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's available locally. Your personal preferences should also be taken into account.
Read about the different types of treatment for ovarian cancer and what you can expect.
You'll be looked after by a multi-disciplinary team (MDT). This team will involve all the people caring for you.
Who's who in the team looking after you
The main hospital staff you'll come across will be:
An oncologist is a doctor who specialises in treating cancer. Depending on your treatment plan you'll meet:
A gynaecological oncology surgeon who is in charge of your operation. They've had extra training to operate on people with ovarian cancer, womb cancer, cervical cancer, vulval cancer or vaginal cancer (gynaecological cancers). Often known as a ‘surgeon’.
This is a senior nurse who's had extra training to look after women with gynaecological cancers such as ovarian cancer. In some places CNSs are called specialist gynaecology nurses and in other places they're called Macmillan nurses. They might sometimes be called your key worker. Your CNS should be the person who's involved in every step of your care and treatment. They'll help you to find your way through the healthcare system, from the time that you're first diagnosed.
Watch this video interview with Debbie Fitzgerald, a CNS, to get a better idea of how your CNS will support you:
If you’re treated with chemotherapy, a team of chemotherapy nurses will help you through your treatment and any side effects that you experience.
Other health professionals
Other people who may be involved in the MDT are:
Radiologists (doctors who carry out and read scans like x-rays and CT scans)
Psychologists (specialists who help support mental health during a cancer diagnosis and beyond)
Pathologists (doctors who diagnose the cancer by looking at cells under a microscope in the laboratory)
Nutritionists or dietitians (specialists who give guidance on food and drink as fuel for the body)
Physiotherapists and occupational therapists (specialists who help people with movement and to cope with or everyday tasks that are difficult due to illness)
The MDT will meet up regularly to talk about your care and treatment, review test results and recommend treatment plans. It's important to remember that you should also be fully involved in decisions about your treatment plan.
Who should I speak to if I have questions or problems during treatment?
After your diagnosis you should be told who the main person looking after your care and treatment is. This person is known in most hospitals as your key worker. This is usually a gynae-oncology CNS.
You should be given contact details for your key worker so that you can get in touch with them with any questions or problems. It's important that you understand what's happening to you and why. If, for any reason, you're not sure who your key worker is, or how to contact them, ask a member of your medical team to write down the details for you.
Some women have detailed conversations about treatment choices, while others would rather ask their oncologist to recommend an option. You may find yourself caught up in a medical whirlwind, talking with your treatment team about what happens next. Take a moment to think about what you want and make sure you have the information you need to make any decisions or choices put to you.
It can be useful to share your thoughts about the following questions with your oncologist or CNS:
How much detail do you want to know?
When do you want this information?
How do you want to make your decisions?
Do you like to take some time to absorb information before deciding?
Do you need to talk it through with anyone before deciding?
What's the goal (intention) of the treatment?
Will this treatment cure the cancer?
Will the treatment control the cancer or control the symptoms?
Will you need more treatment in the future?
The key decisions
The treatment you have will be a joint decision between you and your treatment team. Key decisions about treatment options include where to have your treatment, when to have surgery, when to have chemotherapy and what type of chemotherapy or other drugs are best for you. Asking some of the following questions may help you decide what you want to do:
What treatment options are there for me?
What are the benefits of a particular treatment and how effective is it?
What are the risks involved in having the treatment now and in the long term?
What are the side effects of treatment: how might it affect me physically, emotionally and sexually?
How long are these side effects expected to last?
What might help me to reduce, control or recover from these side effects?
How is any treatment likely to affect my life and health in general?
Will I be able to go on holiday?
Can I continue to work?
If I stop working, when will I be able to return to work?
Where can I be treated?
Would a different specialist centre (a hospital or clinic with experts in ovarian cancer treatment) offer me other treatment options?
Can I take part in a clinical trial (a research project about ovarian cancer treatments or drugs) at this centre or any other centre?
Know that you can ask for help
Your CNS/key worker helps to make sure that your views are heard in conversations about your treatment, so let them know how you feel and what's affecting your decision-making. This may include things that are going on outside the hospital, at home or at work.
It might help to take a family member or friend to your appointments, if possible. Talk to them before your appointment about what you would like to know from the oncologist. If you find it difficult, they can ask your questions or write down the answers to questions you ask. This might help you remember what was said.
Having talked about treatment options with your oncologist or your surgeon, you may still not be sure what to do. If you’d like to get a second opinion it’s okay to ask. A second opinion is when you speak to another oncologist or surgeon about your diagnosis and treatment options. Your CNS, hospital doctor or GP should be able to let you know how to do this. Your hospital doctor should be happy to refer you (pass your notes onto another surgeon or oncologist in a different hospital).
Before your surgery
It’s useful to plan ahead before your surgery. For example, you might want to:
Make sure that there's plenty of food in the house so that you don’t need to worry about going to the shops.
Make sure that everything you might need in the house is stored so that it’s within easy reach (to avoid reaching and bending).
Think about sleeping in a different place to be closer to the bathroom while you recover.
Making some small changes can make your recovery easier.
At the hospital you’ll be examined (checked over) and given some tests to make sure you’re physically fit enough to have surgery. Your surgeon will explain what will happen during the operation. It's often difficult for the surgeon to know exactly how much surgery you'll need until they begin to operate, so they may discuss different possibilities and options with you. Surgery will also confirm the stage and grade of your cancer, which isn’t possible to do just through scans.
What will happen during your surgery
Surgery normally includes removal of:
The womb (uterus) and neck of the womb (cervix). This is known as a hysterectomy.
Both ovaries and fallopian tubes. This is known as a salpingo-oophorectomy.
The omentum (a sheet of fat that hangs within the tummy). This is known as an omentectomy.
If you’re a younger woman you may have additional concerns about the impact of surgery on your fertility and facing early menopause.
Depending on how far the cancer has spread, you may also have the following removed:
some enlarged lymph nodes (small structures that are part of your immune system, which help your body fight infection and disease)
parts of other organs that may be affected by the cancer
Some women need more surgery than this, sometimes called cytoreductive, debulking or ultra-radical surgery. This is to make sure as much of the cancer as possible is removed. It's when more tissue (a group of cells) is removed from other organs compared to standard surgery if it's found to have cancer in it. This may include parts of the:
peritoneum (a large, thin, flexible sheet of tissue that covers the organs inside your tummy)
occasionally it may be necessary to remove your spleen (an organ in the upper left side of your tummy that forms part of your immune system)
If surgery is needed on the bowel, most of the time the affected part of the bowel can be removed and the two ends put back together again (this is called an anastomosis). But sometimes this isn’t possible or safe and your body will need a new way for your faeces (poo) to be passed. In this situation, your surgeon will make an opening through your abdominal (tummy) wall and bring the end of the bowel through it. This is called the creation of a stoma or ostomy (an artificial opening).
After your surgery
Surgery puts your body through a lot of stress so it's important to allow time to heal and recover. In the first weeks after your surgery you should take things very gently and give yourself lots of time to rest. Listen to your body as you slowly increase your level of activity: it'll tell you how far you can go and what you can take on, depending on how you feel.
You'll be given blood thinning injections for 28 days after surgery as well as compression stockings to wear. These gently squeeze the legs and will help reduce the risk of blood clots in your legs and lungs. You can reduce this risk more by:
making sure you drink enough water (avoiding a lot of caffeinated drinks such as coffee, tea and cola).
going for short walks inside the house or outdoors.
wriggling your toes when you're sitting or lying down.
Many people are worried they'll be in pain after an operation. You'll be given medication to make sure you're as comfortable as possible.
It’s common to feel tired after your surgery as your body is working hard to recover. You may be extremely tired or fatigued and this can come on very suddenly. It’s important to build up activities gradually to help you through this.
If your surgery included 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 lymphoedema.
If you're concerned about any side effects, contact your CNS.
Chemotherapy is drugs given to kill cancer cells in your body. You may have chemotherapy treatment before or after surgery. You may have chemotherapy on its own without surgery, depending on how far the cancer has spread.
What chemotherapy will you have?
Your oncologist will decide with you which chemotherapy drugs you’ll have. Many people get a mixture of a platinum-based chemotherapy (usually carboplatin but sometimes cisplatin) and paclitaxel (most commonly called Taxol®). Sometimes carboplatin will be recommended on its own.
Chemotherapy is usually given over six sessions, with a three week gap between each session. This gap is to let your body recover from each session before the next one starts. Sometimes, if you're not very well or if you have a lot of side effects from the chemotherapy, your oncologist may give you your chemotherapy in a smaller dose every week.
What happens when you have chemotherapy treatment?
Most people have chemotherapy at their local hospital. At the hospital some blood samples will be taken for testing before each session (cycle) of chemotherapy. These are checks to make sure that it's safe to go ahead with your treatment.
When you have your treatment, you'll be shown into the treatment room where you'll be invited to settle yourself in a comfy chair. The nurse will place a cannula (a small tube like a needle) into one of the veins on your hand or arm and attach a drip so the drugs can get into your bloodstream. These drugs are given over a few hours. 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.
You may also have treatment through a tube (a PICC line, portacath or central line) in your chest. These are semi-permanent and stay in place for the course of your treatment.
You may feel more anxious about chemotherapy because of the number of blood tests that are needed or because it involves needles. If this is something that worries you, you can ask your nurse to put some anaesthetic cream (numbing cream) on your arm about half an hour before the blood test, as this will make it less uncomfortable.
You'll usually spend most of the day at the hospital so you might want to ask a relative or friend to keep you company, if allowed by your hospital. A couple of magazines or a good book or watching something on your phone or tablet can also help to pass the time.
Will you have any side effects?
Many women experience mild side effects but these can be easily treated. It's rare for side effects to be severe. The side effects don’t usually start straight away and most people are able to drive home from hospital.
One of the effects of chemotherapy is that it reduces the number of white blood cells in your blood and that means you might not be able to fight infections as well as before. This is why the hospital will want you to contact them immediately if you get a temperature or feel ill in the days or weeks after treatment. This can happen at any time, but your blood count is likely to be at its lowest seven to 14 days after your chemotherapy. You should avoid people who have infections (viral infection or infections treated with antibiotics).
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 people feel very tired during chemotherapy so it is 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 might be able to change your medication.
Tingling or numbness in your hands or feet – chemotherapy can affect your nerves, which may cause your feet or hands to tingle or feel numb. This is known as neuropathy. Complementary therapies [PDF] may help to ease symptoms.
'Chemo brain' or 'chemo fog' – this is when you can’t think as clearly after chemotherapy as you did before treatment and usually goes away after a while.
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 tummy.
Depending on your individual circumstances, such as the type of tumour and whether surgery is possible, you may be able to have other targeted drugs. The way drugs are approved for use in the NHS differs across the UK which means that there can be some differences in what drugs are available depending on where you live.
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're 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.
Therapy Directory connects you with a qualified therapist most suited to your needs. All the therapists on the website have shown proof of qualifications or membership with a professional body. They list many therapies from aromatherapy to reflexology.
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