All the information you need relating to treatment if you've just been diagnosed with ovarian cancer.
It's common to treat ovarian cancer with surgery to remove as much of the cancer as possible, and chemotherapy (drugs that aim to kill cancer cells).
Your treatment will depend on the type of ovarian cancer you have, as well as the stage and grade. You may have surgery before starting chemotherapy treatment, or your oncologist may recommend starting chemotherapy first. In this case, your chemotherapy will continue once you have recovered from surgery. Occasionally if the cancer is diagnosed at a very early stage it may be treated by surgery alone. In some cases, surgery is considered either too risky or unable to completely remove all visible cancer and chemotherapy will act as your initial treatment.
All of these treatment options can be very effective. Your oncologist and surgeon should discuss with you what treatments are available, based on your individual clinical needs and what is available locally, and your personal preferences should be taken into account.
Read about the different types of treatment for ovarian cancer and what you can expect.
Some women have detailed discussions about treatment choices, while others prefer to ask their oncologist to recommend an option. You may find yourself caught up in a medical whirlwind, talking with health professionals about what happens next. Take a moment and think about what you want, making sure you have the information you need to make any decisions or choices put to you.
Whatever your feelings it can be useful to share your thoughts about the following with your oncologist or clinical nurse specialist (CNS):
How much do you want to know?
When do you want to know it?
How do you want to make your decisions? Do you need time to absorb information, or need to talk it through with others first?
Is the expectation/intention of the treatment that you will achieve a cure, control of the cancer or manage symptoms?
The key decisions
Key decisions about treatment options include where to have your treatment, the timing of surgery and/or types and timing of chemotherapy and other drugs. Asking some of the following questions may help you decide what you want to do:
Where can I be treated?
What treatment options are available?
Would a different specialist centre offer me other treatment options?
What are the benefits of a particular treatment and what is the evidence that it is effective?
What are the risks involved in having the treatment now and in the long term?
Are there potential side effects? How long are these side effects expected to last? What might help to reduce, control or recover from these side effects?
Will I be able to go on holiday?
When will I be able to return to work?
How might the treatment affect me physically and sexually?
Your CNS has a special role to play to make sure your views are represented so let them know how you feel, and what is affecting your decision-making. This may well include things that are going on outside the hospital, in your home or work life.
It might help to take along a friend or family member, particularly one who is calm and listens to you. Talk them through what you want to know and ask them to write down the answers to questions you ask. Health professionals might slip into medical jargon – just ask them to explain it another way.
After discussing treatment options with your oncologist, you might still feel uncertain about how to proceed. If you wish to get a second opinion, just ask. Your CNS or your GP should be able to advise you on how to go about this, and your oncologist should be happy to refer you.
Before your surgery
You will be examined and given a series of tests to check that you are fit enough to have surgery. Your surgeon will explain what will happen during the operation. It is often difficult for the surgeon to know exactly how much surgery is needed as this will depend on the size and type of the cancer so they may discuss different possibilities and options with you. Surgery will also confirm the staging and grading of your cancer.
For many women with ovarian cancer, surgery normally includes removing the womb and cervix, both ovaries and fallopian tubes, and the omentum (a sheet of fat that hangs in front of the tummy). It may also involve removing lymph nodes and parts of other organs that may be affected. This is sometimes called debulking or extensive or ultra-radical surgery.
In some cases, in order to ensure that all of the cancer is removed, surgery may include removal of a part of the bowel. This may result in the creation of a stoma.
If you have any questions, concerns or fears about your surgery, don't be afraid to raise them with your surgeon or talk to the nurses about how you are feeling. If you think of questions later you can also ask your Clinical Nurse Specialist (CNS) or key worker about anything you didn't understand.
After your surgery
Surgery puts your body through a great deal of stress, so it's important to allow time to heal and recover. In the first weeks following your surgery you should take things very gently and give yourself lots of time to rest. Listen to your body as you gradually increase your level of activity: it will tell you how far you can go and what you can take on, depending on how you feel.
Will you be in pain? You will be given medication to make sure you are as comfortable as possible.
How tired will you be? It is usual to feel tired after surgery as your body is working hard to recover. You may experience fatigue or extreme tiredness. It is important to build up activity gradually to help you deal with this.
If you have had surgery that involves removing sections of the lymphatic system (like lymph nodes) you may be at risk of lymphoedema. There are lots of ways to manage the symptoms of lymphodema.
If you are concerned about any side effects, contact your CNS.
Chemotherapy is given to kill cancer cells that may remain in your body after surgery. The drugs are given through a drip into a vein and the treatment is given over several hours.
What chemotherapy will you have?
Usually you will be offered a combination of platinum-based chemotherapy (usually carboplatin but sometimes cisplatin) and paclitaxel (most commonly called Taxol). Sometimes carboplatin will be recommended on its own.
It's standard practise to give chemotherapy once every three weeks for six cycles. There's research into giving smaller weekly doses and having chemotherapy directly into the stomach (intraperitoneal chemotherapy), but these are not yet standard treatments.
What happens when you have chemotherapy treatment?
Most women go to the chemotherapy unit at their local hospital. You'll usually spend most of the day at the hospital so take a relative or friend to keep you company, or a couple of magazines and a good book to help pass the time.
At the hospital a number of blood samples will be taken for testing before each cycle of chemotherapy. These test different parts of the body to check you are healthy enough to receive treatment. Once your blood test results are available, your treatment can start.
You'll be shown into the treatment room where you will be invited to settle yourself in a comfy chair. The chemotherapy nurse will place a needle into one of the veins on your hand or arm and attach a drip so that the drugs can enter your bloodstream. This might feel a bit uncomfortable as the drip goes in.
If you're having carboplatin and paclitaxel then the nurse will give you the paclitaxel first, followed by the carboplatin.
Will you have any side effects?
Many women experience mild side effects that can be easily treated; it's rare for side effects to be severe. The side effects do not usually start straight away and most people are able to drive home from hospital.
It can be worrying to consider all of the possible side effects but remember most women will not experience all of these and hopefully those that do affect you will be mild.
Chemotherapy reduces the number of white cells in your blood, which means your ability to fight infections may be affected. You'll need to contact the hospital immediately if you get a temperature or feel ill in the days or weeks following treatment. There's no need to avoid family, friends and other members of the public, but you should avoid people with serious infections.
Your hospital should give you a 24-hour helpline number to ring if you're feeling ill at any time during your chemotherapy and in the weeks after treatment.
Other common side effects of chemotherapy can include:
Tiredness and fatigue – most women feel very tired during chemotherapy so it's important to plan time to recover your energy.
Feeling or being sick – you'll be given anti-sickness medication to take home. If you're sick you need to contact your chemotherapy team and they'll change your prescription.
Tingling or numbness in hands and/or feet – chemotherapy can affect your nerves, which may cause your feet or hands to tingle or feel numb. This is known as neuropathy.
Some women have reported symptoms which they refer to as 'chemo brain' or 'chemo fog'. This is the inability to think as clearly after chemotherapy as you did before treatment.
Hair loss – nearly all women treated with paclitaxel will experience temporary hair loss, which will usually start two to four weeks after treatment begins. You may be offered a cold cap to help minimise hair loss. Cold caps can be uncomfortable and treatment takes longer; however, some women find they work really well and you can ask for support to make it work for you. Your hospital may also offer a free wig service. Ask your CNS for more details about cold caps and wig services. Read about Tracey's experience of using a cold cap during chemotherapy or hear Elda talk about her experience of the cold cap during her chemotherapy treatment:
Many people find that as treatment continues they become used to the side effects and can plan around them. If you're badly affected do get in touch with your hospital as they'll be able to help you.
Watch Karen's story to find out more about her chemotherapy experience and the support that she received during her treatment:
Radiotherapy is not generally used to treat ovarian cancer but is sometimes recommended for early-stage cancer after surgery to help kill off any cancer cells left behind. Your doctor will only suggest this if there are very small areas of cancer left in your pelvis and no sign of cancer in your abdomen.
Depending on individual circumstances such as the type of tumour, whether surgery is possible and where you live in the UK, you may be able to access other drugs. The way drugs are approved for use in the NHS differs across the UK which means there can be some differences in what drugs are available depending on where you live.
In England and Scotland a drug called bevacizumab (Avastin®) is currently available to some women with advanced ovarian cancer. Ask your oncologist whether you are eligible.
Drugs are sometimes reassessed to decide whether they should be available on the NHS. The information above is up to date as of October 2016. Contact us for the most up-to-date information.
It's common for people with cancer, particularly if the prognosis is challenging, to search for new treatments and 'miracle cures' and there are plenty available for a price.
If you're tempted to try a 'miracle cure' you find on the internet please discuss this with your doctor first. Unfortunately, not everyone has our best interests at heart. Some people just want to make money out of us at a time when we are particularly vulnerable.
Clinical trials are research studies that investigate potential new drugs, new ways of giving treatments or different types of treatments and compare them to the current standard treatments.
You will be looked after by a multi-disciplinary team (MDT). This team will involve all of the people caring for you. The MDT meets up regularly to discuss your care and treatment, review test results and recommend treatment plans.
Who's who in the team looking after you
The main hospital staff you will come across will be oncologists, a CNS and a chemotherapy nurse.
An oncologist is a doctor who specialises in cancer treatment. Depending on your treatment plan you will meet:
A gynaecological oncologist who's in charge of your operation or surgery – throughout our materials we use the term 'surgeon'.
A medical oncologist who organises chemotherapy or targeted treatments. Oncologists are sometimes referred to as clinical or medical oncologists but in our materials we refer to this person as an 'oncologist'.
Gynae-oncology clinical nurse specialist (CNS)
A CNS in gynae-oncology is a senior nurse who has had extra training to look after women with gynaecological cancers, such as ovarian cancer. In some areas you may be cared for by a gynaecology nurse or a Macmillan nurse. Your nurse should help you to navigate your way throughout the healthcare system from your diagnosis onwards. Your relationship with your nurse can transform your care.
Watch this video interview with Debbie Fitzgerald, a CNS, to get a better idea of how your CNS will support you:
Depending on your treatment plan, your chemotherapy nurse will help you through your chemotherapy treatment and any side effects you may experience.
Who should I speak to if I have questions or problems?
You should speak to the main person looking after your care and treatment. This person is known as your key worker and is usually a CNS. You should be given contact details for your key worker so you can get in touch with questions or problems.
You might want to use complementary therapies alongside your hospital treatments, to help you relax or to ease symptoms and side effects. Some complementary therapies are common, like massage and acupuncture, and some you may not have heard of before. All of these therapies can help improve your mood and deal with problems like sickness or pain.
None of these therapies should replace your actual treatment, but they may give you an extra boost. As cancer is a complex condition, it's important to use a registered therapist and always keep your clinical nurse specialist and oncologist aware.
Our expert mini guide can answer your questions about the use of complementary therapies after an ovarian cancer diagnosis, including what complementary therapies are, the difference between complementary and alternative therapies, and how and where you can find out more. Read 'Ovarian cancer and complementary therapies' [PDF] or order a copy online.
Most hospitals have links with a local cancer support centre, which might offer a range of therapies on site for free.
Therapy Directory connects you with a qualified therapist most suited to your needs. All the therapists on the website have shown proof of qualifications and/or membership with a professional body. They list many therapies from aromatherapy to reflexology.
This information is reviewed regularly and is in line with accepted national and international guidelines. All of our publications undergo an expert peer review and are reviewed by women with ovarian cancer to ensure that we provide accurate and high-quality information. To find out more take a look at our information standards.
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