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Sarah-story

Sarah's story

"I just could not believe, in this day and age, that there was nothing anyone could do to help me. There had to be something. I wasn't going down without a fight."

We offer advice on managing terminal ovarian cancer, including treatment, care planning and symptom control. 

Care planning

If you have been given the news that you will no longer have active treatment, or have made that choice yourself, you are entitled to the best possible care to manage your cancer.

Your Clinical Nurse Specialist (CNS) may continue to provide your nursing care if they are qualified in palliative care. 

Many women will be transferred to another team.

Specialist palliative care will help you stay as comfortable and symptom free as possible. If you feel you are not receiving this care, you or your family/partner can ask who the Palliative Care Specialist is in your area and be referred.

You should receive a care plan. Again, ask if you haven’t – a care plan is crucial in helping you get what you want at this time. You may want to input your thoughts at this stage, or be happy to follow your medical team's advice.

Read more practical advice on advance care planning and thinking about the future.

Where can I get treatment and care?

Palliative care is the holistic and total care of someone who is living with a life limiting condition or approaching the end of their life. It aims to maintain and improve the quality of your life and offer support to you, your family and any carers during the course of the illness.

Every area has a local hospice or palliative care service, working in the community, hospitals and care homes.

You may already have met a Macmillan or palliative care nurse who helped you with questions and worries during your treatment. If you haven’t, you can ask to be referred to your local service by your doctor, nurse or another healthcare professional.

The services vary from location to location but most offer care such as pain and symptom control, advance or future care planning, psychological and social support, rehabilitation (helping patients to stay active and independent), arranging complementary therapies, spiritual care, practical and financial advice, and support in coming to terms with the life limiting aspect of your ovarian cancer.

All the care is provided free of charge and they may also be able to arrange transport for you to attend appointments.

Community palliative care

Some areas have a palliative care team who work in the community, perhaps alongside or instead of a hospice.

Your GP or hospital based CNS will be able to refer you to this team which will have a palliative care consultant or senior doctor, a CNS and other professionals to support you.

The CNS will come and visit you at home and help you manage your illness, as well as provide support to your loved ones.

Hospice 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.

However, a hospice team can be involved very early on. They can be an invaluable source of information, support and respite for you and your loved ones. You may have contact with them on many occasions, particularly if you need help with pain relief or other symptoms.

Hospices are mainly independent charitable organisations working closely with your local health services. Most offer:

  • outpatient clinics with various professionals
  • day services where you can visit perhaps once a week, for a few hours.
  • inpatient care where you can stay for a short period

It might be a good idea to find out what your local hospice offers even if you don’t feel ready to use the services yet. Visit Help the Hospices to find out more.

Complementary therapies

These therapies can be really helpful to enable you to relax and let go of tension.

Women use treatments such as acupuncture, massage or reflexology to reduce anxiety and get a sense of wellbeing.

Therapies are carried out by trained practitioners alongside conventional medical treatments. You should be able to access free complementary therapies at your local hospice or cancer support centre.

How will I control my symptoms?

People often want to know what symptoms to expect when they have life limiting cancer, and are particularly concerned about being in pain or short of breath. We have included some strategies to help you manage these symptoms and others.

Symptoms will vary from person to person. The aim of symptom control is to help you feel as well as you possibly can, while living with life limiting cancer.

Women with ovarian cancer sometimes experience:

Fatigue

You may need to limit your activities, which is likely to be frustrating. In time, with help from family, friends and professionals, you will adjust to this new pace. You will find ways to conserve your energy but still get enjoyment from life.

Fatigue may be due to treatments such as chemotherapy or to the illness itself. There may be a treatable cause, such as anaemia, which might be helped by a blood transfusion, but often there is no specific cause.

Modern approaches to dealing with fatigue include gentle exercise, and many hospices have fatigue programmes to give you new ideas on how to cope.

Abdominal ascites

This is a collection of fluid in the abdominal cavity.

It can cause abdominal swelling, shortness of breath, indigestion, feeling or being sick, reduced appetite and extreme tiredness (lethargy).

Some women feel very self-conscious about this symptom and worry about their body image.

An ultrasound test will confirm if fluid is present and this can usually be easily drained in hospital or at some hospices, often as a day case.

The most common treatment is a one-off procedure called paracentesis.

Following an injection of a local anaesthetic, a small cut (approximately 0.5 cm) will be made in your abdomen and a narrow tube inserted. You might have a secure dressing or a couple of stitches to hold the tube in place. The tube will be connected to a bottle or bag into which the ascites fluid will slowly drain. You will be monitored during the procedure.

Once drainage is complete, the tube will be removed. This drainage can be repeated if the fluid collects again and sometimes medication can slow down the further production of fluid.

The PleurX® catheter system is a safe, simple and effective longer term alternative for women who want to avoid regular hospital visits and manage their ascites at home.

A small flexible tube is inserted under the skin of the abdomen. One end of the tube remains outside of the body, but can be discreetly hidden under clothes. The tube is connected to a collection bottle, and ascites fluid drained into it.  You can quickly drain small volumes of fluid on a regular basis, which helps to reduce the build-up of fluid and the impact of symptoms.

PleurX® was recently approved for use by the NHS in England and Wales by the National Institute of Health and Clinical Excellence (NICE). Check with your CNS to find out if it is suitable for you and if you can access PleurX® in your area.

Loss of appetite

This leads to weight loss and reduced energy.

  • Try eating nutritious snacks little and often to avoid feeling bloated. Smoothies are ideal.
  • If eating is really difficult, ask your GP or nurse about nutritious supplement drinks.
  • Try not to get obsessed by your weight, as this can fluctuate throughout your illness with fluid retention (see ascites, above).

If your appetite is really poor and you are very tired, a short course of steroids may be recommended to enhance your appetite and energy. Steroids can have side effects if used for too long so a short booster course is advised, with medication to protect you from indigestion.

Indigestion

This can cause pain and discomfort in the gullet from reflux of stomach acid, caused by anxiety, steroids and anti-inflammatory drugs, such as ibuprofen, or thrush (a fungal infection).

  • Eat little and often, sitting upright and avoiding foods that are too acidic or spicy.
  • Your GP or palliative care nurse can prescribe medication to reduce stomach acid and treat thrush.

Nausea (feeling sick) and vomiting

These are troublesome symptoms and lead to loss of appetite and weakness if not helped quickly. Nausea can be caused by ascites, indigestion, constipation and medications, such as pain killers.

  • Try to relax and avoid the sight and smell of food in between meals.
  • Try medications that help nausea, depending on the cause.
  • Eat frequent, small, easily digestible meals such as soups.
  • Crunching ice can help.

If you are repeatedly vomiting, it is important to alert your GP or nurse, as you can quickly become dehydrated without treatment.

Shortness of breath

Management depends on 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 caused by anaemia, which can be helped by transfusion.

  • Deep breathing, relaxation and pacing yourself can help, as anxiety and breathlessness are closely linked.
  • Sitting near a fan or an open window will reduce the sensation of feeling breathless.
  • Low dose oral morphine syrup or medicine for anxiety will make you feel calmer and help your breathing.

Your local hospice may have clinics to help with breathlessness. Tell your doctor or palliative care nurse if your breathing is getting worse.

Lymphoedema

This is an excess of fluid in body tissues caused by poor lymph node drainage. In ovarian cancer this fluid is most likely to collect in your legs or possibly your pelvic area.

Lymphoedema causes swollen heavy legs, reduced mobility and difficult changes in your appearance. Your palliative care nurse can give practical advice, such as:

  • elevating your legs
  • gentle exercise
  • good skin care
  • a high protein diet (fish, meat, eggs and cheese)

If the lymphoedema worsens, you can be referred to a lymphoedema specialist practitioner who may suggest massage to help drainage, together with support hosiery and bandages.

Pain

This can occur in any area affected by the cancer, or may be indirectly linked (for example, lower back pain from abdominal pressure caused by ascites). For mild pain try:

  • paracetamol
  • a warm bath
  • a heated wheat bag
  • relaxation techniques

If pain becomes more severe, you should monitor where the pain is, when it occurs, and whether anything makes the pain worse or better.

This will help your doctor prescribe the best pain relief. For more severe pain, a stronger painkiller will be suggested (for example codeine or morphine) but make sure you have medication to avoid constipation and sickness with this type of medication.

Strong pain killers, such as morphine, can be started by mouth but other options (for example, fentanyl) can be used as a patch on the skin.

Sometimes, a battery operated pump (a syringe driver) can be used, especially if you are being sick.

Many people are frightened of strong painkillers, such as morphine, or worry about becoming immune to the effectiveness of the drug. The dosage can be adapted to manage your pain, and be increased or decreased – so you do not need to worry about ‘saving’ the option.

In the right dose, morphine is safe and effective, and being free of pain means you can do so much more.

Constipation/sluggish bowel

This can be caused by the cancer narrowing the bowel, ascites or certain medications, such as codeine or morphine.

Not drinking enough water, a poor diet and inactivity can also contribute to constipation.

It is important to take an active role in managing your bowels with:

  • regular drinks
  • fruit and vegetables
  • exercise, such as a short walk

Most importantly, if you do become constipated (for example, if your bowels do not open for more than three days, if your normal routine is daily) then get advice from your nurse.

Laxatives can be very effective in the right dose. If the oral route is not successful then suppositories or an enema administered by a nurse may be needed.

Keep your bowels moving and, if they stop, seek medical advice sooner rather than later.

Bowel obstruction

If constipation develops and you have nausea, vomiting, abdominal pain, and a swollen abdomen, this could indicate that the bowel is obstructed.

This can be caused by the cancer blocking a narrowed section of the bowel, or ascitic fluid pressing on the bowel, or hard impacted faeces blocking the bowel.

Sometimes the obstruction can be eased, for example by drainage of ascites or laxatives.

Ask your palliative care team about medication to reduce abdominal pain and nausea. Medicines may need to be given by injection or in a pump (syringe driver) rather than by mouth to ensure maximum effect.

A nasogastric tube can 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.

If the blockage is more permanent and doesn’t clear with medication, you may need further surgery if you are well enough. This is often a difficult decision.

Sometimes the bowel can move in and out of obstruction. If this happens, it is 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 into the hospice or hospital can be really helpful to get this condition under control.

Controlling difficult symptoms is possible with the right palliative support and will really improve your life, helping you to make the most of every moment.

Bowel obstruction and surgical options in life limiting ovarian cancer

The following paragraphs give more detail about bowel obstruction and the way a surgeon will alleviate this problem. Not everyone will want to read these details. We have kept this as simple as possible. If you have questions, please speak to your medical team; everyone is different and your team know the opportunities and challenges for managing your ovarian cancer.

Bowel obstruction – the surgeon’s perspective

Bowel obstruction is a common complication for women with life limiting ovarian cancer.

If the blockage cannot be removed, and the site is in the large or small bowel then a bypass operation may be needed to minimise potential symptoms, such as pain or vomiting.

Most often a loop or segment of the bowel is brought out onto the skin, through an opening called a stoma. The bowel contents then empty into a stoma bag, instead of trying to get past the obstruction. This procedure is called a colostomy.

If the obstruction is high up in the small bowel, this can be more problematic because the small bowel is important for absorbing nutrients and fluid.

If the small bowel is bypassed by a stoma, your doctor might recommend you receive nutrients and hydration through a tube.

A tube is inserted through the tummy directly into the small bowel, lower than the site of obstruction so that nutritious liquids or medicines can go through the tube and be absorbed. This is called a jejunostomy.

After removing or dealing with the bowel obstruction, your medical oncology team may consider chemotherapy, if the tumour is still responding to treatment.

Find out more

 

Looking-after-meThis content is primarily taken from our guide, Looking after me

Our expert guide aims to help you get the most from every day, while living with life limiting ovarian cancer. It offers insights into looking after yourself, understanding symptoms you may have, your relationships with others, and more.

 

 

Target Ovarian Cancer is an accredited member of the Information Standard Scheme. The information on this page has been developed following the schemes core principles.

the-information-standard

Last reviewed: January 2015
Next review: January 2017