Information & support Information booklets What happens if you are diagnosed with ovarian cancer . Download booklet Order printed booklet . On this page What if my GP thinks I have ovarian cancer? Your first hospital appointment The second appointment Having surgery first Having chemotherapy before surgery At the end of your treatment Helping yourself . Ovacome is a national charity providing support to anyone ovarian cancer. We give information about symptoms, diagnosis, treatments and research. Ovacome runs a telephone and email support line and works to raise awareness and give a voice to all those affected by ovarian cancer. This booklet is part of a series giving clinical information about ovarian cancer. It explains what happens when you are diagnosed and suggests questions for you to ask to help yourself. . What if my GP thinks I have ovarian cancer? If your GP suspects you may have ovarian cancer they might ask for a blood test to measure your CA125. This is a protein that can be raised in ovarian cancer, but it can also be raised for reasons that are unrelated to cancer. The GP may also ask for an ultrasound examination of your abdomen and pelvis. If it is a transvaginal ultrasound, this would mean putting the ultrasound probe into your vagina to get a good view of the ovaries. If you are not comfortable with this you can ask for an abdominal ultrasound. You do not have to give a reason. If the results of these tests suggest that you may have ovarian cancer, your GP should refer you within two weeks to a specialist gynaecological oncologist. This is a doctor who is a gynaecologist with extra training and skills in treating those who have or may have cancer. You should receive a confirmed diagnosis within 31 days of cancer being suspected. . Your first hospital appointment Your specialist should explain what happens next and how a diagnosis will be made. You may have an MRI or CT scan and an ultrasound or CA125 blood test if these have not been done already. You will be given an appointment to return and discuss the results of your tests. Before this second appointment your results will be reviewed by the multidisciplinary team (MDT) that will oversee your care. The MDT is made up of specialist gynaecological cancer surgeons; oncologists, who can give chemotherapy; radiologists who will look at your scans and pathologists who will look at your biopsy tissue under the microscope to ensure your diagnosis is correct. They will discuss the best treatment plan for you. . The second appointment At the second appointment, if your tests suggest you could have ovarian cancer, you may be advised by the MDT to have surgery to remove the cancer and confirm the diagnosis. If your scans have shown that cancer is present, or has spread, the MDT may advise you to have chemotherapy first to reduce the tumour, followed by surgery and further chemotherapy. When surgery occurs in the middle of chemotherapy it is called interval surgery. Your specialist should tell you about the risks and benefits of these procedures, including side effects. You should be given time to think about the options. You should also be told about support services available to you. In 2020 we were all affected by COVID 19. The NHS now has to minimise the risks of infection which means you may have remote appointments using the telephone or online. You may be asked to come to clinic appointments on your own. You can bring a mobile phone to the appointments so you can call a friend or family member to listen to your consultation. You may also be able to record your appointment. . Having surgery first After this appointment, if it is decided that you should have surgery followed by chemotherapy you will receive a date for admission to hospital for your operation. You will usually be asked to attend a preoperative assessment a few days before surgery. . Here are some questions you may want to ask: If I need surgery, what will be removed? Can all the cancer be taken away? What are the risks? Can my fertility be preserved? Are there any other tests I need beforehand? How long will I be in hospital How soon will I be able to get back to normal – before I can drive or have sex? Will the surgery cause an early menopause? When will I get the results of the surgery? What will happen following surgery? Is there someone I can speak to before going into hospital if I have any questions? If your cancer is diagnosed at a very early stage you may not need chemotherapy after surgery. If you do need it, you will be offered chemotherapy when you have recovered from your surgery. This usually involves a cycle (dose) of chemotherapy drugs every three weeks for six cycles, lasting 18 weeks. . Having chemotherapy before surgery Sometimes the cancer cannot be completely removed by surgery immediately. In this case your clinical team will recommend that you have chemotherapy first, to shrink the cancer. The surgical team will usually arrange a biopsy first of all to check that the diagnosis of ovarian cancer is correct. This is often carried out by a radiologist who will use scans to locate the best place to take a sample. The biopsy is taken using local anaesthetic to numb the skin. After the biopsy your surgeon will refer you to an oncologist who will organise your chemotherapy. You will probably be advised to have three cycles of chemotherapy, one every three weeks for nine weeks. If you are not well your oncologist may recommend a smaller dose of chemotherapy every week for nine weeks before your operation. Each cycle is given over a day in hospital as an outpatient. . You may want to ask: What choices do I have for my treatment? How will I know if the treatment is working? Will I experience side effects and how long are they likely to last? What is available to help with side effects? Are there any other ways of helping myself during treatment? Will I be able to carry on working? Who can I contact if I have any questions or problems? . When you have completed the three cycles of chemotherapy you will be reviewed. You may have another scan to check that the tumour has shrunk enough and arrangements will then be made for surgery. After your operation you will usually have three more cycles of chemotherapy. If there is any of the tumour left at the end of surgery your doctor may suggest using bevacizumab (Avastin), a targeted treatment that interferes with the cancer’s blood supply. This can postpone a recurrence of the illness. You may be offered other drugs that are used as maintenance therapies that can prevent or delay the cancer from coming back. These include PARP inhibitors such as Olaparib which act on the cancer’s DNA to stop it repairing itself. You can find more information in Ovacome booklet 21 Targeted therapies. You can also find out more about PARP inhibitors, and the BRCA gene here. At the end of your chemotherapy you may have another scan to check if any of the cancer can still be seen. . At the end of your treatment At the end of chemotherapy or maintenance therapy a scan might be carried out, then you will have follow-up outpatients’ appointments. These may be face-to-face or using the telephone or online. You will be asked about your health and have a blood test. If you develop further symptoms you may have a scan. When you have had a lot of hospital treatment it can be hard to adjust to not being treated or monitored every few weeks. You may feel uncertain about your health and have a lot of questions. You can speak to your clinical nurse specialist (CNS) or call the Ovacome support line. . You may want to ask: How will I be followed up, and for how long? What further investigations may be done? What should I be looking out for? Who can I contact between appointments? How long will it take to recover? Can I use HRT? . Helping yourself When you are told you have cancer, you are likely to feel very frightened, uncertain, alone and angry. This is a normal and understandable reaction. These feelings may sometimes overwhelm you and stop you from carrying out your usual activities, such as sleeping, eating or working. Some people develop depression after their diagnosis or during and after treatments. This can cause poor sleep leading to tiredness, loss of appetite, tearfulness and pessimistic thoughts. Sometimes depression can cause feelings of anger. If this is happening to you, it is very important to know that help is available. It is not a sign of weakness; you are in a very difficult situation and need help and support. Seeking treatment is important. Your mental health is as important as your physical wellbeing. . Talk to someone! Talking to someone about your feelings may be helpful. You may be reassured or directed to someone else who could help. Talking through your worries can stop you feeling so helpless. . Counselling When life becomes very uncertain and stressful, it can help to talk to a counsellor. They are trained to listen and to help you understand your thoughts and feelings. Your GP or clinical nurse specialist (CNS) may be able to put you in touch. . Dealing with other people Other people’s reaction to your illness can vary. Some people may seem to avoid you. Others may be over cheerful and not realise how difficult things are for you. This may even be the reaction of those closest to you, usually because they don’t know what to say and are afraid of upsetting you. They may be feeling frightened and confused themselves. You could respond by saying: ‘I feel angry about what has happened. Can we talk?’ or ‘Things are difficult but I don’t want to talk about it at the moment’. This shows others what you would find helpful from them. It is normal to want to talk about your problems one moment, but not a few hours later. Sometimes people may tell you that you must stay positive. This may be helpful or not, but you should not feel guilty if you are not able to feel positive all the time. It would be very unusual if you did not have some low points. . Support groups No matter how close your friends and family are, it may be helpful to talk to people going through a similar experience. It can be reassuring to speak to someone who has ‘been there’. It can be a chance to talk through some of the worries you might not want to mention to your family in case you upset them. Ovacome offers support and services including a free support line on 0800 008 7054. There is information and advice on our website www.ovacome.org.uk which has a list of local support groups. It also has My Ovacome, a lively online forum you can join on the HealthUnlocked website. You may want to read our magazine too. Your clinical nurse specialist (CNS) should know if you have a support group in your area. . Self-help Self-help can involve relaxation, complementary treatments, such as reflexology and massage, or changing your diet. Do check with your medical team before starting a new therapy or diet. You can get more information about complementary therapies by contacting Penny Brohn UK on 0303 300 0118 or by visiting their website. . If you would like more information on the sources and references for this booklet, please call us on 0800 008 7054. If you would like to discuss anything about ovarian cancer, please phone our support line on 0800 008 7054 Monday to Friday between 10am and 5pm. You can also visit our website at www.ovacome.org.uk . . Reviewed by Gordon Jayson PhD FRCP Professor of Medical Oncology, Christie Hospital and University of Manchester . Disclaimer Ovacome booklets provide information and support. We make every effort to ensure the accuracy and reliability of the information at the time of printing. The information we give is not a substitute for professional medical care. If you suspect you have cancer you should consult your doctor as quickly as possible. Ovacome cannot accept liability for any inaccuracy in linked sources. v.3.2 Date last updated May 2020 Date for review May 2022 . Did you find this fact sheet helpful? We welcome your feedback. If you have any comments or suggestions, please email [email protected] or call 0207 299 6653.