Ovarian Cancer Action

Early diagnosis helps save lives

Around 18 women a day are diagnosed with ovarian cancer in the UK.  It is the fifth most common cancer in females in the UK and the second most common gynaecological cancer after uterine cancer.

Early diagnosis of ovarian cancer is very important.  If the disease is found in the early stages, up to 90% of women will survive for more than five years.  Unfortunately, most women in the UK are not diagnosed with ovarian cancer until it has already spread, making successful treatment difficult and survival rates much lower.

Ovarian cancer cannot be detected by a cervical smear test and there is currently no proven screening tool for the disease.  Because of this, it is crucial that you know the symptoms of ovarian cancer and make an appointment to see your GP if you experience them persistently, frequently or they are new to you.

Statistics on ovarian cancer

• 90% of ovarian cancers are not 'familial' - meaning that most women will not have any family history of this cancer

• Awareness of ovarian cancer symptoms is worringly low - research conducted by Ovarian Cancer Action in 2011 showed that 80% of women did not know that ovarian cancer has symptoms

• Recent research has shown that most women do experience symptoms, particularly very frequent, persistent and sudden onset ones, and these can occur in the early stages of ovarian cancer

• The UK has poor survival rates, and is positioned seventh in the list of European Countries for high ovarian cancer incidence and mortality rates - the main reason for this is the delay in diagnosis because of low symptoms awareness levels

Building a better future

Improving awareness of the common symptoms of ovarian cancer and developing a better understanding of how to treat it more effectively through investment in research, will play a vital role in ensuring women are diagnosed with ovarian cancer at an earlier stage and they receive the most effective treatment.  Ovarian Cancer Action is committed to both and promotes the symptoms of ovarian cancer with national symptoms awareness campaigns and funds innovative research at the Ovarian Cancer Action Research Centre, Imperial College London, and via BriTROC - a collaborative between 8 research centres around the UK.

Ovarian Cancer Action bases its symptoms awareness programmes on the most recent and credible research available.

Ovarian cancer used to be called 'the silent killer', even in medical text books, with most women not being diagnosed until the cancer had spread. But there is now growing scientific evidence that the frequency and combination of particular symptoms could alert women and their doctors to the possibility of ovarian cancer, even when it is in the early stages, when survival rates are much higher¹.

In 2008, the Department of Health consulted with some of the UK's leading cancer charities, scientists, and doctors, and agreed on a number of key symptoms, which are more common in women diagnosed with ovarian cancer. You can read them here.

Diagnosis can be difficult because symptoms are often similar to those caused by more common, less serious conditions.

If you have any of the following symptoms, it is unlikely that they are caused by a serious problem, but it is important that you discuss them with your doctor and ask if they have considered ovarian cancer.  In particular, you should ask your GP whether ovarian cancer should be considered if you experience any of these three symptoms on most days:

• Persistent pelvic and stomach pain

• Increased abdominal size / persistent bloating - not bloating that comes and goes

• Difficulty eating and feeling full quickly

Occasionally other symptoms such as urinary symptoms, changes in bowel habit, extreme fatigue or back pain may also be experienced on their own or at the same time as those listed above.

Guidelines published by the National Institute of Health and Clinical Excellence (NICE) in 2011 state that it is unlikely that women over 50 years of age will develop irritable bowel syndrome (IBS) for the first time.  IBS has similar symptoms to ovarian cancer - however ovarian cancer symptoms are distinctive because they are frequent and persistent.

We have developed a symptoms diary to help you track your symptoms and help your doctor decide what may be causing them.  You can find it here.

¹Goff BA, Mandel LS, Drescher CW, Urban N, Gough S, Schurman KM, Patras J, Mahony BS, Andersen MR. Development of an ovarian cancer symptom index: possibilities for earlier detection. Cancer. 2006 Dec 11
Goff BA, Mandel LS, Melancon CH, Muntz HG. Frequency of symptoms of ovarian cancer in women presenting to primary care clinics. JAMA. 2004 Jun 9;291(22):2705-12.

There are a number of factors which can affect your risk of getting ovarian cancer:

Family history: If you have two or more relatives from the same side of your family (ie from either your mother's OR father's side), affected by ovarian, or ovarian and breast cancer, your risk may be increased. For full details see below.

Age: The majority of cases occur in women over the age of 40. However some types of ovarian cancer do appear in women from the age of 20 onwards.

Childbirth: There is a slightly increased risk to women who have not had children, or breastfed.

Weight: Being overweight may also increase risk.

Ethnicity: Women who are descended from Ashkenazi Jewish, Icelandic, Norwegian, Dutch, Pakistani and Polish populations have been shown to have an increased risk of developing ovarian cancer. Research has shown that these women have a higher incidence of carrying a faulty gene, responsible for inherited risk of developing ovarian cancer.

Other factors: Outside of the risk factors mentioned above, very little is currently known about the causes of ovarian cancer. This is why research into the disease is so important. 

One current area of research is whether women HRT are at a higher risk of developing ovarian cancer. Some research has shown that the different types of HRT have varying levels of risk. The Millennium Study 2007, found that women who take the combined HRT for longer than five years are at an increased risk. Following termination of HRT use, this risk returns to a normal level.

Factors that may help reduce your risk

• Childbirth: the more children you have, the less likely you are to have ovarian cancer.

• Taking the contraceptive pill: A 2008 study indicated that if women take the contraceptive pill over a prolonged time period, there is a lesser risk of developing ovarian cancer - this reduction in risk continued 30 years after women ceased taking the contraceptive pill

• Breast feeding: research suggests that breastfeeding could provide a preventative effect for ovarian cancer

• Having a hysterectomy or having your fallopian tubes removed

• There is some evidence that some painkillers may reduce your risk but further research is needed on this subject

If you recognise any of the following, then it is important to let your doctor know, discuss your history, and if you are still not reassured, seek a second opinion:

• you develop a number of symptoms suddenly

• you experience any of the three key symptoms on most days (persistent pelvic and stomach pain; increased abdominal size/persistent bloating - not bloating that comes and goes; and difficulty eating and feeling full quickly).

• you are being treated unsuccessfully for conditions such as irritable bowel syndrome or urine infections, or experience persistent back pain and/or feel extremely fatigued

• you have a family history (2 or more close relatives) of ovarian, breast, lung, stomach, womb lining (endometrium), lymphona or prostate cancer.

Knowing your family's health history is important. Around 10% of ovarian cancers are due to an inherited faulty gene.  However, having just one relative with the disease does not usually mean you are at increased risk.  Women who may be at higher risk (relative to the general population) of developing ovarian cancer, are those who have on one side of their family (either father's or mother's)

• A first generation relative (mother, sister, daughter) who has had ovarian cancer and also have a second generation relative (aunt, grandmother) who has suffered from ovarian cancer, or

• A first generation relative with ovarian cancer and a second generation relative (male or female) with breast cancer under the age of 50, or

• A first generation relative with ovarian cancer and two or more second generation relatives with breast cancer over the age of 60, or

• Known BRCA1 or BRCA2 gene carriers, or

• Three or more relatives in total with either colon, stomach, ovarian, endometrial or small bowel cancer, or

• A first generation relative of an individual with both breast and ovarian cancer.

If there does appear to be a strong familial connection, then you should make this known to your doctor. 

Currently a CA125 blood test, plus transvaginal ultrasound scan is used to detect ovarian cancer in women who are deemed to be high risk.

The blood test is a specific test which looks to see if you have raised levels of CA125 protein in your blood.  All women have this protein, and sometimes if ovarian cancer is present the CA125 is raised.  However, some women have a naturally high CA125, and other less serious conditions such as endometriosis, pregnancy, benign cysts, pelvic inflammatory disease and fibroids can also cause an increase in the CA125 protein level.  Therefore the test can give false 'positive' responses.   

There are approximately twenty-five other markers of ovarian cancer currently being tested around the world. A smear test will not detect ovarian cancer.

In the UK the UKCTOCS (UK Clinical trial for ovarian cancer screening) is ongoing.  200,000 randomly selected post menopausal women were recruited to complete its study into the potential effects of screening using the CA125 test and transvaginal ultrasound.  Its results will not be published until 2015. You can find out more about the UKCTOCS trial here. 

A very recent US study has just reported interim results declaring that whilst these screening methods did detect ovarian cancer both in the early and late stages, there were unacceptably high levels of surgery performed on women who ultimately did not have the disease. You can read the study here. 

There is a UK trial for women with a strong familial history of the disease (UKFOCCS). Recruitment for this study ended in March 2010. For further information please call the UKFOCCS team on 020 7380 6916.

It is important to develop and maintain a healthy lifestyle, by eating plenty of fresh fruit and vegetables, and taking regular exercise. Suppressing ovulation can reduce risk, but must be discussed with a doctor. Methods can include long term use of the contraceptive pill, several pregnancies and breast feeding, or removal of the ovaries (oopherectomy).