Managing symptoms and side effects
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, 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
- Neuropathy (nerve pain)
- Joint pain
- Low blood counts and risk of infection
- Fatigue and tiredness
- Poor appetite
- Weight loss or gain
- Hair loss
- Mouth ulcers
- Nail problems
- Feeling vague: 'chemo brain'
- Heart problems
- Swelling in the arms and legs
- Skin changes
- Breathing problems
- Menopausal symptoms
I take my regular pain meds so that I can rest and sleep as much as I can. This means that I can do the things I want to do or need to do more often than not, which helps contribute to my wellbeing most of the time.
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 drugs (analgesics) that can be used on their own or in combination.
Over-the-counter pain medications
Over-the-counter drugs and prescription drugs can be helpful to reduce or eliminate pain. Over-the-counter drugs include paracetamol (Panadol) which is effective for mild pain and is most effective if you take it regularly rather than waiting until the pain returns or worsens. Anti-inflammatory medications such as aspirin and ibuprofen (Nurofen) are also effective for mild pain.
Prescription medications for pain
Codeine containing medications such as Panadeine and Panadeine Forte is effective for moderate to strong pain but you will need a prescription from your oncologist or GP to purchase it.
Opiate painkillers are prescription drugs that provide the backbone of managing moderate or more severe pain. There are quite a number of 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 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’ – 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.
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 palliative care (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.
Non-medical pain relief
Complementary therapies may be helpful to reduce or control pain. 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.
Research shows that acupuncture can relieve pain, and relaxation techniques such as breathing or yoga may also help.
Because cold packs decrease the flow of blood they can provide effective relief for pain related to inflammation, joint pain or muscle aches and spasms. Warm packs increase blood flow, which makes them more effective for pain caused by stiffness or muscle tightness. Neither heat nor cold should be applied to areas being treated by radiotherapy, and cold packs should not be used where circulation is poor.
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 there are other devices to help 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, which for some people can be significant. Some oral forms of chemotherapy, such as Xeloda (capecitabine) and Navelbine, and some of the targeted therapies, including the 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, fasten clothing, type on a keyboard.
Neuropathic pain can also occur from cancer damaging 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 treatment plan may be changed to prevent any more nerve damage. For example, by reducing the dose of chemotherapy or switching to another chemotherapy drug.
There are medications that can help reduce the pain and discomfort associated with neuropathy. This includes Cymbalta (duloxetine), Lyrica (pregabalin), Neurontin (gabapentin), Tegretol and Endep.
Talk to your treating team about effective strategies to manage peripheral neuropathy.
Some hormone-blocking therapies may cause joint pain as a side effect. In particular, if you are taking an aromatase inhibitor (anastrazole, letrozole, 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 BCNA's 'Exercise and staying fit' page for some suggestions on how to get started.
Over-the-counter drugs such as paracetamol or non-steroidal anti-inflammatory drugs (NSAIDs) such as Nurofen or Voltaren may help. Your doctor or pharmacist can give advice about what option may be best for you.
Acupuncture has also been shown to help joint pain for some people, and research trials are continuing in this area.
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. Many of these factors are treatable, so be sure to raise any issues with your doctor.
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.
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.
Drugs 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-day anti-nausea drugs mean it is much less likely for people to 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 taking your regular antiemetics
- Sip plenty of fluids throughout the day.
- See a dietitian for advice on what foods to avoid.
Constipation can make you feel really uncomfortable and unwell. Unfortunately, it is very common in people with metastatic breast cancer as it can be caused both by the cancer and its treatment, especially chemotherapy and medications such as antiemetics and analgesics. It may get worse if you stop exercising during treatment or change your eating and drinking habits.
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 Fybogel or Metamucil are not recommended for constipation related to medicines or cancer, as they are likely to make this worse.
Some chemotherapy and targeted drugs can damage the healthy cells that line the small and large bowel, causing diarrhoea. 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 sometimes be more serious. If you are having more than six watery diarrhoea episodes in 24 hours, or if diarrrhoea continues for more than 24 hours and is not responding to changes to your diet or diarrhoea medications, 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
- Dark (concentrated) urine
- Dry mouth
- Black stools or blood in stools
- Sudden or rapid heart beat
As well as losing fluid from your bowel you can also lose salts such as sodium and potassium. Rehydration fluids such as Gastrolyte will replace both the water and salts. You can purchase this over the counter at your pharmacy and some supermarkets. Medication that can be purchased over the counter, such as Imodium or Gastro-Stop (loperamide) can be used to control persistent symptoms.
Uncontrolled diarrhoea may lead to dehydration, electrolyte imbalance and kidney problems, so contact your oncology nurse or doctor just to be safe.
There are many things associated with cancer that 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 of them can be treated, so let your doctor know if you are struggling to eat well, or seek advice from a dietitian. The more you can let her/him know about the changes in your appetite, the better your chances of managing 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 ones for you.
Weight loss or gain
I lost a lot of weight and was surprised that, when I went for my treatment, the nurses didn’t comment on it or offer to help. I eventually saw a dietitian who recommended a particular protein drink for cancer patients, which helped me put some weight back on. – Savannah
If you feel you aren’t able to eat enough to maintain your weight, your doctor may prescribe medication to stimulate your appetite, such as steroids.
It is important to remember that food can be a great source of pleasure. Indulging in foods that ‘hit the spot’ or satisfy a craving can provide a vital psychological lift.
Not all people with metastatic breast cancer lose weight. Some people gain weight, particularly during chemotherapy treatment. Some drugs used to manage the side effects of chemotherapy can add to weight gain, and some people gain weight because of changes in their metabolism, including those due to menopause brought on by treatment. Others respond to anxiety by eating more. Doing less exercise can also be a factor.
Many chemotherapy regimens include a steroid that reduces nausea but can increase appetite, which leads to weight gain. People who are taking a steroid also often notice that their face looks more rounded, or 'moon-faced'. This will subside when you no longer need to take the steroids for the chemotherapy treatment.
Gaining weight can affect you both physically and emotionally; ask your doctor or a dietitian for help.
Most people with metastatic breast cancer find their mood can be affected by everything from symptoms and side effects of treatment to anxiety about what the future may hold to issues at home and with relationships. It is quite normal to feel great one day and pretty ordinary the next. But if you find that you’re low for more than a couple of days at a time, that you can’t enjoy the things you normally would, or you feel overwhelmed and unable to move forward, you may be depressed.
Depression is common in people with metastatic breast cancer. Being depressed is not a sign that you aren’t trying hard enough. There are very effective treatments, including non-pharmaceutical strategies so talk to your medical oncologist or GP about what can be done to help you.
One of the ironies of metastatic breast cancer is that you might feel exhausted through the day yet find it difficult to sleep at night. There are many physical and psychological reasons why you may have difficulty sleeping when you have metastatic breast cancer. If physical symptoms like pain or nausea are interfering with sleep, they can probably be treated, but having a lot on your mind can also keep you awake.
Do what you can to sleep well. Strategies you can try for better sleep include:
- Take a warm bath.
- Have a relaxing massage.
- Drink warm drinks that you enjoy such as malted milk, milk with honey, or chamomile tea.
- Reduce caffeine intake during the day, preferably no more than two coffees per day and none after lunch. Try to avoid ‘energy’ drinks.
- Have a routine – aim to go to bed at the same time every night and get up at the same time every day.
- Make your bedroom comfortable – make sure your mattress and pillows support your neck and spine and that your room is quiet and dark.
- Avoid using technology (such as laptops or phones) immediately prior to sleep.
- Deal with barriers to sleep – If you have pain, don’t try to be brave; take some pain relief before going to bed so that pain doesn’t wake you.
- Practise relaxation techniques – relaxation exercises such as yoga, mindfulness, meditation and tai chi may lessen worry and stress. Slow, deep breathing can help with relaxation.
Talk to your doctor about strategies and or/medications that may help you sleep better.
Hair is part of who you are and losing it can cause you to feel like you have lost your sense of identity. It can also mean that you have less privacy around your diagnosis. You may feel that the whole world can see you are undergoing treatment for cancer. It is perfectly normal to feel distressed at the thought that your hair might thin or fall out completely.
If avoiding hair loss is important to you, or you have a special event coming up, talk to your medical oncologist about treatment options that may result in less significant hair loss. Some chemotherapy drugs are more likely to case hair loss than others, particularly the anthracyclines and the taxanes, so it may be possible to have a chemotherapy that is less likely to make you lose your hair if that is important to you.
Radiotherapy to the brain can also cause hair loss. Usually the hair will grow back several months after completing radiotherapy. It may be thinner and have a different texture.
Use of cold caps
Over the last 17 years I have lost my hair three times. During the winter months I wore beanies around the house and to bed to keep warm. When I wanted to be ‘out there’, I would wear my football beanie. I found bandanas very comfortable and light, and they come in a great range of colours. I had a wig but found the bandanas and beanies a lot more comfortable. – Di
To help prevent or reduce hair loss from chemotherapy, some oncology day centres offer cold caps (scalp cooling) to people receiving certain types of chemotherapy. A cold cap is usually a strap-on cap through which cold liquid circulates while you are having chemotherapy. The cooling effect of the cap is thought to prevent or reduce hair loss by putting the hair follicles into hibernation. If you would like to learn more about cold caps and whether they would be suitable for your situation, you may like to talk to your medical oncologist or oncology nurse.
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 to reduce the likelihood, but if they do occur they can be treated with analgesics such as aspirin or paracetamol, by applying a local anaesthetic gel or by using sodium bicarbonate (baking soda) as a mouthwash.
Biotene is a mouth care product line that has been particularly designed for chemotherapy patients. Talk with your pharmacist about whether it might be right for you. Using a soft toothbrush and maintaining good dental hygiene, including regular appointments with your dentist, can also 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 (similar mechanism as for cold caps and gloves).
Talk to your doctor or nurse about an effective mouthwash to use.
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
- wearing dark-coloured polish to protect your nails from sunlight
- 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 ice gloves. Otherwise, skin and nail changes generally resolve themselves once you have finished treatment.
Feeling vague: 'Cognitive impairment'
Many people report mental fogginess, 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. There are some strategies that have been suggested that might be helpful, including:
- Mindfulness – any kind of yoga or mindfulness practices such as sitting or walking meditation can help you develop your ability to pay attention, and could lead to better memory retention
- ‘Brain exercises’ or ‘brain training’ including activities, such as word puzzles or maths quizzes
- Physical exercise – memory and executive function (decision-making abilities, basically) 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.
The anthracycline group of drugs can affect the muscle in your heart, 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 will 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 because of gravity. The steroid premedication taken with docetaxel helps to minimise fluid retention, so it’s important to take it as prescribed.
Some types of chemotherapy can cause dryness, itching, redness or peeling of the skin; non-perfumed moisturisers may help. Some drugs make your skin more sensitive to the sun, so it is important to cover up outdoors and use sunscreen.
When you are being treated with radiotherapy the skin may become reddened, dry and itchy. Radiotherapy staff can recommend ways to manage this. The following suggestions may also help:
- 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 and keep skin folds dry.
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 dis-nee-a).
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 actually make the problem worse.
If breathlessness persists, you may find some of the following 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 straight away.
Headaches may be mild or severe, occasional or more frequent, and due to a number of 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 secondaries in the brain, so seek medical advice if you are concerned.
It is best to discuss any headache with your doctor so that they can investigate the cause and suggest treatment options. You may 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 you.
Menopause is the change that occurs in your body when your ovaries stop producing oestrogen. Treatments for metastatic breast cancer can trigger menopause, either temporarily (chemotherapy or hormone-blocking therapies) or permanently (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 woman will experience the effects 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 women 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.
- For more information about Managing symptoms and treatment side effects visit BCNA’s My Journey
- Join our online network if you think talking to others online and sharing experiences will help. There is also a private group for people affected by metastatic breast cancer.