These sections provide information about managing your symptoms, understanding your care, including understanding the terminology used and who will be looking after you, and hospice and palliative care.
Controlling your symptoms
People often want to know what symptoms to expect when they have cancer that is no longer responding to treatment. The symptoms that you experience will vary from person to person, but some might be uncomfortable.
One of the key people to support your individual needs will be a community palliative care nurse or hospice nurse, acting as part of the symptom control treatment team. Their goal is to help you feel as well as you possibly can through improving and maintaining your quality of life. You can request a referral to a palliative care or hospice nurse at any stage of your illness from your GP or hospital team, whenever you feel you might need some extra support.
The following are some common symptoms that women with ovarian cancer experience. We have also included some strategies to help you manage these.
Fatigue is not just a question of feeling quite tired but actually feeling exhausted most of the time. This may be due to a reversible cause such as anaemia (low levels of health red blood cells) or low magnesium, but is more often due to treatments (such as chemotherapy or radiotherapy) or most commonly the illness itself, as well as the draining emotions you are experiencing.
Although it may sound strange, a beneficial approach to managing fatigue is gentle exercise, and your clinical nurse specialist (CNS) should be able to direct you to a 'fatigue programme' that can guide you through the right kind of activity, as well as other ideas on how to adapt and cope with your changing energy levels.
Experiencing fatigue can mean you have to adjust your lifestyle or limit your activities, which can be frustrating. Be kind to yourself as you find a pace you can cope with. An occupational therapist can give you tips to help during this time as well as aids that will help you conserve your energy.
There are also certain medications that act as stimulants and may help your energy and alertness. You can speak to your CNS about what might help.
This is a collection of fluid in the abdominal cavity (tummy area) that is caused by the cancer and can result in abdominal swelling, shortness of breath, indigestion, feeling or being sick, reduced appetite and worsened fatigue. You can have an ultrasound scan to confirm that any abdominal swelling is caused by fluid (ascites) and this fluid can usually be easily drained using a procedure called paracentesis.
Paracentesis can often be done as a day case either in hospital or some hospices. It involves a local anaesthetic and insertion of a very thin soft tube into the abdomen. This tube will be connected to a bag into which the ascites fluid will slowly drain over a few hours – the tube is then removed. This drainage can be repeated if the fluid collects again. Your doctor will discuss with you the right time for you to have this procedure.
If the fluid is collecting again quickly, an indwelling drain may be a suitable option for you. This is a clever semi-permanent tube that enables you to manage your excess ascites at home. This means that you can drain small amounts of fluid on a more regular basis.
Some women have loculated ascites. This is when the fluid is sectioned off into small pockets of fluid and drainage might not be possible. You will be given advice if this occurs by your GP and CNS and if you are finding this painful then they will be able to help with painkillers.
Loss of appetite
This leads to weight loss and reduced energy. You can help by eating high-calorie snacks (smoothies are ideal) little and often to avoid feeling bloated. If eating is really difficult you can try nutritious supplement drinks which your GP or CNS can recommend. Try not to get obsessed with your weight as this can fluctuate throughout your illness with fluid retention (see ascites). If your appetite is really poor and you are very tired, a short course of steroids can be recommended to enhance your appetite and energy.
You can also ask to see a dietician who can advise on the best way to keep up your food intake when your appetite is small.
This is also known as heartburn or reflux and is due to the stomach acid coming back up the gullet (the tube which food passes from the mouth to the stomach). It can feel painful or uncomfortable and will often be the cause of a cough.
Indigestion can be caused by anxiety, steroids, anti-inflammatory drugs, ascites and oral thrush (a fungal infection in the gullet or mouth). If thrush has been ruled out, you can help by trialling over the counter antacids such as Gaviscon, eating little and often, ensuring your evening meal is more than two hours before going to bed, sitting upright when eating, and avoiding hot drinks, alcohol and foods that are acidic or spicy. If these measures do not work, your GP or palliative care nurse can prescribe medication to reduce stomach acid.
Nausea (feeling sick) and vomiting
These symptoms can be caused by ascites, indigestion, constipation and medication (strong pain killers, antibiotics, chemotherapy) and can lead to loss of appetite and weakness if not eased quickly. Eating small, easily digestible meals such as soups can help, as well as trying to avoid the smells of food. Acupuncture, aromatherapy, use of sea sickness bands and crunching ice can also reduce nausea, and there are many medications which help to alleviate these symptoms, depending on the cause. These are definitely worth trying, so speak to your CNS or GP about what might help you.
If you're vomiting frequently and unable to keep food and drink down it's really important to alert your CNS or GP as you can quickly become dehydrated and quite unwell without treatment.
Shortness of breath
Managing this symptom depends upon the cause of your breathing problems. For instance, it may be due to ascites fluid pushing up the diaphragm, which can be eased by draining the fluid, or anaemia (low red blood cell count) which can be helped by a transfusion.
Deep breathing, relaxation and pacing yourself can also help as anxiety and breathlessness are closely linked. Sitting near a fan or an open window will also reduce the sensation of feeling breathless. Your local hospice may have clinics to help with breathlessness. Low dose oral morphine syrup or medicine for anxiety will help with your breathing and you will feel calmer.
Tell your GP or CNS if your breathing is getting worse. It's also important to contact your medical team if your shortness of breath is associated with a new cough or chest pain as this may be due to a chest infection, fluid around the lung or a blood clot. All these complications can be treated.
This is an excess of fluid in body tissues caused by a blockage of the lymph system (which clears excess body fluid). In women with ovarian cancer this fluid is most likely to collect in your legs or possibly your pelvic area. Lymphoedema can cause swollen heavy legs, reduced mobility and changes in your appearance, which may be difficult to cope with.
Elevating your legs, gentle exercise, good skin care and eating a high protein diet (including lots of fish, meat, eggs and cheese) can help, and your CNS can give you practical advice on how best to cope. If the lymphoedema worsens you can be referred to a lymphoedema specialist practitioner who may suggest massage to help drainage, together with support stockings and bandages.
This can occur in any area affected by the cancer. For mild pain, you can try paracetamol, a warm bath, a heat pack or relaxation techniques including specific movements or stretches. If the pain becomes more severe you should monitor where it is in your body, when it occurs and whether anything makes the pain worse or better. This will help your clinical team prescribe the best pain relief. For more severe pain, a stronger pain killer will be suggested such as morphine. Make sure you have medication to avoid constipation and sickness with this type of medication. Strong painkillers come in a variety of ways and you can discuss the best one for you with your CNS or GP.
Many people are frightened of strong pain killers such as morphine or worry about becoming addicted or immune to the effectiveness of the drug. But the dosage can be adapted to manage your pain and can be increased or decreased – and there are no additional problems when morphine is used in the right dose for the pain. In the right dose, morphine is safe and really effective and being free of pain means you will have more energy and can do so much more.
This can mean different things to different people but essentially it's a reduction in how regularly you open your bowels, or a change in the consistency of your stool (ie the stool is hard, requires lots of straining or is painful to pass). Constipation can be caused by the cancer narrowing the bowel, ascites or some medications. Not drinking enough water, a poor diet and inactivity can also contribute to constipation. It's very important that you take an active role in managing your bowels with regular drinks, fruit and vegetables and gentle exercise such as a short walk.
Most importantly if you do become constipated and the above measures do not help, then you must seek advice from your CNS. Laxatives can be very effective in the right dose and should not cause loss of control or explosive bowel actions. If the oral route is not successful then suppositories or an enema (an injection of fluid or gas into the lower bowel by way of the rectum) administered by yourself or a nurse may be needed. The important message is to keep bowels moving and if they stop seek medical advice sooner rather than later.
If constipation develops and is associated with symptoms of nausea, vomiting, abdominal pain or a swollen abdomen this could indicate that the bowel is blocked. This can be caused by something on the inside of the bowel blocking it (eg cancer or faeces), something compressing it from the outside (eg cancer or ascites fluid) or irritation to the nerves of the bowels causing them to 'go on strike'.
Often the obstruction can be eased by resting the bowel, giving steroids, draining the ascites or using laxatives. Your palliative care or symptom control team will be able to explore medication to reduce any abdominal pain or nausea associated with the blockage. These medicines may need to be given by injection or a pump rather than by mouth to ensure they are absorbed properly. A nasogastric tube may also be used to alleviate nausea and vomiting. This is a tube that is inserted from the nose into the stomach and allows fluid to drain away. You can say no to this if you do not want one – it's easily removed once the bowel starts working again.
Sometimes the bowel can move in and out of obstruction. If this does occur, it's important to actively manage your bowels and reduce the likelihood of constipation and obstruction with lots of fluid and a soft, easily digestible diet and the right laxatives to keep the motion soft and the bowel open.
Sometimes going to a hospice or hospital can be really helpful to get this condition under control.
If your episode of bowel obstruction doesn't clear with these measures and there's a single clear blockage, you may be offered surgery to remove a part of the bowel. This is often a difficult decision and not taken lightly.
Read more about surgical options for bowel obstruction.
Controlling difficult symptoms is possible with the right palliative support and will really improve your quality of life, helping you to make the most of every moment.
Understanding your care
Understanding what is being said
You might hear a variety of terms and words being used, and these might mean different things to different people. Many of the words used are not ones that we hear regularly and you may feel uncomfortable reading them. We don't want to distress you, but instead hope that defining what we mean when we use these words will provide an opportunity to think and talk about some of the more difficult or less discussed things in life.
It's also important to understand and be clear with your doctor, nurse and the team looking after you, exactly what they mean with the words they use. If you aren't sure, or don't understand, ask.
We've used the word 'incurable' to mean that your cancer is not responding or is no longer responding to treatment that could cure you. At this stage there may still be cancer treatments that can help control your disease, slow down its progression, or reduce the impact it has on how you feel physically. However, during this time you may experience some uncomfortable symptoms and side effects. Be sure to discuss any concerns with your CNS and wider medical team as often they will be able to help.
You may be offered symptom control treatment (also called palliative care) to help manage or ease any symptoms you are experiencing.
Depending on your individual needs this might mean that both a gynae-oncology CNS and a palliative care CNS are involved in your care.
The word 'palliative' and occasionally the word 'terminal' may be used to describe this phase of your treatment, so try not to be alarmed if you hear these words. It's important to remember that people may live with an incurable, palliative or terminal illness for weeks, months or even years. Supportive and palliative care specialists see people according to their needs and symptoms, not because they necessarily only have a short life expectancy.
You might also hear the term 'end of life'. It's helpful to find out what your medical team mean if they use this phrase. Although it can sound frightening the main reason for using this term is to ensure people with cancer that cannot be cured are prioritised for the help and support they need.
Additionally, the terms 'hospice care' and 'palliative care' are used. It can be daunting to hear these words but they simply mean the holistic and total care of someone who is living with an advancing illness. The aim of palliative care is to maintain and improve your quality of life and offer support to you, your family and your friends during the course of your illness.
Hospice care and palliative care focus on you and your concerns. These could be physical, emotional, spiritual and social. It can be provided by a variety of people ranging from your GP and community nursing team or hospital team, to hospice and specialist palliative care teams, sometimes referred to as 'symptom control teams'.
It's important to give yourself time to ask questions about these terms, now or in the future, and remember that while your cancer may not be curable, there are still many things that can help you live well for as long as possible.
Who will be looking after you?
When you and your medical team understand that your cancer is incurable, you may be referred to a symptom control or specialist palliative care team. The intention of a referral to palliative care or a hospice is to provide additional support to your existing cancer treatment team to ensure you live as well as possible with your cancer, for as long as possible.
Several studies have shown that early referral to a hospice or palliative care team is very helpful in ensuring people feel better for longer.
You can also request a referral to palliative care or a hospice at any stage of your illness from your GP or hospital team, whenever you feel you might need some extra support. Your palliative care or hospice nurse will usually work in partnership with your existing CNS to provide you with the care that you need.
It's important to keep in mind that the care teams and support they provide might differ depending on where you live in the UK. Talk to your CNS about what additional support you can access in your area.
Hospice and palliative care
A lot of people are worried about the idea of a hospice and think they are only for people at the very end of life. In fact, they offer a range of supportive services for all stages of cancer both within and beyond the hospice building.
Many people are admitted to hospices for one to two weeks to get more intensive symptom control before returning home again.
It may also be daunting to hear the words 'palliative care', but this is simply the holistic and total care of someone who is living with an advancing illness. The aim of palliative care is to maintain and improve your quality of life and offer support to you, your family and your friends during the course of your illness.
Where can I get this care?
Every area will have a local hospice or specialist palliative care service that works in the community in hospitals and care homes. You may already have met a Macmillan, hospice or palliative care nurse who helped you with questions and worries during your treatment, but if you haven't, you can ask to be referred to your local team by your doctor, nurse or another healthcare professional. In many areas you can now also refer yourself whenever you feel you might need some extra support.
What is hospice care?
Hospice care values the whole (holistic) experience of a woman, and their family and friends – mind, body and spirit. There are many hospices around the UK and they are mainly independent charitable organisations working closely with your local health services.
Most hospices offer clinics with various professionals and day services where you can visit perhaps once per week, for a few hours. They also offer inpatient care where you can stay for a short period of time if you need to. It might be a good idea to find out what your local hospice offers even if you don't feel ready, or wish to use the services yet. Find your local hospice.
What services do hospices and palliative care teams offer?
Specific services vary but all hospice teams will offer care such as pain and symptom control, advance or future care planning, psychological and social support. They will help you stay active and independent with physiotherapy and occupational therapy, arranging complementary therapies (such as massage, acupuncture or reflexology), spiritual care, practical and financial advice, and support in coming to terms with your future. They are often involved with education, training and research programmes. The services are usually provided by a variety of staff from highly trained professionals to experienced volunteers. All their care is provided free of charge and they may also be able to arrange transport for you to attend.
What is a hospice admission?
A hospice admission is when you may stay in the hospice for a few days for a variety of reasons. People often associate hospice admissions with dying, and of course some people choose to go to a hospice when they are near death, but many people come in and out of the hospice to receive treatments such as blood transfusions, to help manage their symptoms or to give those who are caring for them a short break. Hospices are often beautiful buildings, with light airy rooms and lovely gardens. Many people are frightened of the idea of hospice care, but once they have experienced it they regret not meeting the team earlier.
Can I have palliative or hospice care at home?
Most areas have palliative care and hospice teams who work in the community. Your GP or clinical nurse nurse specialist (CNS) will be able to refer you to this team, which often will have a palliative care medical consultant, a palliative CNS and other professionals to support you. The palliative CNS will come and visit you at home to support you and help you manage your illness as well as provide support to your loved ones. They may see you in an outpatient clinic if you are well enough to attend.
There are also schemes such as Hospice at Home, where nurses from the hospice, community team or Marie Curie offer hands-on nursing care at home, particularly in the last weeks of life. Marie Curie nurses work nationwide and Hospice at Home services are now available in many areas.
If I get involved with the palliative care team or the hospice, will my consultant and GP be informed?
Yes, all the teams keep in close contact with each other. Your GP and hospital consultant's team remain your key contacts with the hospice and palliative care teams working in partnership with them. Your GP will also be able to talk to you about any additional practical support that may be available locally through social services. These vary from place to place, so ask your GP what help is available in your area.
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 CNS 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.
- Most hospitals have links with a local cancer support centre that might offer a range of therapies on site for free.
- Cancer Research UK has detailed information about each therapy on its website.
- 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.