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1 Understanding ovarian cancer An information sheet for women with ovarian cancer, their family and friends If you or someone you love has recently been diagnosed with ovarian cancer, you re sure to have dozens of questions swimming around in your head: what is it, what caused it, why wasn t it discovered sooner, what will happen in the future? We ve written this information sheet to answer many of these most urgent questions that come soon after a diagnosis of ovarian cancer. Other Ovarian Cancer Australia information sheets will tell you more about treatment, support systems and complementary therapies and clinical trials. What are the ovaries? The ovaries are two small almond shaped organs that are part of the female reproductive system. Each ovary measures about 2 4 cm across and they sit on either side of the uterus (which is sometimes called the womb). Each ovary contains germ cells that eventually develop into eggs (ova). In women who are menstruating, a mature egg is released by the ovary each month (this is called ovulation). Your ovaries also produce the hormones oestrogen and progesterone, which regulate your menstrual cycle and affect the development of female body characteristics such as breasts, body hair and body shape. What is cancer? Our body is constantly producing new cells to allow us to grow and to replace old or injured cells. These cells usually grow in a predictable and organised way. But sometimes cells behave and grow abnormally and form a growth or lump called a tumour. A tumour can be benign or malignant. Benign tumours are not cancerous and do not spread outside their original area. Malignant tumours are cancerous and can grow into other tissues that are close by. They can also spread to other parts of the body where they can cause secondary cancers or metastases. What is ovarian cancer? Ovarian cancer is a malignant tumour originating in either one or both ovaries. Understanding ovarian cancer Page 1

2 There are four main types of ovarian cancer, and these are named after the type of cells where the cancer begins growing: Epithelial ovarian cancer begins in the epithelium, which contains the cells in the outer covering of the ovary. This is the most common type of ovarian cancer, accounting for 9 out of 10 cases. It most often affects women after menopause. Statistics can be misleading. It s important just to see where you are today and to keep walking ahead doing your best. June Smith Ovarian cancer survivor and Ovarian Cancer Australia patient advocate Borderline tumours are another type of epithelial tumour that grows much more slowly than regular epithelial tumours. Borderline tumours can usually be successfully removed by surgery, even if they are found at a late stage. Germ cell ovarian cancer begins in the cells that eventually develop into eggs. This type of ovarian cancer is very rare and accounts for about 5% of ovarian cancers. Germ cell tumours are especially unusual because they mainly occur in young women 50% are in women younger than 21. Sex cord stromal cell ovarian cancer begins in the ovary cells that release female hormones. These tumours account for about 5% of ovarian cancers and can affect women of any age. Both germ cell and sex cord stromal cell ovarian cancers respond well to treatment and are often curable. What are the different stages of ovarian cancer? As well as being classified by the cells in which it begins, ovarian cancer is classified into stages from 1 to 4. The stage tells you whether the cancer is just in the ovaries or has spread. These stages are described in the Ovarian Cancer Australia s Treatment information sheet. Why did I get ovarian cancer? We don t know the cause of ovarian cancer. We do know that there are some factors that may increase a woman s risk of developing ovarian cancer. But many women who develop ovarian cancer do not have these risk factors while many women who do have the risk factors do not develop ovarian cancer. The risk of developing ovarian cancer increases with age, and women aged over 50 are more likely to develop ovarian cancer. Although it s more common in older women, ovarian cancer can affect women of all ages, including teenagers. Other risk factors may include: Being a white (Caucasian) woman living in a westernised country with a high standard of living. Understanding ovarian cancer Page 2

3 Never being pregnant, having a small number of pregnancies or never having taken the contraceptive pill. This may be because pregnancy and the pill give the ovaries a rest from ovulation. Having taken several courses of fertility drugs. Using oestrogen only HRT for 10 or more years. Being of Ashkenazi Jewish descent. Having a high fat diet and being overweight. Smoking cigarettes. What about genetic risk factors? Between 5 and 10% of ovarian cancers are caused by inheriting a damaged gene that can increase your risk of certain cancers. These same genes can also be responsible for some breast, colon and endometrial (lining of the uterus) cancers. If you have a family history of ovarian, breast, colon or endometrial cancer, or you have had these cancers yourself, you may have inherited an increased risk of developing ovarian cancer. If you do have a family history of these cancers, you may like to talk to a genetic counsellor about the possibility of genetic testing either for yourself or for your children or other family members. Genetic counsellors work at most major public hospitals throughout Australia. Could I have prevented ovarian cancer? There is currently no known way of preventing ovarian cancer. What if I had gone to my doctor earlier or had more tests? Ovarian cancer is a frustrating disease: the early symptoms are often vague and are like those of many other health problems, and so going to your doctor earlier may not have resulted in your cancer being diagnosed at an earlier stage. It s possible that you didn t have any symptoms when your cancer was first developing. Some internet information encourages women to ask their doctor for a regular CA125 test as a way to screen for ovarian cancer. Unfortunately, detecting ovarian cancer isn t that simple. CA125 is a protein in the blood, which is a tumour marker. The level of CA125 increases in about 50% of women with early stage ovarian cancer and 80% of women with an advanced stage of ovarian cancer. The level may also rise because of other diseases that are not cancer, such as endometriosis or fibroids. For these reasons, the CA125 test is not a reliable screening test for ovarian cancer: it would simply result in too many cancers being missed and too many women being incorrectly diagnosed. Understanding ovarian cancer Page 3

4 Although the CA125 test cannot be used to screen for ovarian cancer, it is still a useful test to help with diagnosis when used with other tests in women who have symptoms. The test is also used as a way to check on the progress of ovarian cancer and to measure the effects of treatment. The Pap test that is used to screen for cervical cancer does NOT detect ovarian cancer. Researchers throughout the world are working tirelessly to develop an early detection test for ovarian cancer. How long will I live? Every woman s experience of ovarian cancer is different. How well your cancer responds to treatment and what this means for you in the longer term will depend on the type of ovarian cancer you have, the stage at which it was diagnosed, the grade of the tumour, your general health and your age. The number of women living longer after their diagnosis is increasing each year. Most ovarian cancer, even when advanced, responds well to treatment. If your cancer cannot be cured, it may still respond very well to treatment, meaning that you have fewer symptoms for a longer period of time. Always remember that there are a lot of statistics, but you are an individual. Sources used for this information sheet Ovarian Cancer Australia s web site includes more information on understanding ovarian cancer as well as links to other web sites that contain a wealth of information on different ovarian cancer topics. Understanding ovarian cancer Page 4

5 Sources used for this information sheet continued... Click on Publications and then download or call to order the booklet Epithelial ovarian cancer Understanding your diagnosis and treatment. The booklet provides detailed information about all aspects of epithelial ovarian cancer. The Cancer Council web site and links to its member web sites in each state and territory provide detailed information on all aspects of cancer. This information sheet has been produced by Ovarian Cancer Australia Limited. This project was undertaken with funding assistance from the Australian Government as part of the Building Cancer Support Networks project and through the ongoing support of MLC. Research and writing by On the Ball Communications. All information has been checked by relevant medical specialists. Please note: The information in this sheet is not medical advice and is not intended to replace the advice of your health care professional. Last reviewed: January Clinical Trials Page 5