Managing symptoms and side effects of metastatic breast cancer

Breast cancer and its treatment can cause a number of symptoms and side effects. The greatest influence on the type of symptoms and side effects that you experience will be the sites your cancer has spread to and the type of treatment you are having. Other factors, such as your general health and wellbeing, will also play a part in how your symptoms may affect you.  

The following section also provides information on managing a wide range of symptoms and side effects. Remember that everyone is different, and you are unlikely to experience all of these symptoms or side effects. Some people experience very few or have only mild side effects or symptoms.  

Pain

Many people believe that pain associated with metastatic breast cancer is inevitable. This is often one of people’s greatest fears. However, some people experience no pain at all and others very little.  

It is important to know that pain can almost always be controlled. There are a number of treatments aimed at reducing or eliminating pain caused by metastases. There are also many different pain-relieving medications (analgesics) that can be used on their own or in combination to help people affected by metastatic breast cancer.  

Over-the-counter pain medications  

Over-the-counter medications and prescription drugs can be helpful to reduce or eliminate pain associated with metastatic breast cancer. Over-the-counter medications, including paracetamol (Panadol), can be effective in relieving mild pain and are most effective if taken regularly rather than waiting until the pain returns or worsens. Anti-inflammatory medications, such as aspirin and ibuprofen (Nurofen), can also be effective in relieving mild pain.   

Prescription medications for pain  

Codeine-containing medications, such as Panadeine and Panadeine Forte, can be effective in relieving moderate to strong pain associated with metastatic breast cancer, but you will need a prescription from your oncologist or GP to purchase them.  

Opiate painkillers are prescription medications provide clinicians with options for helping manage moderate or more severe pain. There are many different versions of opiate painkillers, and new ones are introduced from time to time. The usual approach is the use of a slow-release form – these are either oral medications or patches that are placed on the skin and renewed every few days.  

Examples of opiate painkillers are:  

• Oxycontin, Targin and Endone (containing oxycodone)  
• MSContin or Kapanol (containing morphine)  
• Jurnista and Dilaudid (containing hydromorphone)  
• Durogesic (Fentanyl) patches.  

You may also be able to use fast-acting (as opposed to slow-release) pain medication for what is called “breakthrough pain”, which is pain that occurs despite the slow-release pain medication.  

Examples of these fast-acting medications are:  

• Endone, Dilaudid (tablets)  
• morphine mixture (liquid)  
• Actiq, Abstral (fentanyl lozenge).  

The steroid medication dexamethasone can sometimes be very helpful for pain associated with metastases, such as bone or liver metastases.  

Radiotherapy for pain relief  

Radiotherapy can be a very effective way of reducing bone pain in people who have bone metastases.  Treatment may be given as a single dose or over several days. It can also help with bone healing. Treatment is generally well tolerated and has few side effects. 

Who can help me control my pain?  

It should be possible to achieve good control of your pain. It is important for you to let your team know if you are having a lot of pain, as a change in dose or use of different drugs may be helpful.  

Sometimes, your oncologist may suggest you see someone who specialises in cancer pain management, perhaps at a pain clinic or through a palliative care service. Palliative care physicians usually provide this advice in a cancer treatment team. 

It is important to talk with your treating team about any pain you may be experiencing. The more accurately you can describe the pain, the easier it will be for your doctor to prescribe the most effective treatment.  

Some people worry that if they take too much pain medication, they may become dependent on it. You may also find yourself worrying that increasing the amount of pain medication you are using means that your cancer is getting worse. There are many myths about pain-relieving agents and cancer, particularly morphine, which is why it is important to speak with your doctor about your pain and talk about what pain relief options may work best for you. 

Non-medical pain relief  

Complementary therapies may be helpful to reduce or control pain. 

• Massage – massage with an aromatherapy blend may help you to relax but ask your masseur to avoid any inflamed or swollen areas. Some oncologists prefer that people with metastatic cancer see an accredited oncology massage therapist. Acupuncture – research shows that acupuncture may relieve pain. 
• Relaxation techniques – relaxation techniques such as breathing or yoga may also help you manage pain.  
• Cold packs – because cold packs decrease the flow of blood, they may provide effective relief for pain related to inflammation, joint pain or muscle aches and spasms. Cold packs, including ice and/or ice packs, should not be applied to areas being treated by radiotherapy, and they should not be used where circulation is poor.  
• Warm packs – warm packs increase blood flow, which can make them more effective for pain caused by stiffness or muscle tightness. Heat packs should not be applied to areas being treated by radiotherapy. 
• Frames and supports – if your pain is exacerbated by pressure, there are frames that can protect you from the weight of your bedding. Back supports may make sitting more comfortable, and other devices may help you with specific problem areas. Most of these aids can be hired for a relatively small fee. Your doctor, social worker or palliative care team should have the information you need or be able to refer you to a physiotherapist or occupational therapist.  

Peripheral neuropathy (nerve pain)  

Peripheral neuropathy is the general term for pain or discomfort caused by damage to the nerves of the peripheral nervous system. Your peripheral nervous system is made up of the many nerves that bring signals from the brain and spinal cord to other (or peripheral) parts of the body, such as the hands and feet. Damage to those nerves can affect the way the body sends signals to muscles, joints, skin and internal organs. This can cause pain, numbness, loss of sensation and other symptoms. 

Some of the intravenous chemotherapy drugs, including the family of drugs called taxanes and eribulin, can cause neuropathy that for some people can be significant. Some oral forms of chemotherapy, such as Xeloda (capecitabine) and Navelbine (vinorelbine), and some of the targeted therapies, including HER2 therapies, can also cause neuropathy.  

Chemotherapy-associated neuropathy can start any time after treatment begins, and it may worsen as treatment continues. Usually it begins in the toes, but it can expand to include the legs, arms, hands and fingers.  

The most common symptoms include:  

• pain, tingling, burning, weakness, tickling, or numbness in arms, hands, fingers, legs and/or feet  
• sudden sharp stabbing pain sensations  
• loss of touch sensation  
• trouble using hands/fingers to pick up objects, fastening clothing or typing on a keyboard.  

Neuropathic pain can also occur from cancer causing damage to nerves.  

Treatment for peripheral neuropathy  

It is important to tell your medical oncologist or nurse straight away if you experience symptoms of peripheral neuropathy so they can be managed before they get any worse. Your doctor may discuss changing your treatment plan to prevent any more nerve damage. These changes might include, for example, reducing the dose of chemotherapy or switching to another chemotherapy drug.  

Medications that can help reduce the pain and discomfort associated with neuropathy include:  

• Cymbalta (duloxetine) 
• Lyrica (pregabalin) 
• Neurontin (gabapentin) 
• Tegretol (carbamazepine) 
• Endep (amitriptyline).   

Talk to your treating team about strategies to help you effectively manage peripheral neuropathy.  

Joint pain  

Some hormone-blocking therapies may cause joint pain as a side effect. In particular, if you are taking an aromatase inhibitor (anastrazole, letrozole or exemestane) you may experience some joint stiffness or pain.  

Joint stiffness most commonly occurs in the morning, and it tends to improve as you move around more. Some people find that gentle exercise and stretching helps, such as hydrotherapy (exercise in water), swimming, tai chi and yoga. If you want to try exercise, or if exercise is new to you, see Exercise and staying fit for suggestions on how to get started.  

Acupuncture has also been shown to help joint pain for some people, and research trials are continuing in this area.    

Over-the-counter drugs such as paracetamol or non-steroidal anti-inflammatory drugs (NSAIDs) such as Nurofen (ibuprofen) or Voltaren (diclofenac) may help relieve joint pain. Your doctor or pharmacist can give advice about what option may be best for you.  

Low blood counts and risk of infection  

Treatment such as chemotherapy, particularly the anthracycline and taxane groups of drugs, can reduce the number of white blood cells your body produces and so increase your risk of infection. While you’re being treated, you’re likely to have regular blood tests to monitor your blood count. Your doctor may also order an injection of a growth factor (G-CSF) such as filgrastim to help the body produce more white blood cells and reduce the risk of infection.  

If you have a fever of 38ºC or more you must immediately contact a member of your treatment team or attend a hospital emergency department, as this may be a sign of infection.  

Fatigue and tiredness  

Fatigue is a common symptom of metastatic breast cancer, and it can also be a side effect of treatments, including chemotherapy and radiotherapy.  

Poor nutrition, lack of sleep, pain and psychological issues such as stress, anxiety and depression can also contribute to fatigue, leaving you feeling exhausted and lacking in energy. This can then have a negative impact on your ability to cope, your quality of life and your independence.

Sometimes chemotherapy or the cancer itself causes anaemia, which can worsen fatigue. Regular blood tests will check your blood cell count while you are being treated.  

Many of these factors relating to fatigue are treatable, so be sure to raise any issues with your doctor. 

Nausea  

Nausea is occasionally caused by the cancer itself, especially if the liver or brain is affected or metastases in the bone are causing hypercalcaemia (high levels of calcium in the blood). Nausea may also be a side effect of chemotherapy, radiotherapy to the abdomen or brain, or strong pain killers. It can also be a symptom of constipation. Anxiety can worsen the feeling of nausea.  

Medications used to control nausea are known as antiemetics. They work in different ways; if one isn’t effective, another one may be, so be sure to let your doctor know. If you feel too sick to swallow a tablet, many antiemetics are available as suppositories, injections, or under-the-tongue lozenges or wafers. Steroids can also help control nausea caused by chemotherapy and liver and brain metastases.  

Modern anti-nausea drugs make it less likely that a person will experience excessive vomiting. However, talk to your doctor if you are experiencing vomiting. Complementary therapies such as relaxation therapy, hypnosis and acupuncture can help to manage nausea and vomiting.  

Practical suggestions to help manage nausea and vomiting:  

• Have small, frequent meals  
• Avoid fatty or fried foods or food with a strong odour  
• Rest before and after eating  
• Sip fizzy drinks such as soda water, dry ginger or lemonade  
• Follow the antiemetic schedule recommended to you by your oncology support team  
• Ask your oncologist for additional medications you can take if you feel nauseated in between your regular antiemetics  
• Sip plenty of fluids throughout the day.  
• See a dietitian for advice on what foods to avoid.  

Constipation  

Constipation occurs when your bowel movements are infrequent (generally defined as less than three per week) and/or difficult to pass, and it can make you feel very uncomfortable and unwell. Unfortunately, constipation is very common in people with metastatic breast cancer because it can be caused by both the cancer and its treatment, especially chemotherapy and antiemetic and analgesic medications. Constipation may worsen if you stop exercising during treatment or change your eating and drinking habits, so it is best to work with your treating team to find the approaches that can help relieve your constipation.  

Maintaining a healthy fluid intake is very important. You may find it easier if you take frequent sips throughout the day. Small, regular amounts of fluid and food are often more easily tolerated. Try to eat plenty of fresh fruit and vegetables and choose high-fibre foods such as wholemeal breads and cereals. Regular exercise such as a daily walk can also make a difference.  

If these strategies don’t help, your doctor may recommend a laxative such as coloxyl or senna. Fibre supplements such as Fybogel or Metamucil are generally not recommended for constipation related to cancer or cancer treatments, as they may make your constipation worse.  

Diarrhoea  

Some chemotherapy and targeted drugs can damage the healthy cells that line the small and large bowel, causing diarrhoea, which is generally defined by having three or more loose, liquid bowel movements in a day. Diarrhoea can also be caused by an infection or drugs used to treat constipation.  

Diarrhoea can be an unwanted minor side effect of treatment but can also sometimes be more serious. Uncontrolled diarrhoea may lead to dehydration, electrolyte imbalance and kidney problems, so if you are having frequent diarrhoea episodes, or if diarrhoea continues for more than 24 hours, it is important to let your oncologist, nurse or GP know immediately.

You should also seek medical advice if you have diarrhoea and experience any of the following symptoms: 

• Fever of 38°C or higher  
• Moderate to severe abdominal cramping/pain/straining/bloating  
• Dizziness  
• Dark (concentrated) urine  
• Dry mouth  
• Black stools or blood in stools  
• Sudden or rapid heartbeat.

As well as causing you to lose fluid from your bowel, diarrhoea can also cause you to lose salts such as sodium and potassium.

Rehydration fluids such as Gastrolyte can replace both the water and salts. You can purchase this over the counter at your pharmacy and some supermarkets. Your doctor may also recommend other medications such as Imodium or Gastro-Stop (loperamide) that can help you manage your symptoms and may be purchased over the counter. 

Poor appetite  

Many aspects of cancer can cause you to lose your appetite, including your illness, treatment side effects such as a sore mouth or altered taste; fatigue; constipation; diarrhoea; and feeling anxious, sad or frustrated. 

Many causes of a reduced appetite can be treated, so let your doctor know if you are struggling to eat well. You may wish to seek advice from a dietitian. The more you can let your treating team know about the changes in your appetite, the better your chances of them being able to help you manage the problem. You might like to keep a note of any weight you have lost or gained, when your appetite is better or worse, and whether it is associated with other symptoms such as nausea, constipation or stomach pain.  

Simple changes to help improve your appetite  

• Try eating small amounts throughout the day rather than sitting down to large meals at set times.  
• Reduce food and cooking smells – turn on a fan or open the windows.  
• Where possible, choose nutritious foods you enjoy – but don’t force yourself to eat things you don’t fancy just because they’re ‘good for you’.  
• Keep a glass of water handy if your mouth is dry but restrict yourself to small sips – too much water may make you feel full. You could also try sucking on small ice cubes.  
• Don’t rush, and don’t force yourself to eat.  
• If you are finding it difficult to eat solid food, drink protein and carbohydrate mixes (such as Sustagen) for energy, protein and vitamins.  
• Soft foods may be more appealing if your mouth is dry or sore. Try soft, slow-cooked stews and soups, custards and yoghurts.  

People who eat a quality, balanced diet don’t generally need supplements. However, when you have cancer, problems with appetite may mean your diet isn’t as balanced as it could be. Daily multivitamin and mineral supplements might help improve your appetite. Your doctor, pharmacist or dietitian will be able to help you find the most appropriate supplements for you.  

Mouth ulcers  

Mouth ulcers can occur with chemotherapy and some targeted therapies, usually appearing five to 10 days after the start of each treatment cycle and clearing up within one to two weeks. Good oral hygiene helps prevent mouth ulcers, but if they occur they can be treated with analgesics such as paracetamol, by applying a local anaesthetic gel or by using sodium bicarbonate (baking soda) as a mouthwash. 

There are mouth care products that are helpful for chemotherapy patients. Talk to your pharmacist for advice. Using a soft toothbrush and maintaining good dental hygiene, including regular appointments with your dentist, can help avoid complications from mouth ulcers associated with chemotherapy. It may be helpful to suck ice chips or an icy pole during your chemotherapy infusion and for a time afterwards.  

Talk to your doctor or nurse about an effective mouthwash for your situation.  

Nail problems  

Fingernails and toenails may be affected by chemotherapy, becoming cracked and discoloured. Sometimes they also become tender. 

You can help to prevent or manage nail changes by:  

• using a nail strengthener such as Revitanail  
• using nail polish remover that does not contain acetone  
• keeping your nails clipped short  
• regularly applying moisturising cream to your nails and cuticles  
• keeping your hands and nails clean to avoid infection  
• wearing protective gloves while you’re doing household chores, particularly washing dishes  
• using a topical antiseptic cream such as Savlon if your nails split or break, to avoid infection.  

If these tips don’t help and you’re feeling distressed by these side effects, talk to your oncology nurse. It may be worth considering cooling gloves or socks (e.g. ice gloves and socks). Otherwise, skin and nail changes generally resolve themselves once you have finished treatment.  

Feeling vague: 'Cognitive impairment’  

Many people report mental fogginess (i.e. “brain fog”), memory loss or feeling vague while being treated with chemotherapy and/or hormone-blocking therapy. It is important to tell your doctors if you are experiencing cognitive changes so they can identify potential causes and help you manage them.  

Ongoing research is being conducted to better understand how best to manage the symptoms of cognitive impairment related to chemotherapy and/or hormone-blocking therapy.  

Strategies that you may find helpful to manage cognitive impairment include:  

• Mindfulness – any kind of yoga or mindfulness practice, such as sitting or walking meditation, can help you develop your ability to pay attention and help your memory. 
• "Brain exercises” or "brain training”, including activities such as word puzzles or maths quizzes 
• Physical exercise – memory and executive function (i.e. decision-making abilities) have been shown to improve after mild to moderate physical exercise.   
• Work on your strengths rather than focus on your weaknesses – try doing things you know you can do well, and don’t be too hard on yourself. Think about stress management techniques that have worked for you in the past.  
• Carry a notebook with you and write down things which are important to remember. Alternatively use the notes function on your mobile phone.  

Heart problems  

The anthracycline group of drugs can affect your heart muscle, though this is a rare side effect of chemotherapy. The HER2 therapies can also affect your heart function. Your heart may be tested before and during treatment with these drugs. Your oncologist should talk to you more about this. 

Swelling in the arms and legs  

Some chemotherapy drugs, particularly docetaxel (Taxotere), can cause fluid retention. Swelling in the feet and ankles is more common than elsewhere in the body because of gravity. The steroid premedication taken with docetaxel helps to minimise fluid retention, so it’s important to take it as prescribed by your medical oncologist.  

Skin changes  

Some types of chemotherapy can cause dryness, itching, redness or peeling of the skin.  Some drugs make your skin more sensitive to the sun, so it is important to cover up outdoors and use sunscreen. Non-perfumed moisturisers may help. 

When you are having radiotherapy treatment the skin may become reddened, dry and itchy. Radiotherapy staff can recommend ways to help you manage this. The following suggestions may also help you:  

• Avoid chemicals that can irritate the skin such as perfumes, deodorants and hairsprays  
• Use non-scented cleansers and moisturisers, such as MooGoo, that you can purchase over the counter from most pharmacies 
• Wear sun-protective clothes and sunscreen over the treated area when you are outdoors 
• Avoid damaging the skin in the treated area 
• Keep skin folds dry.  
• Breathing problems  
• Being short of breath is very frustrating, especially when it limits your activity, and it can also be frightening. It is sometimes referred to as dyspnoea (pronounced disp-nee-uh). 
• Breathlessness doesn’t necessarily mean that the cancer is getting worse. It could be due to a build-up of fluid on the lungs, an infection, blood clots or anaemia, all of which can be treated.  
• Good pain control is very important. If it hurts to breathe deeply or to cough, you’re likely to avoid doing both. This could cause secretions to gather in your chest and restrict your breathing.  
• In some cases, oxygen may be helpful. Morphine can also be prescribed, as it relieves anxiety as well as breathlessness. While it’s normal to feel anxious if you’re having trouble breathing, the anxiety can make the problem worse. 
• If breathlessness persists, you may find the following strategies helpful:  
• Try sleeping sitting up, supported by pillows.  
• Take things slowly and try to focus on what you can do rather than becoming frustrated and angry about what you can’t.  
• Open the window or use a fan to create a feeling of air in the room.  
• Ask your doctor whether seeing a physiotherapist could help.  
• Do what you can to avoid feeling anxious and fearful – relaxation or mindfulness techniques sometimes help.  
• Talk to your doctor about trying anti-anxiety or antidepressant medication.  

If you have a sudden episode of unresolved breathlessness that you cannot explain, seek medical help immediately.  

Headaches  

Headaches may be mild or severe, occasional or more frequent, and due to several causes such as muscular tension, exhaustion, dehydration, hypercalcaemia (high calcium), migraines or medication side effects. More rarely, headaches that continue and do not respond to medication may be a symptom of metastases in the brain, so seek medical advice if you are concerned.  

Discuss your headache with your doctor so that they can investigate the cause and suggest treatment options. You might also consider increasing your water intake and using heat packs on your neck to relieve tension. A physiotherapist may be able to suggest exercises or strategies to help relieve your headache.  

Menopausal symptoms  

Menopause is the change that occurs in your body when your ovaries stop producing the hormone oestrogen. Treatments for metastatic breast cancer can trigger menopause, either temporarily (e.g. chemotherapy or hormone-blocking therapies) or permanently (e.g. surgery).  

You may experience one or more side effects of menopause, such as hot flushes and sweats, tiredness, insomnia, vaginal dryness, decreased libido, aches and pains, and mood swings. Each person will experience the effects of menopause in different ways. If you are already going through menopause at the time of your diagnosis, your treatment may intensify the symptoms. 

Your doctor can advise you about creams and treatments for vaginal dryness and medication for hot flushes. Regulating your body temperature by having tepid baths, wearing layered cotton clothes and limiting hot drinks and alcohol will also help. Many people find exercise, meditation and relaxation exercises helpful.  

If you are experiencing severe menopausal side effects that are impacting your quality of life, talk with your oncologist about medications available to assist you.