75 years of age. The exact risk depends on the gene as there are a number of different genes linked to Lynch Syndrome (for example: MLH1, MSH2, MSH6 and PMS2). As with ovarian cancer risk, endometrial cancer risk rises with older age.

Pictogram of 29 out of 100 women

About 29 out of 100 women with a faulty MSH1 gene will develop endometrial cancer. About 71 women with a MSH1 faulty gene will not.

Pictogram of 24 out of 100 women

About 24 out of 100 women with a faulty MSH2 gene will develop endometrial cancer. About 76 women with a MSH2 faulty gene will not.

Pictogram of 49 out of 100 women

About 49 out of 100 women with a faulty MSH6 gene will develop endometrial cancer. About 51 women with a MSH6 faulty gene will not.

Due to your family history you may also be at higher risk for colorectal, gastric and other cancers. You should discuss colorectal and other cancer risks with your doctor who will be able to tell you more. Your doctor or genetic counsellor has probably spoken to you about screening options for colorectal and endometrial cancer. To reduce your risk of endometrial cancer you may also consider a risk-reducing hysterectomy (removal of healthy uterus/womb). You can find out more about hysterectomy in this decision aid (see Risk-reducing surgery).

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What is my ovarian cancer risk with a BRCA1 faulty gene?

The risk of developing ovarian cancer for any woman from the general population is about 2 in 100. If you have been found to have a faulty BReast CAncer (BRCA) 1 gene, then your chances of developing ovarian cancer are higher than for the general population.

Graph of ovarian cancer risk for BRCA1 by ageGraph of ovarian cancer risk for BRCA1 by ageGraph of ovarian cancer risk for BRCA1 by ageGraph of ovarian cancer risk for BRCA1 by age

This graph shows how many out of 100 women with a BRCA1 mutation will develop ovarian cancer over their life time.

By age 70 years about 39 of 100 women with BRCA1 will have developed ovarian cancer. 61 women will not have developed ovarian cancer.

Your own age group has been shown with the light grey area. About 3 to 4 of 100 people like you develop ovarian cancer by the time they are 40.About 7 of 100 people like you develop ovarian cancer by the time they are 50.About 15 of 100 people like you develop ovarian cancer by the time they are 60.

Graph created with data produced by Chen et al. (2007)

You said your age at the moment was under 35, so your risk of developing ovarian cancer at this moment in time is quite low. However, your risk is starting to rise now and will start to rise more steeply from age 40 onwards.

You said your age at the moment was between 35 and 39 years, so your risk of developing ovarian cancer at this moment in time is quite low. However, your risk is starting to rise now and will start to rise more steeply from age 40 onwards.

You said your age at the moment was between 40 and 49 years, so your risk of developing ovarian cancer at this moment is starting to rise steeply. Your risk will continue to rise until you about 75 years of age.

You said you are over 50 years old, so your risk of developing ovarian cancer is rising and will continue to rise until about 75 years of age.

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What is my breast cancer risk with a BRCA1 faulty gene?

Because of your BRCA 1 faulty gene you are also at risk of breast cancer.

Graph of breast cancer risk for BRCA1 by ageGraph of breast cancer risk for BRCA1 by ageGraph of breast cancer risk for BRCA1 by ageGraph of breast cancer risk for BRCA1 by age

This graph shows how many out of 100 women with a BRCA1 mutation will develop breast cancer over their life time.

By age 70 years about 54 of 100 women with BRCA1 will have developed breast cancer. 46 women will not have developed breast cancer.

Your own age group has been shown with the light grey area.About 12 of 100 people like you develop breast cancer by the time they are 40.About 20 of 100 people like you develop breast cancer by the time they are 50.About 22 of 100 people like you develop breast cancer by the time they are 60.

Graph created with data produced by Chen et al. (2007)

You said your age at the moment was under 35, so your risk of developing breast cancer at this moment in time is quite low, but starting to rise. Your risk will start to rise more steeply from age 35 and will continue to rise until 75 years of age.

You said your age at the moment was between 35 and 39, so your risk of developing breast cancer has started to rise. Your risk will continue to rise steeply until about 75 years of age.

You said your age at the moment was between 40 and 49, so your risk of developing breast cancer is rising. Your risk will continue to rise steeply until about 75 years of age.

You said your age at the moment was over 50 years, so your risk of developing breast cancer is rising. Your risk will continue to rise steeply until about 75 years of age.

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What is my ovarian cancer risk with a BRCA2 faulty gene?

The risk of developing ovarian cancer for any woman from the general population is about 2 in 100. If you have been found to have a faulty BReast CAncer (BRCA) 2 gene, then your chances of developing ovarian cancer are higher than for the general population.

Graph of ovarian cancer risk for BRCA2 by ageGraph of ovarian cancer risk for BRCA2 by ageGraph of ovarian cancer risk for BRCA2 by ageGraph of ovarian cancer risk for BRCA2 by age

This graph shows how many out of 100 women with a BRCA2 mutation will develop ovarian cancer over their life time.

By age 70 years about 16 of 100 women with BRCA2 will have developed ovarian cancer. 84 women will not have developed ovarian cancer.

Your own age group has been shown with the light grey area. Less than 1 of 100 people like you develop ovarian cancer by the time they are 40.About 2 of 100 people like you develop ovarian cancer by the time they are 50.About 5 of 100 people like you develop ovarian cancer by the time they are 60.

Graph created with data produced by Chen et al. (2007)

You said your age at the moment was under 35, so your risk of developing ovarian cancer at this moment in time is quite low. However, your risk is starting to rise now and will start to rise more steeply from age 40 onwards.

You said your age at the moment was between 40 and 49 years, so your risk of developing ovarian cancer at this moment is starting to rise steeply. Your risk will continue to rise until you about 75 years of age.

You said you are over 50 years old, so your risk of developing ovarian cancer is rising and will continue to rise until about 75 years of age.

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What is my breast cancer risk with a BRCA2 faulty gene?

Because of your BRCA 2 faulty gene you are also at risk of breast cancer.

Graph of breast cancer risk for BRCA2 by ageGraph of breast cancer risk for BRCA2 by ageGraph of breast cancer risk for BRCA2 by ageGraph of breast cancer risk for BRCA2 by age

This graph shows how many out of 100 women with a BRCA2 mutation will develop breast cancer over their life time.

By age 70 years about 45 of 100 women with BRCA2 will have developed breast cancer. 55 women will not have developed breast cancer.

Your own age group has been shown with the light grey area.About 8 of 100 people like you develop breast cancer by the time they are 40.About 15 of 100 people like you develop breast cancer by the time they are 50.About 18 of 100 people like you develop breast cancer by the time they are 60.

Graph created with data produced by Chen et al. (2007)

You said your age at the moment was under 35, so your risk of developing breast cancer at this moment in time is quite low, but starting to rise. Your risk will start to rise more steeply from age 35 and will continue to rise until 75 years of age.

You said your age at the moment was between 35 and 39, so your risk of developing breast cancer has started to rise. Your risk will continue to rise steeply until about 75 years of age.

You said your age at the moment was between 40 and 49, so your risk of developing breast cancer is rising. Your risk will continue to rise steeply until about 75 years of age.

You said your age at the moment was over 50 years, so your risk of developing breast cancer is rising. Your risk will continue to rise steeply until about 75 years of age.

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What is my ovarian cancer risk if no faulty gene was found?

If no faulty gene was found your genetic test is said to be ‘negative’ and there are two possibilities:

  • Someone else in your family has already been tested and has been found to have the faulty gene. Now you have been found not to have this gene. In this case your risk of ovarian cancer is likely to be low.
  • You were the first person to be tested in your family and were not found to have a faulty gene. In this case your risk of ovarian cancer may still be higher than the general population, as science is not yet able to find all the faulty genes that might be linked to ovarian cancer. You should discuss this with your genetic counsellor.

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How will my ovarian cancer risk affect my life?

Being at risk for ovarian cancer does not necessarily mean that you will develop ovarian cancer. However, knowing your risk will give you access to additional medical services such as genetic counselling and means that you may be offered risk-reducing surgery. Some people may feel worried or anxious after finding out about their risk and their quality of life may be affected.

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How will my cancer risk affect my children?

Because you are from a Lynch Syndrome family, there is a chance that your children will also have an increased risk of cancer. There is a chance that your children will also have an increased risk of cancer. As you have a faulty BRCA1 gene, your children have a 50/50 chance to inherit this. As you have a faulty BRCA2 gene, your children have a 50/50 chance to inherit this. Their risk depends on how high your own risk is and on whether or not you have a faulty gene. If you have a faulty gene, then your children have a 50/50 chance to inherit this. If a faulty gene has been confirmed in the family, children can choose to get tested for this gene at any time. The best time to get tested should be discussed with your genetic counselor. If your child/children inherited the faulty gene, then their cancer risk would be the same as yours. If they did not inherit the faulty gene, then their cancer risk would be low. Boys who inherit the faulty gene are not at risk of ovarian cancer, but may be at risk for other cancers. Boys who inherit the faulty gene may also pass it on to their children.

Please also note that cancer risk increases with age and therefore children’s risk only starts to rise in later life. More information about genetics can be found on the NHS choices website (see Contacts and Resources).

You can discuss your children‘s risk with your genetic counsellor to find out more. Your genetic counsellor will also be able to advise you about how best to discuss this risk with your children.

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How can I change how I feel about my cancer risk?

If you would like to find out more about your risk and what it means, you can use the resources provided in OvDex and talk to your doctor or genetic counsellor.

Knowing that you are at increased risk of cancer might make you feel worried or angry or frustrated. This is completely normal and there is no need to bottle those feelings up. It can actually help to talk about them.

You can try to find someone you trust to talk to or if you prefer to talk to someone you don’t know, you can use the contact details for charities and patient support networks under Contacts & Resources. If you have a partner, sharing your thoughts and concerns with your partner can be useful in helping them understand what you are going through and in helping you cope together as a couple.

It may also help to see a positive side to knowing your risk status. For example, this means that you will get access to genetics services and have the chance to do something about your risk. Other women have found it helpful to stay optimistic, have joined patient networks or have found strength in their faith.

Being at risk of cancer may sometimes lead to unwanted thoughts and worry, especially at times when there are no active steps you can take, for example when you are waiting for genetic test results. There are useful techniques you can use to reduce such thoughts. One such method is active distraction, which means actively thinking about something else whenever unwanted thoughts pop in your head. Watch the 'How do I cope' video on the Cancer Genetics storybank website for a guide of how to do this.

Relaxation techniques, meditation and guided imagery may also help you deal with any stress you might experience relating to your cancer risk. Examples include progressive muscle relaxation and certain breathing exercises. Visit the 'Mind-body therapy' section on the Macmillan website for more information on and guides to mind-body therapies.

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