Managing symptoms

It is common to feel tired during and after treatment, and to lack energy for day-to-day activities. Fatigue for people with cancer is different from tiredness, as it may not go away with rest or sleep. You may lose interest in things that you usually enjoy doing or feel unable to concentrate for very long.

If fatigue is a problem, talk to your treatment team. Sometimes fatigue can be caused by a low red blood cell count (anaemia) or the side effects of drugs, and can be treated. While you cannot always get rid of fatigue, you can find ways to improve your energy levels.

Tips for managing fatigue

Set small, manageable goals for the day, and rest before you get too tired.

• Ask for and accept offers of help with tasks such as shopping, cleaning and gardening.
• Plan breaks throughout the day when you are completely still for a while. An eye pillow can help at these times.
• Say no to things you really don’t feel like doing.
• Leave plenty of time to get to appointments.
• Sit down whenever you can.
• Ask your doctor what sort of exercise would be suitable. Even a walk around the garden or block can boost your energy levels.
• Eat nutritious food to keep your energy levels up.
• Consider acupuncture – some find it helps with fatigue.

Download our fact sheet ‘Fatigue and Cancer’

Shortness of breath, also called breathlessness or dyspnoea, is the most common symptom of pleural mesothelioma. This is often caused by a build-up of fluid in the pleural cavity known as a pleural effusion. The fluid can put pressure on the lung, making it harder to breathe.

In the earlier stages of pleural mesothelioma, controlling this fluid build-up will improve breathlessness. The level of improvement will depend on the health of your lungs before diagnosis, and how well they function after surgery. You may also feel breathless because of the cancer itself not allowing the lung to work properly (trapped lung).

In peritoneal mesothelioma, a build-up of fluid (ascites) can cause the abdomen to swell. This can be painful, but also puts pressure on the diaphragm and can make you feel breathless.

Other problems such as infection or a low level of red blood cells (anaemia) can also cause breathlessness.

Although living with breathlessness can be difficult, there are ways to reduce its impact on your life and manage the condition at home.

Ways to drain fluid around the lungs or abdomen

Fluid build-up around the lungs or abdomen may be drained before mesothelioma is diagnosed or at the same time as the biopsy.

Pleural tap – In pleural mesothelioma, a pleural tap (also known as pleurocentesis or thoracentesis) drains fluid from around the lungs. Your doctor will numb the area with a local anaesthetic and insert a needle between your ribs into the pleural cavity. An ultrasound scan may guide the needle to the fluid. The needle is connected to a bag for the fluid to drain into. This may take about 30–60 minutes. You usually don’t have to stay overnight after a pleural tap.

Peritoneal tap – In peritoneal mesothelioma, a peritoneal tap (also known as paracentesis) drains fluid from the abdomen. Your doctor will numb the area with a local anaesthetic into the abdomen and insert a needle through the skin into the peritoneal cavity. An ultrasound may guide the needle to the fluid. The needle is connected to a bag for the fluid to drain into. It takes a few hours for all the fluid to collect into a drainage bag. A peritoneal tap may be done while you are still having tests. You usually don’t have to stay overnight after a peritoneal tap.

Ways to control fluid around the lungs

Talc pleurodesis – To prevent fluid building up again in the lining of the lungs, you may have a talc pleurodesis. Pleurodesis means closing the pleural cavity.

Sterile talcum powder (talc slurry) is inserted into the pleural cavity, and the talc slurry causes an inflammation that helps fuse the two layers of the pleura together and closes the space. A talc pleurodesis is best done during VATS by a cardiothoracic surgeon, but is sometimes done by a respiratory physician.

After a talc pleurodesis, some people experience a burning pain in the chest for 24–48 hours. This pain can be eased with medicine and you will be able to have physiotherapy to improve lung expansion.

VATS with pleurectomy decortication – When fluid is drained and talc pleurodesis is done during VATS, part or all of the outer layer of the pleura (parietal pleura) is removed. This is known as pleurectomy decortication or PD. This may be done when the parietal pleura, which lines the chest wall, has become thick and inelastic.

Open surgery (thoracotomy) with pleurectomy decortication – Even after VATS and talc pleurodesis, the fluid may build-up around the lungs again, causing breathlessness. The surgeon may suggest more extensive surgery called thoracotomy with pleurectomy decortication (PD). This surgery may also be recommended as a first option if the cancer has grown in a way that makes it difficult to perform VATS successfully.

A thoracotomy helps to prevent fluid building up again in most cases. It also makes it easier for the lungs to expand and to transfer oxygen to the blood.

Pain can last longer than after VATS, but the improvement in symptoms may make open surgery a worthwhile option if VATS has been unsuccessful or isn’t possible.

Indwelling pleural catheter – Some people cannot have VATS or open surgery, either because they are too unwell or because the cancer has grown in a way that makes the surgery too difficult. Instead, you may be offered an indwelling pleural catheter (also known as a drain) to remove the fluid and improve your breathing. This can also be used if the pleural fluid builds up again after pleurodesis.

Under local anaesthetic, the specialist inserts a thin tube (the catheter) through the chest wall into the pleural cavity. You can manage the drain at home with the help of a community nurse, family member or friend. When the fluid builds up and needs to be drained (usually once or twice a week), the end of the catheter is connected to a bottle.

Sometimes with an indwelling pleural catheter, the pleural cavity may close up over time and stop producing fluid. If this occurs, the drain will be removed.

Ways to control fluid in the abdomen

Indwelling peritoneal catheter – If fluid keeps building up around the abdomen, a small tube can be inserted to allow fluid to flow into a bottle. This is known as an indwelling peritoneal catheter or drain and is managed similarly to an indwelling pleural catheter.

Heated chemotherapy – To control ascites, your doctor may suggest a single dose of heated chemotherapy directly into the abdomen. This can be given during laparoscopy, and there is some evidence that it can help prevent fluid building up again.

Improving breathlessness at home

It can be distressing to feel short of breath, but a range of simple strategies and treatments can provide some relief at home.

Create a breeze – Use a handheld fan to direct a cool stream of air across your face if you experience breathlessness when you are not exerting yourself.

Treat other conditions – Let your doctor know if you feel breathless. Other conditions, such as anaemia or a lung infection, may also make you feel short of breath, and these can often be treated.

Ask about medicines – Talk to your doctor about medicines, such as a low dose of morphine, to manage feelings of distress. Make sure your chest pain is well controlled as pain may stop you breathing deeply.

Sleep in a chair- Use a recliner chair to help you sleep in a more upright position.

Relax on a pillow – Lean forward on a table with an arm crossed over a pillow to allow your breathing muscles to relax.

Modify your movement – Some types of gentle exercise can help, but check with your doctor first. A physiotherapist, exercise physiologist and/or occupational therapist from your treatment centre can explain how to modify your activities to improve breathlessness.

Check if equipment could help – Ask your health care team about equipment to manage breathlessness. You may be able to use an oxygen concentrator at home to deliver oxygen to your lungs. For social outings and medical appointments, you can use a portable oxygen cylinder. If you have a cough or wheeze, you may benefit from a nebuliser, a device that delivers medicine into your lungs.

Find ways to relax – Listen to a relaxation recording or learn other ways to relax. This can allow you to control anxiety and breathe more easily. Cancer Council SA offers free relaxation and meditation CDs. Call Cancer Council 13 11 20 to order.

Many people are naturally worried about being in pain. It’s important to tell your treatment team if you are in pain. Pain may be a symptom of mesothelioma, but can also be a side effect of treatment.

The pain caused by the mesothelioma itself is usually dull and generalised – it can be difficult to say exactly where it is coming from. If the cancer spreads and presses on bones or other organs, it may feel sharp and stabbing. A sharp pain in the chest can also be caused by a blood clot in the lungs (pulmonary embolism), so seek urgent medical attention if the pain is new. Chemotherapy or surgery can injure nerves and cause pain or numbness.

There are several different ways to control pain:

Pain medicines – Different types and strengths of pain medicines
may be used:

• mild, like paracetamol
• moderate, like codeine
• strong and opioid-based, like morphine.

Pain-relieving drugs may be taken as tablets, oral liquids, patches, injections or intravenous infusions. Other drugs may also be prescribed, like    non-steroidal anti-inflammatory drugs (NSAIDs) or drugs specifically for nerve pain. Many people need a combination of medicines to achieve good pain control.

Opioids, such as morphine or oxycodone, are the most common drugs used to control moderate to severe mesothelioma pain.

Morphine is available in quick-acting and long-acting forms. Some people feel concerned that they might become addicted to morphine. However, pain specialists believe that this won’t happen if you take it as prescribed by your doctor to relieve pain. Morphine can be taken for a long time and in increasing doses, if needed. It doesn’t have to be kept for “when the pain gets really bad”. There are now many strong pain medicines that are similar to morphine, so if one does not agree with you, ask your doctor about trying other options.

Coping with pain

• Keep track of your pain in a symptom diary and try to describe it – what the pain feels like, how intense it is, exactly where it is, where it comes from and travels to, how long it lasts, and if it goes away with a specific pain medicine or with any other therapy, such as a heat pack.
• Allow a few days for your body to adjust to the dose of pain medicine and for any drowsiness to improve.
• Let your doctor know if you have vivid dreams, nausea or other side effects after taking a strong pain medicine such as morphine or oxycodone. Adjusting the dose may help, or you can try other methods of pain relief.
• Ask your doctor if you need a laxative or stool softener prescribed to prevent or relieve constipation caused by pain medicines.
• Take pain medicine regularly as prescribed, even when you’re not in pain. It’s better to stay on top of the pain.
• Ask your doctors to regularly review your pain management plan.

A small number of people have difficulty controlling their pain and a pain management specialist may need to consider several different medicines to find a suitable combination.

Procedures to manage fluid build-up – Aside from breathlessness, fluid build-up around the lungs or abdomen can cause pain. Various treatments can help drain the fluid and try to prevent it building up again.

Radiation therapy – This may be used to shrink mesothelioma that is pressing on nerves, bones or major blood vessels and causing pain. Sometimes the mesothelioma can grow through the scar from VATS surgery and produce a lump in the skin. Radiation therapy can reduce the size of the lump and ease any associated pain.

Chemotherapy – This can reduce the size of the mesothelioma that is causing the pain.

Debulking surgery – If you are well enough and it is technically possible, surgery may be used to remove the part of the mesothelioma causing pain and other symptoms. This is known as debulking surgery. Talk to your doctor for more information.

Download our booklet ‘Understanding Cancer Pain’

Getting a good night’s sleep is important for maintaining your energy levels, reducing fatigue, and improving mood. Difficulty sleeping may be caused by pain, breathlessness, anxiety or depression. Some medicines can also disrupt sleep. If you already had sleep problems before the mesothelioma diagnosis, these can become worse.

Talk to your doctor about what might be helpful for you. Your medicines may need adjusting or you may need medicines to help you sleep.

Getting a better night’s sleep

• Try to do some gentle physical activity every day. This will help you sleep better. Talk to a physiotherapist or exercise physiologist, who can tailor an exercise program, and an occupational therapist, who can suggest equipment to help you move safely.
• Limit or cut out the use of alcohol, caffeine, nicotine and spicy food.
• Avoid using technology, such as television, computers or smartphones, before bed, as the light tells your body it’s time to wake up.
• Follow a regular routine before bed and set up a calm sleeping environment. Ensure the room is dark, quiet and a cool temperature.
• Try listening to soothing music, a recording of rain sounds, or a relaxation recording.

Listen to our ‘Sleep and Cancer’ podcast

Some people have little interest in eating and lose weight even before mesothelioma is diagnosed. These symptoms may be caused by the disease itself, or by nausea, trouble swallowing, changes in taste or smell, breathlessness, abdominal pain, or feeling down.

Eating well will help you cope better with day-to-day living, treatment and side effects, and improve your quality of life. A palliative care specialist can help manage symptoms that affect your appetite or ability to eat. You may also find it useful to talk to a dietitian who is experienced in treating people with cancer. They can provide helpful eating suggestions.

Eating when you have little appetite

• Have small meals and snacks regularly. A large, full plate may put you off eating – try using a smaller plate with smaller portions. Likewise, drink from a half-full glass.
• Eat moist food such as scrambled eggs. Moist food tends to be easier to eat and will cause less irritation if you have a sore mouth.
• Avoid fatty or sugary foods if these make you feel sick.
• Use lemon juice and herbs to add flavour to bland food.
• Eat more of your favourite foods – follow your cravings.
• If solid food doesn’t appeal, ask a dietitian about protein drinks or other supplements.

Download our booklet ‘Nutrition for People Living with Cancer’

Having infrequent or difficult-to-pass bowel motions is known as constipation. Common causes include lack of exercise, eating less fibre, or not drinking enough fluids. Opioid medicines, some anti-nausea medicines and some chemotherapy drugs also cause constipation.

Severe constipation plus abdominal pain, bloating, nausea and vomiting may be signs of a blockage in the bowel (bowel obstruction). This occasionally happens with peritoneal mesothelioma, but rarely with pleural mesothelioma. To relieve the symptoms, you may have a small tube (stent) put in to help keep the bowel open. If the bowel is completely blocked, it needs to be cleared with emergency surgery.

Managing constipation

• Drink plenty of fluids.
• Eat fresh fruit and vegetables and fibre-rich foods (e.g. prunes), unless your doctor advises otherwise.
• Try to be physically active every day. Talk to your doctor or physiotherapist to find the exercise that is right for you.
• Ask your doctor how to manage constipation. You may be prescribed medicines to help control symptoms.
• Try over-the-counter laxatives such as Coloxyl with senna, Duphalac or Movicol, but check the dose with the pharmacist and let your doctor know.  Don’t wait too long before starting laxatives.
• Talk to your treatment team about how to manage bowel obstruction. If your stomach is swollen and you are in pain, call 000 as it may be an emergency.

All of the options to manage symptoms are generally considered palliative treatment because their main aim is to improve quality of life by reducing symptoms. Palliative treatment is one aspect of palliative care, in which your health providers aim to meet your physical, emotional, cultural, social and spiritual needs. Palliative care also provides support to families and carers.

Contacting a specialist palliative care service soon after diagnosis gives them the opportunity to get to know you, your family and your circumstances. Although other professionals will be responsible for your treatment in the earlier part of your diagnosis, the palliative care service can become involved at any time.

Ask the doctor in charge of your medical care about a referral to a specialist palliative care service.

Download our booklet ‘Understanding Palliative Care’

Download our booklet ‘Living with Advanced Cancer’