These sections provide information about managing your symptoms and understanding your care. This includes understanding what’s being said and who will be looking after you, as well as what to expect from hospice and palliative care.
You might hear a variety of terms and words being used. These might mean different things to different people. Many of the words used aren’t ones we hear in everyday conversation. They may feel unfamiliar or uncomfortable to you when you read or hear them. We hope that by explaining some of these words we will make it easier for you to deal with conversations with the health professionals looking after you and with your loved ones.
It’s also important to understand exactly what the health professionals looking after you are saying. If you aren’t sure, or don’t understand the words they use, ask them to explain.
We use the word incurable to mean that the cancer is no longer curable. There may still be treatments that can help to:
reduce the cancer’s impact on you by relieving pain and other symptoms
slow down the cancer’s progression (when it grows or spreads in the body)
live as well as possible with cancer.
The health professionals looking after you may tell you that the cancer is incurable when you are first diagnosed with ovarian cancer. Or when the cancer comes back or spreads. You may also hear incurable cancer called treatable but not curable or advanced cancer.
You may hear other words to describe this phase of your treatment and care. They're words that can help all of us talk about living with an incurable illness.
Health professionals may use the terms palliative care, end of life care and hospice care. It can be worrying to hear these words. The aim with all these types of care is to keep and improve your quality of life while living with an incurable illness. These types of care can also offer support to you, your family and friends during your illness.
All these types of care focus on you and your concerns. These could be:
physical – how to manage symptoms or side effects, such as pain, breathlessness or sickness
emotional – how you feel and manage your feelings
spiritual – how you find meaning and make sense of the world
social – how you see yourself within your family or workplace.
Give yourself time to ask questions about these terms, now or in the future. While the cancer may not be curable, there are still many things that can help you live as well as possible.
My care, my future
A guide for anyone living with incurable ovarian cancer.
Depending on your situation, you may be looked after by your clinical team, a palliative care team or by both teams. If you are looked after by both teams, the health professionals in both teams will work closely together to care for you.
Your palliative care team
When you are referred to palliative care you will be looked after by a palliative care multi-disciplinary team (MDT). The main people you may come across are:
Palliative care consultant
A palliative care consultant is a senior doctor that leads the palliative care MDT. They recommend medications and treatments within the MDT and also to hospital doctors and GPs.
Palliative care clinical nurse specialist (CNS)
This is a nurse who has had extra training in palliative and end of life care. In some places they are called supportive and palliative care nurses.
Palliative care CNSs can work in the hospital, community, hospice or in a care home. They work with your gynae-oncology CNS, oncologist, GP, hospice and community nurses to give you the care that you need.
You may have access to one CNS or a team of CNSs depending on where you live in the UK. You may see them face-to-face or speak to them on the phone.
Some clinical teams and palliative care MDTs will also have a very senior nurse working with them called a nurse consultant.
GP
Your GP is your main contact for your medical care if you are living at home or in a care home. Your GP isn’t part of the palliative care MDT, but they will work closely with the health professionals in it.
Your GP will:
prescribe medications and help you to manage any symptoms
work with your district or community nurse, and your palliative care team to make sure you are getting the right care for you
refer you to community specialist palliative care or hospice services
they may also talk to you about advance care planning and record your wishes and decisions.
District or community nurse
A district or community nurse gives you care at home if you can’t leave your house for treatment. They will support you at home and refer you to any other health or care professionals that can help with your care. This type of nurse may also do a holistic needs assessment and put together a care plan with you.
End of life care nurses
This is a nurse with extra training in end of life care who looks after you at home in the last weeks of life. Nurses can be from the hospice, community team or the Marie Curie charity. In some places this type of care is called hospice care at home. You may hear end of life care nurses called Marie Curie nurses.
Other health professionals
Other people who may be involved in the clinical or palliative care MDT are:
advanced clinical practitioners (ACPs) – who diagnose conditions, make treatment plans, prescribe medications and refer you for more care or tests and work closely with your palliative care CNS
occupational therapists – who help you cope with daily tasks that are difficult because of illness. They may also assess you for specialist equipment at home
physiotherapists - who help you with movement and exercise
dietitians – who give you advice about what to eat and drink
psychologists or counsellors – who help your mental health when you are living with incurable cancer
social workers – who assess your care needs, arrange personal care support and support you to adapt your home or have meals delivered
care workers or healthcare assistants – who help you with your personal care such as washing, dressing and taking your medication
chaplaincy or spirituality teams – who support your religious or spiritual needs
pharmacists – who give out medication and can deliver it to your home if needed.
The clinical and palliative care MDTs meet up often to talk about the care and treatment of their patients. They review test results and talk about plans for treatment and care. Remember that you should also be fully involved in decisions about your treatment and care.
Controlling your symptoms
When you are living with incurable ovarian cancer you may have some uncomfortable or unfamiliar symptoms and side effects. They are different for everyone. Talk to your GP, CNS or another health professional caring for you about your symptoms. They can support you with symptom control.
We’ve listed some of the common symptoms that you might experience.
Fatigue
Fatigue isn’t just feeling tired but feeling exhausted most of the time. This may be due to conditions such as:
Anaemia, where you have low levels of healthy red blood cells. It might be helped by iron supplements or an iron infusion. You might also be offered a blood transfusion to help anaemia.
Low magnesium that might be helped by magnesium supplements or a magnesium infusion.
Treatments, such as chemotherapy or radiotherapy.
The cancer itself and the emotions you’re experiencing.
Gentle exercise can help with fatigue. Your CNS or GP should be able to tell you where you can join a fatigue programme. These can guide you through the right kind of activity as well as ideas on how to pace your life and cope with your changing energy levels.
You may need to adjust your lifestyle or change 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 as well as aids that will help you save your energy.
There are also medications that act as stimulants. These increase brain activity and may help your alertness and energy. Speak to your CNS or GP about what might help you.
Watch our recorded managing fatigue event, led by Mara Sheldon, Occupational Therapist:
Ascites
Ascites is when fluid collects in the abdominal cavity (tummy area) because of the cancer. It can cause:
swelling in your tummy
shortness of breath
indigestion
feeling or being sick
reduced appetite
fatigue.
You can have an ultrasound scan to confirm that any abdominal swelling is caused by ascites.
The ascites fluid can usually be easily drained using a procedure called paracentesis.
Paracentesis can often be done in a hospital or hospice without the need to stay overnight. You will have a local anaesthetic where medicine is used to numbs part of the body. A very thin, soft tube is put into the tummy. The tube will be connected to a bag. Ascites fluid will slowly flow into the bag over a few hours. The tube is then taken out. This drainage can be repeated if the fluid collects again. Your doctor will talk to you about the right time for you to have this procedure.
If the fluid collects again quickly, an indwelling drain may be a better option for you. This is a semi-permanent tube that means you can manage your ascites at home by draining small amounts of fluid on a more regular basis to avoid a build-up of fluid. It is also called a PleurX or Rocket drain.
Some people have loculated ascites. This is when the fluid collects in small pockets in the body and draining it might not be possible. If this happens, you will be given advice by your GP, CNS or palliative care team. If you’re finding this painful they will be able to give you painkillers to help.
Sometimes the risks of having ascites drained outweigh the benefits even if you have had it done before. For example, if you have low blood pressure. In this case, you will be given medicine to help you feel more comfortable rather than draining the ascites.
Loss of appetite
Losing your appetite can lead to weight loss and having less energy. It can help to:
Eat high-calorie snacks little and often to avoid feeling bloated.
Try nutritious supplement drinks which your GP or CNS can recommend.
Ask to see a dietitian who can advise on the best way to keep up your food intake when your appetite is small.
It's important to remember that your weight can go up and down throughout your illness if fluid builds up in your tummy (ascites). If there is a drastic change in your weight speak to the healthcare team looking after you.
If your appetite is really poor and you’re very tired, a short course of steroid tablets can be taken to increase your appetite and energy. Steroids can have side effects if used for too long so a short booster course is given. Usually you will also be given another medicine to stop you from getting indigestion.
Indigestion happens when stomach acid comes back up the gullet. This is the tube which food passes from the mouth to the stomach through. It's also called heartburn or reflux. It can feel painful or uncomfortable and can often cause a cough.
Indigestion can be caused by anxiety, steroids, anti-inflammatory drugs for example ibuprofen, ascites and oral thrush. Oral thrush is a fungal infection in the gullet or mouth. If it has been ruled out, you can help by:
trying 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
not drinking hot drinks or alcohol
not eating foods that are acidic or spicy.
If these changes don’t help, your GP or CNS can prescribe medicine to reduce your stomach acid.
Nausea (feeling sick) or vomiting (being sick)
Feeling and being sick can be caused by ascites, indigestion, constipation and medication such as strong painkillers, antibiotics, chemotherapy. It can lead to loss of appetite and weakness if not eased quickly. There are things that may help to ease nausea. You can:
eat small, light meals such as soups
eat cold food as this helps you to avoid cooking smells which can sometimes cause people to be feel sick
There are also many medications that help to reduce nausea and vomiting, depending on the cause. Speak to your CNS or GP about what might help you.
If you're vomiting often and you can’t keep food and drink down, it's important to tell your CNS or GP as soon as possible. You can quickly become dehydrated and quite unwell without treatment.
Shortness of breath
Shortness of breath has different causes and can be managed in different ways:
Ascites fluid can push up the diaphragm causing shortness of breath. The diaphragm is a muscle that separates the chest and abdomen. Shortness of breath can be eased by draining the fluid.
Anaemia can cause shortness of breath and can be helped by a blood transfusion. Sometimes an iron infusion can help.
Anxiety is closely linked to breathlessness. Deep breathing and relaxation can help. Pacing yourself, where you balance your activity with rest, can also help.
Sitting near a fan or an open window will also reduce the feeling of being breathless.
Your local hospice may have clinics to help with breathlessness. A low dose of morphine liquid or medicine for anxiety can help with your breathing and to feel calmer. These medicines are usually taken as a tablet via the mouth but can also be given as an injection.
Tell your GP or CNS if your breathing is getting worse. It's also important to contact your healthcare team if you have shortness of breath and a new cough or chest pain. This may be due to a chest infection, fluid around the lung or a blood clot. All these complications can be treated. But some, like blood clots, need to be treated quickly.
Lymphoedema
Lymphoedema is where there’s extra fluid in the tissues of your body. This happens with your lymphatic system is blocked.
If you are diagnosed with lymphoedema, you should be referred to a lymphoedema specialist practitioner.
Pain can happen in any area that the cancer affects. For mild pain you can try:
Paracetamol or ibuprofen. Check with your GP or CNS that you can take ibuprofen first.
A warm bath or a heat pack.
Relaxation techniques including specific movements or stretches.
For more severe pain, a stronger painkiller will be suggested such as morphine. You will need medication to avoid constipation and sickness with this type of pain relief. Strong painkillers come in a variety of ways. They can be given as:
a liquid medicine that you take via the mouth
a tablet that you take via the mouth
a painkilling patch, which is stuck onto your skin to release painkillers through your skin. It may be a good option for you if nausea is a problem
a syringe driver, a small battery-powered pump that gives medicine through a small tube or needle just under the skin. It also may be a good option if nausea is a problem.
You can discuss which option is best for you with your palliative care team, CNS or GP.
Constipation
Constipation is changes to how you poo, such as:
not opening your bowels (pooing) as often
a change in the consistency of your poo, for instance if it is hard
finding it hard to poo, for instance if you are straining or it is painful.
Constipation can be caused by the cancer narrowing your bowel, ascites or some medications. You can help reduce constipation by:
doing gentle exercise such as going for a short walk.
If these changes don’t help talk to your CNS, palliative care team or GP. They can give you laxatives, which is a medicine that encourages movement in the bowels to help you go to the toilet. The right dose of laxatives can help you poo more regularly but shouldn’t cause loss of control or explosive bowel actions.
If laxatives that you take by mouth don’t help, you may need other treatment. This can include:
suppositories, which is medicine that is pushed gently into the anus (bottom)
an enema, where fluid is put into the lower bowel through the bottom.
These may be given by yourself or by a nurse.
Bowel obstruction
If you have constipation along with nausea, vomiting, tummy pain or a swollen tummy it could mean that your bowel is blocked. This is called a bowel blockage or obstruction and means that the waste from digested food can’t get past the blockage. Your bowel may be partially or completely blocked. This can be caused by:
something on the inside of the bowel blocking it, such as cancer or poo
something pressing on the bowel from the outside, such as cancer or ascites fluid
irritation to the nerves of the bowels, which can cause the muscles to stop working.
If you have symptoms of a bowel blockage, contact your GP, CNS or healthcare team straight away.
Sometimes the blockage can be eased by resting the bowel. This means stopping eating and drinking until your bowel is working normally again. If you’re resting the bowel, you may need fluids through a drip to stop you getting dehydrated. This is when your body loses more fluids than it takes in. Your healthcare team will talk to you about how to make sure you don’t become dehydrated.
Sometimes giving steroids can help. If you have ascites pressing on the bowel, draining the fluid can help. Laxatives can also help if there’s poo blocking the bowel.
Your healthcare team can give you medicine to reduce any tummy pain or nausea you have from the blockage. These medicines may need to be given by injection or a syringe pump rather than by mouth to ensure they are absorbed properly.
A nasogastric tube may also be used to reduce nausea and vomiting. This is a temporary tube that’s inserted from the nose into the stomach and allows fluid to drain away. It’s easy to remove once the bowel starts working again.
Sometimes a bowel blockage can keep coming back. If this happens, it’s important to actively manage your bowels and reduce the likelihood of constipation and obstruction. You can do this by:
drinking lots of fluid
eating a soft, easily digestible diet. This is usually a low-residue, low fibre diet
taking the right laxatives to keep your poo soft and the bowel open.
If you have a bowel blockage you will often need to stay in a hospice or hospital to control the symptoms you’re having.
There may be surgical options to treat your bowel blockage. But sometimes there’s no easy way treat the blockage with surgery or medicines. This is called intestinal failure. If you’re well otherwise (up and about), but your bowel can’t be cleared, then there may be specialist options to help with nutrition. Your team may refer you to a specialist bowel centre to consider these options.
If the bowel blockage doesnt clear, you may be offered sugery. This is often a difficult decision and not taken lightly. If it isn't possble for the affected area of the bowel to be removed and put back together, your body will need a new way for poo to leave the body using an ostomy or a stoma (an artifical opening). Find out more about having a stoma.
Hospice and palliative care
Palliative care can be given from your diagnosis onwards. It can be given for months or years. It is sometimes called supportive care and you can have active cancer treatments at the same time as palliative care. The focus of palliative care is to help you live well with cancer. It also supports you to think ahead about what is important to you and plan the care and support you might need.
Hospice care is where you are given palliative and end of life care in a hospice building.
Watch our session on living with incurable ovarian cancer and accessing palliative care services, led by Adrienne Betteley, Strategic Advisor for End of Life Care at Macmillan.
What is palliative care?
Each area of the UK has a local hospice or specialist palliative care service. Palliative care can be given at any time in your illness. It’s run in the community, in hospitals and in care homes.
Palliative care teams see people based on their needs and symptoms, it’s not always because someone has a short life expectancy. A referral to a palliative care team or hospice is to give you extra support so that you can live as well as possible with the cancer. Several studies show that early referral to a hospice or palliative care team can help people feel well for longer.
You can ask for a referral to a specialist palliative care team or a hospice at any stage of your illness. Some palliative care teams accept referrals from patients so you may be able to refer yourself.
What is hospice care?
You might be worried about the idea of a hospice and think that they are only for people at the end of life. But hospices can be a great source of comfort and they offer a range of specialist services for all stages of cancer. Many people spend one or two weeks at a hospice to get extra symptom control before going home again. Symptom control is where any physical symptoms you have are assessed and eased or managed.
Hospice care values the whole experience of a person, as well as their family and friends. They don’t just treat physical symptoms, they will support your emotional and spiritual needs as well. Many hospices around the UK are independent charities that work closely with your local health services.
You may connect staying in a hospice with dying. Some people do choose to go to a hospice when they’re near death. But many people come in and out of the hospice. 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 visit, they often wish they had met the hospice team earlier.
What services do hospices and palliative care teams offer?
Hospice and palliative teams offer:
symptom management - by an experienced multi-professional team for symptoms such as pain, breathlessness and fatigue
advance care planning – support making decisions about the treatment or care you would or wouldn’t like in future
psychological support - to help support your emotional and mental health
physiotherapy and occupational therapy - to help you stay active and independent
complementary therapies – therapies to complement your medical treatment and care such as massage, acupuncture or reflexology
spiritual care – supporting you with your spiritual or religious customs and reflecting on your life
practical and financial advice – support for things like adapting your home, claiming benefits and accessing your pension.
Care is given free of charge by health professionals and experienced volunteers who have had extra training in palliative and end of life care.
Types of hospice care
Hospices offer inpatient care where you can stay overnight at the hospice for a short period of time if you need to. This could be for a few days to have treatments to help you manage your symptoms. Referrals are usually made by a health professional who knows you and the hospice will offer you a bed when it’s available.
Most hospices also offer outpatient care to people living with an incurable illness. For instance, you can visit for specific support once a week for a few hours.
Some hospices allow people to stay for respite care. This is a type of care that gives your family and friends who are caring for you a short break.
Can I have palliative or hospice care at home?
Most areas of the UK have palliative care and hospice teams who work in the community. Your GP, gynae-oncology CNS or hospital team can refer you to this team. The palliative care team will often have a palliative care consultant, a palliative care CNS and other health professionals to support you.
Your palliative care CNS will visit you at home to support you and help you to manage your illness. They can also support your loved ones. They may see you in an outpatient clinic if you’re well enough to attend. They will agree a plan of care with you. This will include how often they will visit you at home.
There are also schemes such as hospice at home where nurses give you care at home in the last weeks of life. Nurses can be from the hospice, community team or the Marie Curie charity.
Your GP or CNS may ask you where you want to spend your final days. This is an emotional and difficult conversation, but it is important to talk about. To make the best choices for you, it’s important to know what help is available in your area to support your wishes.
If the hospice or specialist palliative care team are seeing me, will my consultant and GP still stay in touch?
All the teams looking after you keep in close contact with each other. The hospice and palliative care teams then work with them to support you.
Your main contact depends on where you are being treated:
if you are having care in the community, it’s a GP
if you are being cared for in hospital, it’s a hospital consultant.
If you are only being cared for by the hospice team or by the specialist palliative care team, your hospital consultant and gynae-oncology CNS may hand over your care completely. But they will often stay in contact.
Your GP will also be able to talk to you about any extra practical support that may be available locally.
Complementary therapies
Cancer support centres and hospices may offer complementary therapies. These ‘complement’ the treatments you have in hospital. They are not alternative treatments for cancer. They can give someone a sense of wellbeing and relaxation.
Find out what your local cancer support centre and hospice offer and try different therapies to decide which one is best for you. A professionally qualified therapist can talk to you about what therapy options and what might suit you best. None of these therapies should be replace your medical treatment. It’s important to use a registered therapist and always let your healthcare team know.
Complementary therapies information sheet
More information about complementary therapies and how to access them.
We are PIF TICK accredited. That means you can trust that our information is based on the latest evidence, regularly updated and easy to follow. To learn more about our review process, take a look at our information standards.
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