Familial Cancer Clinic Information Sheet Surgery to prevent ovarian cancer. 1 Introduction... 2

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1 Contents Familial Cancer Clinic Information Sheet Surgery to prevent ovarian cancer Version 1, June 2009 Familial Cancer Clinic Institute for Women s Health 1 st Floor, Maple House 124 Tottenham Court Road W1T 7DN Telephone: Fax: michelle.johnson@ucl.ac.uk 1 Introduction What is the risk of developing ovarian cancer in your lifetime? 2 3 What is Risk Reducing Salpingo-oophorectomy (RRSO)? Am I a suitable candidate? What are the main advantages of undergoing surgery? What are the main disadvantages of undergoing surgery? Is there a chance that cancer can be found? Can the symptoms of menopause be controlled? What does the surgery itself involve? Is it necessary to remove my womb as well? What are the complications of RRSO? Can women die from RRSO? Apart from surgery, what else can I do to manage my risk of ovarian cancer? Sources of further information 7 1

2 Introduction This leaflet is designed to answer questions you may have about surgery to remove your ovaries and fallopian tubes, known as Risk Reducing Salpingo-Oophorectomy (RRSO). If you are considered to be at high risk of ovarian cancer due to your family history of the disease, you may be considering this operation. The information in the booklet discusses the short and long term implications of having your normal ovaries removed in order to reduce your risk of ovarian cancer. Being aware of all the available facts will help you make an informed decision about whether this type of surgery is right for you. 2. What is the risk of developing ovarian cancer in your lifetime? Your risk of developing ovarian cancer depends mainly on your family history. There are broadly 3 groups of women: 1) Low risk Most women do not have a close relative with ovarian cancer and have a low risk of developing ovarian cancer themselves. The risk of developing ovarian cancer by the age of 75 in this group is approximately 2% (i.e. 1 in 48 women). For comparison the risk to women of developing breast cancer is higher (approximately 11% or 1 in 9 women). 2) Intermediate risk Some women have a mother or sister or daughter (one relative only) who has ovarian cancer. The risk of developing ovarian cancer by the age of 75 in this group is approximately 4% (i.e. 1 in 25 women), which is still less than the risk of developing breast cancer. Others have a slightly increased risk as they have a combination of relatives with breast and ovarian cancer in the family, but their risk is still below that of the women described below. 3) Increased risk A small number of women belong to families with 2 or more close relatives who have had ovarian cancer or developed breast cancer at young age. The risk of developing ovarian cancer by the age of 75 in this group is 10% or more (more than 1 in 10 women). Included in this group, are a small number of women who are found to have a fault (known as a mutation) in either one of the two genes, BRCA1 and BRCA2. The risk of developing ovarian cancer by the age of 75 in a woman with a mutation is about 45% (1 in 2) and in a woman with a BRCA2 mutation is about 27% (1 in 4). Gene Mutations In some families, the increased risk of cancer is related to an inherited faulty gene, which is passed down through the family. Two of the genes involved in ovarian cancer, BRCA1 and BRCA2, have been identified. They are protective genes involved in repair of damaged DNA. A mutation in either of these genes results in an increased susceptibility to cancers of the ovary, fallopian tube and breast. Testing for a gene mutation in the family usually begins with a test on a blood sample from the person who had cancer. If a gene mutation is found, other members of the family can have a genetic test to see if they also carry the same mutation. Some high risk women may have had genetic testing and be confirmed carriers of a mutation in the BRCA1 or BRCA2 gene. Other high risk women may not have had 2

3 genetic testing for various reasons. The lifetime risk of ovarian cancer may be as high as 27% (1 in 4) in BRCA2 mutation carriers and 45% (1 in 2) in BRCA1 carriers. Women at risk of ovarian cancer are also at increased risk of cancer in the fallopian tubes (the tubes along which eggs released from the ovary travel into the womb). 3. What is Risk Reducing Salpingo-oophorectomy (RRSO)? RRSO is surgery to remove your normal looking fallopian tubes (salpingectomy) and ovaries (oophorectomy). The aim is to remove the tissue in which cancer can develop. 4. Am I a suitable candidate for RRSO? You are considered suitable, if you have seen a specialist and been found to be at high risk of developing ovarian cancer on the basis of your family history and, when possible, results of genetic testing. It is important that you establish your risk category before you undertake such surgery. 5. What are the main advantages of undergoing surgery? 1) It removes the risk of ovarian and tubal cancer. However, the surgery does not alter your risk of primary peritoneal cancer (the peritoneum is the lining of the pelvis and abdomen). This cancer can also occur in high risk women, but is rarer than ovarian or tubal cancer. The overall risk of cancer is therefore reduced by approximately 98%, leaving a residual 2% (1 in 50) risk of primary peritoneal cancer. 2) It decreases the risk of developing breast cancer by up to half in high risk women if surgery is done before the menopause. 3) It prevents benign disease of the ovaries (e.g. cysts). 6. What are the main disadvantages of undergoing surgery? 1) You will not be able to become pregnant once your ovaries have been removed. 3

4 2) The surgical removal of both ovaries will result in an abrupt onset of menopause if you have not already reached it. If this is the case, you may begin to experience menopausal symptoms e.g. hot flushes, night sweats, mood swings, tiredness, vaginal dryness and loss of libido (sex-drive). The symptoms of menopause can usually be overcome by hormone replacement therapy (HRT). You will also stop having periods once your ovaries are removed. In addition, you may be at increased risk of osteoporosis (thinning of the bones) and heart disease if you have the operation done before you have reached a natural menopause. Again, these risks are minimised by using HRT. It is important to understand that if you have already had breast cancer, you may not be able to take HRT. 3) There is the small risk of complications associated with having surgery (details below). 7. Is there a chance that cancer can be found? Occasionally, a very early microscopic ovarian or tubal cancer is found when the tubes and ovaries are examined following surgery. The chance of this occurring is approximately 3% (1 in 30). In this situation, you may need to undergo further surgery during the next few weeks. This usually involves a hysterectomy and biopsies, which is routine in the treatment of ovarian and tubal cancer. 8. Can the symptoms of menopause be controlled? Yes, Hormone Replacement Therapy (HRT) will control most of the symptoms of menopause. It is important that women below the age of 50 who have this surgery take HRT to avoid menopause symptoms and prevent bone and heart disease. Women with an inherited risk of ovarian cancer (high risk women) are also at risk of breast cancer and therefore may be concerned about using HRT. If you are concerned, it is important to be aware that the situation is very different for women who have reached the menopause compared with women who have not reached the menopause. It is also important to understand that if you have already had breast cancer, you may not be able to take HRT. 1) Women who have not reached the menopause If HRT is taken after removal of the ovaries, it is replacing hormones that would have been naturally produced by the ovaries until the menopause (average age 51 years). There is no evidence that use of HRT in this situation increases risk of breast cancer. Indeed, the balance of evidence suggests that pre-menopausal removal of the ovaries followed by HRT reduces the risk of breast cancer, possibly because the dose of estrogen in HRT is less than the levels that would have been produced naturally. 2) Women who have reached the menopause A woman is considered to have reached the menopause if she has not had a period for at least 12 months. Studies have shown that HRT use for over 5 years increases the risk of breast cancer in postmenopausal women. Routine HRT use after the menopause is not recommended particularly in 4

5 women at increased risk of breast cancer. However, occasionally the symptoms of the menopause may be so marked that the benefits of HRT outweigh this concern. In these circumstances use of HRT may be advised after careful consideration and discussion with your doctor. 9. What does the surgery itself involve? RRSO can be carried out in one of two ways. 1) The first method involves keyhole surgery (laparoscopy). Three or four small cuts (called incisions) are made on your tummy (abdomen). These normally measure 0.5 to 1 cm in length. One is hidden in the tummy button (umbilicus); another may be placed just above the bikini line and one on either or both sides of the tummy. The surgeon places a special telescope in the tummy button incision. This relays pictures of the inside of your abdomen to a television screen, so the surgeon can see what they are doing. Surgical instruments are then passed through the other incisions. The ovaries and fallopian tubes are then removed via the incisions. 2) Alternatively, there is the more traditional open method, which involves a bikini line incision. Occasionally, an up and down incision is required. Sometimes it is not possible to perform RRSO using the telescope and a small number of women (less than 1 in 20) who opt for keyhole surgery have an open incision performed instead. This could be for any number of reasons including technical problems during surgery, obesity, scarring from previous operations, or bleeding during the procedure. Women who have had previous abdominal surgery are also more likely to need an open incision. The average hospital stay associated with keyhole surgery is 2 days, compared with 5 days for open surgery. After keyhole surgery it is possible to return to normal activity in 2-3 weeks. With open surgery the average return to normal activity is 6 weeks. 10. Is it necessary to remove my womb as well? A small number of women in the high risk group have an underlying condition called Lynch Syndrome (also known as Hereditary Non-Polyposis Colorectal Cancer Syndrome or HNPCC). This condition increases the risk of cancer of the womb lining (endometrial cancer). Unless you are thought to have Lynch Syndrome, the risk of you developing cancer of the womb is not high enough to justify removing your womb as a precaution. Removal of the womb (hysterectomy) is a more major operation than removal of the tubes and ovaries and therefore has a higher chance of causing complications (see below). Hysterectomy should only be done at the time of RRSO if a woman is thought to have Lynch Syndrome, or if she has symptoms due to benign problems with her womb which can t be treated by simpler means. If you think this may apply to you, please discuss hysterectomy with your surgeon before you come in for surgery. 11. What are the complications of RRSO? 5

6 All surgery carries the risk of minor complications. Minor complications include those that have no long-term effects but may delay recovery. Wound infections, urine infections and a chesty cough are among the more common examples. There is a small chance that a woman might need a blood transfusion following RRSO or develop a blood clot in the leg (deep vein thrombosis or DVT). Serious complications that can occur during the operation include damage to the bowel, bladder or a blood vessel. Should this happen during keyhole surgery, the operation may be converted to an open procedure in order to repair any damage. It is possible for injuries to go unnoticed at the time of surgery because the injury is so small or it has occurred outside of the field of vision. This is extremely rare, but should it happen, a second operation might be required. The list of possible complications that may occur during surgery is quite long, and so only the most common have been mentioned here. It is important to bear in mind that the vast majority of women do not experience any serious complications at all and have an uneventful operation and post-operative recovery. If you are concerned about any complications, please speak to the doctor and nurses in the ward who will give you more information. 12. Can women die from RRSO? There is a very small risk of death from any operation. This is more likely to occur in women who have medical or surgical problems before the operation. 13. Apart from surgery, what else can I do to manage my risk of ovarian cancer? Ovulation is the production of eggs by the ovaries. It is thought that preventing ovulation offers protection from ovarian cancer. Oral contraceptive pill (OCP) use, pregnancy or breast feeding can have this effect on ovulation. Research has shown that 5 years of OCP use reduces the risk of developing ovarian cancer by half. Taking the pill is often a simple and safe way to try to reduce the risk of ovarian cancer. There may however be a small increased risk of developing breast cancer with the pill. Currently, we think that high risk women may benefit from taking the pill for five years, ideally after the age of 30. This decreases the risk of ovarian cancer by half while not increasing your breast cancer risk significantly. Screening for ovarian cancer may detect the disease in its early stages in some women. This involves two tests: a blood test for a substance called CA125 and an ultrasound scan. These tests do miss some women with ovarian cancer. Furthermore, the tests can be abnormal in women who do not have cancer and may cause worry and sometimes, unnecessary surgery. It is important that you appreciate that we still do not know if screening works and research is ongoing. There is a separate leaflet about ovarian cancer screening that you can request using the contact details at the back of this booklet. 6

7 Please use the space below to write down any further questions or concerns you may have so that you can discuss them with the doctor during your appointment. Sources of Further Information Ovarian cancer screening UK FOCSS Team Gynaecological Cancer Research Centre UCL Institute for Women s Health 149 Tottenham Court Road London W1T 7DN UKFOCSS@ucl.ac.uk Ovarian cancer CancerBacUp and Macmillan Cancer Support Ovacome This leaflet was developed by University College London Hospital s Familial Cancer Clinic team and the UK FOCSS team at University College London. 7