Managing physical changes for women with metastatic breast cancer

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Metastatic breast cancer affects different women in different ways. The symptoms experienced by individual women will vary according to which parts of the body are affected. Some symptoms may be the result of the cancer or its treatment. Others may be caused by other illnesses or medical conditions.

It’s important for women with metastatic breast cancer to tell their doctor about any symptoms they are experiencing, or if symptoms get worse.

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Managing pain

Metastatic breast cancer affects different women in different ways. Some women have no pain, others find that pain affects them at certain times of the day or night or while doing different activities. The type and level of pain experienced by two women who have cancer in the same parts of the body may not be the same. Not everyone with metastatic breast cancer finds it painful.  Pain caused by metastatic breast cancer doesn’t always get worse with time.

Cancer pain can usually be controlled. It’s rare to have cancer pain that cannot be lessened or changed

What causes pain for women with metastatic breast cancer?

Understanding the reasons for cancer pain can help when working out the best way to manage the pain.

Cancer pain may be caused by:

  • cancer pressing on nerves or soft tissue in the body
  • side effects of treatment, such as radiotherapy or surgery
  • a bone fracture
  • cancer in the bone
  • infection
  • a blood clot caused by cancer or its treatment
  • a blockage in the bowel.

Pain may also be due to other medical conditions that have nothing to do with the cancer.

Describing pain

Many people don’t like to complain about pain. However, it’s important to report any new or worsening pain so that doctors can find the most likely cause and recommend the best way of managing it.

Tips for describing pain

When describing pain, try to give the healthcare team as much information as possible.

Some people find it helpful to keep a diary, noting the times of the day when pain gets better or worse.

What to consider when describing cancer pain

QuestionWhat to think about
Where is the pain?
  • Is it in one part of the body or more?
  • Does it start in one place and spread during the day?
What’s the pain like?
  • What words best describe the pain?
  • Is it a dull ache or throb?
  • Is it a sharp, stabbing pain?
  • Is it more like a burning feeling or pins and needles?
How bad is the pain?
  • How does the pain compare with pain you have had before – for example, period pain, headache, a sports injury or childbirth?
  • How would you rate the pain on a scale of 1–10 (where 10 is the worst pain you can imagine)?
  • Does the pain keep you awake or wake you up at night?
Does anything make the pain get better?
  • Do you feel more comfortable if you sit or lie in one position?
  • Does a hot water bottle or ice pack help?
  • Does the pain get better if you take a painkiller like paracetamol?
  • Can you distract yourself with music or a good book?
Does anything make the pain worse?
  • Does it hurt more if you are moving around or sitting in a particular position?
Is the pain there all the time?
  • Does the pain come and go?
  • Is the pain worse at night?

Treatments for pain

Cancer pain can usually be controlled. It’s rare to have cancer pain that can’t be lessened or changed.

Drug treatments for cancer pain

There are lots of drugs available to manage different types of pain. Everyone is different in how they respond to pain relief. It may take a while to find the treatment or combination of treatments that’s right for an individual woman.

Some people have pain that comes and goes, and only need to take painkillers from time to time. Others have pain all the time. It’s better to prevent pain rather than waiting until it comes back. For women experiencing constant pain, it’s important to start pain relief when discomfort starts and continue taking it at regular intervals.

There are different ways of taking or giving drugs to manage cancer pain. The method used will vary according to the drug, the level of pain and other symptoms, such as nausea or vomiting.

Importantly, taking pain medication in tablet or liquid form is as effective as other forms and can make it easier for women with metastatic breast cancer to manage their medication at home.

Addiction to painkillers is very unlikely in women with metastatic breast cancer. The dose of the drugs can be increased or decreased according to individual needs. If one painkiller stops controlling pain, there are others that can be tried.

Other medical treatments for cancer pain

Other medical methods of pain relief used in metastatic breast cancer may include radiotherapy or surgery.

Non-medical forms of pain relief

There are a number of other ways to control pain that don’t involve using drugs. These can be helpful on their own or in combination with medical treatments.

  • Relaxation methods including abdominal breathing, progressive muscle relaxation and yoga, can ease cancer pain.
  • Acupuncture involves placing small needles in key areas of the body and can ease pain.
  • Some women find that massage and aromatherapy can help with relaxation and coping with pain. Massage should not be used on swollen or inflamed parts of the body. Massage should not be used during radiotherapy. Vigorous massage should not be used on parts of the body where there is known to be a cancer.
  • Some women and health professionals suggest that cold packs can be helpful to relieve pain where there is swelling or inflammation, and that hot packs can help relieve back or joint pain.
  • Support from friends, family, trained counsellors, other health professionals or other sources may help women cope with their pain.
  • Transcutaneous electrical nerve stimulation (TENS) is a way of stimulating the body’s own natural painkillers and can be helpful for relieving pain in particular parts of the body.

Questions to ask about managing pain

Listed below are some questions that may be helpful when talking about managing pain caused by metastatic breast cancer:

  • What pain relief drugs do you recommend for me and why?
  • How often should I take the drugs you are recommending?
  • What are the side effects of the drugs you are recommending?
  • Who should I contact if I develop side effects?
  • Are there ways I can manage the side effects?
  • Are there other ways I can help to relieve my pain?
  • Can the pain relief drugs interact with other medicines I am taking?
  • If I am taking pain relief drugs, can I drink alcohol?
  • Can I still drive while I am taking pain relief drugs?
  • Who should I contact if my pain changes/gets worse?

Managing symptoms and side effects of treatment

The symptoms of metastatic breast cancer and side effects of treatment will depend on where the cancer is and what treatments a woman is having. Symptoms might change with time. Not all symptoms are due to metastatic breast cancer. Some may be the result of treatment and others may be caused by other illnesses or medical conditions. It’s important for women with metastatic   breast cancer to report any new symptoms or if a symptom gets worse.

Tips for reporting symptoms of metastatic breast cancer

When describing a symptom, it’s important to provide as much information as possible. Some women find it helpful to keep a diary of how frequent or severe their symptoms are and how well symptoms are controlled so they can discuss this with their doctor.

Treatments are available to control and relieve symptoms of metastatic breast cancer and side effects of treatment. With some symptoms and side effects, the treatment recommended may depend on the underlying cause of the symptom.


Hypercalcaemia
What is it?High level of calcium in the blood
What causes it?
  • Cancer in the bone: 
    • increase in the amount of calcium absorbed into the blood from the bones
    • inability of the kidneys to get rid of the excess calcium
Symptoms
  • Increased urination
  • Excessive thirst
  • Dehydration
  • Vomiting
  • Constipation
  • Muscle weakness
  • Drowsiness
  • Confusion
How to treat
  • Fluids to treat the dehydration
  • Treatment with drugs called bisphosphonates to stop damage to the bone
  • A change in hormonal therapy or chemotherapy

Tiredness (fatigue)
What causes it? 
  • The cancer itself
  • Low levels of red blood cells in the blood (anaemia)
  • Changes in the body’s metabolism
  • Side effects of treatment
  • Travelling for treatment
  • Coping with pain or other symptoms
  • Being worried or anxious about living with cancer
  • Depression
  • Sleeping difficulties
How to manage
  • Finding out what’s causing the tiredness can help you find ways to manage it
  • Gentle exercise
  • Red blood cell transfusion (for women with significant anaemia)
Tips for conserving energy
  • The following tips are based on the experience of health professionals and women themselves:
  • make sure symptoms such as pain are controlled properly
  • save your energy for things you enjoy doing
  • take things easy and break tasks down into manageable steps
  • try to get enough sleep
  • build in rest periods during your day
  • work out the best time of day for you to do things
  • organise some practical help before you start chemotherapy – help with childcare or making meals can give you more time to recover
  • encourage friends and family to have short, frequent visits rather than longer ones
  • eat a well-balanced diet
  • pace yourself and think about using aids or devices that will help you conserve your energy and help you get around more easily.
Fatigue and exercise

A normal reaction to feeling tired is to rest. However, research shows that exercise can help to reduce fatigue caused by chemotherapy and other treatments. Although it may not be what you would expect, exercise during and after treatment can help women feel less tired.

Exercise can also reduce the chance of weight gain and has been shown to help improve sleep, body image and mood. Gentle exercise like walking is ideal. Some women find that more strenuous exercise is also helpful. A physiotherapist or another member of the healthcare team can advise on suitable exercise programs.


Nausea and vomiting
What causes it?
  • Treatments for metastatic breast cancer such as chemotherapy and radiotherapy (less common with taxane chemotherapy)
  • Nervousness before the next cycle of chemotherapy (anticipatory vomiting)
  • Drugs for pain or symptom relief
  • Hypercalcaemia
  • Cancer in the brain or liver
  • A blocked bowel (bowel obstruction)
How to treat
  • Depends on the cause of the sickness
  • Treatment with drugs called anti-emetics
  • Treatment with drugs called steroids
  • Diet modification
  • Relaxation
Tips to help prevent nausea and vomiting

The following tips are based on the experience of health professionals and women themselves:

  • have frequent small meals instead of bigger main meals
  • avoid fatty or fried foods
  • rest before and after eating
  • don’t lie down during or after eating
  • make sure you drink enough fluids
  • see a dietitian for advice about what you should eat
  • do some relaxation training – this can be particularly helpful if nausea is caused by nervousness.

Loss of appetite
What causes it?
  • The cancer itself
  • Treatments for metastatic breast cancer
  • Drugs for pain or symptom relief
  • Being less active
How to treat
  • Seek advice from an accredited practising dietitian
  • Eat smaller, more frequent meals
  • Treatment with drugs such as medroxyprogresterone or steroids
Tips to help with appetite loss

The following tips are based on the experience of health professionals and women themselves:

  • eat small meals and snacks as often as you can during the day
  • eat a variety of foods and try to include foods that are high in fibre
  • choose foods you think you will enjoy and treat yourself when you feel like it
  • use ready-made foods if you are too tired to cook
  • drink protein and carbohydrate drinks if you find it difficult to eat solid food
  • don’t force yourself to eat if you can’t face it but take advantage of those times when you do feel able to eat.

Sleeping difficulties
What causes it?
  • Side effects of some drugs
  • Anxiety or depression
  • Pain
How to manage
  • Finding out what’s causing sleeping difficulties can help you find ways to manage it
Tips to help you sleep better

The following tips are based on the experience of health professionals and women themselves:

  • tell your healthcare team about any pain or other symptoms you have
  • do some gentle exercise each day – ask your doctor, nurse or physiotherapist about exercises you can do even if you are in bed or sitting down for much of the day
  • try and get into a routine during the day with visits from friends to keep you busy and stop you from dozing during the day
  • avoid coffee, tea and other drinks with caffeine in them in the afternoon and evening
  • have a warm drink such as herbal tea or warm milk before you go to bed
  • try deep breathing and relaxation
  • have a massage from a qualified massage therapist or a friend or partner
  • have a warm bath before you go to bed
  • try putting essential oils, such as lavender oil, on your pillow
  • if you have problems sleeping, use the time to read or listen to music.

Constipation
What causes it?
  • Side effects of drugs, especially painkillers
  • A low-fibre diet
  • Not drinking enough fluid
  • Not eating enough
  • Being less active
How to treat
  • Drink more fluids
  • Increase the amount of fibre in the diet
  • Treatment with oral laxatives
  • Suppositories or enemas (if required)
  • Gentle exercise
Tips to help prevent and relieve constipation

The following tips are based on the experience of health professionals and women themselves:

  • do gentle exercise – ask your doctor, nurse or physiotherapist about exercises you can do even if you are in bed or sitting down for much of the day
  • eat fresh fruits, vegetables, cereals and grains
  • abdominal massage can be helpful
  • drink more water or other fluids.

Mouth ulcers
What causes them?
How to treat
  • Treatment with painkillers such as soluble paracetamol
  • Treatment with a pain-relieving (analgesic) gel
  • Treatment of thrush or other mouth or throat infections
Tips to help relieve mouth ulcers

The following tips are based on the experience of health professionals and women themselves:

  • brush your teeth and gums with a very soft brush after every meal to prevent infection
  • use an analgesic gel from the chemist or sodium bicarbonate (baking soda) mouthwash to help relieve discomfort
  • you might need to take pain relief such as paracetamol.

Some mouthwashes can make ulcers worse – advice should be sought from a health professional before using a mouth wash.


Skin changes
What are they?
  • Skin redness, cracking, itching, peeling, dryness or acne
  • Nail changes
  • Increased sensitivity to the sun
What causes them?
  • Treatment with chemotherapy containing capecitabine
  • Treatment with radiotherapy (although this is rare with the doses used to treat metastatic breast cancer)
How to treat
  • Moisturising creams (ask a health professional for advice about what type to use)
  • Vitamin B6 (pyridoxine)
  • Steroids (for severe cases)
  • Referral to an occupational therapist may be helpful
Tips to prevent and relieve symptoms of skin changes

The following tips are based on the experience of health professionals and women themselves:

  • wear sun protective clothes or use sun screen when you are in the sun
  • avoid irritants – protect the skin from chemicals (for example, perfumes, deodorants, hair dyes or hair spray)
  • keep skin folds dry
  • keep hydrated – drink plenty of fluids to keep hydrated as dehydration is a common cause of skin dryness
  • avoid extreme weather conditions like severe cold and hot weather – these conditions can aggravate dry skin
  • wash clothes in a mild detergent – look for detergents labelled ‘allergen free’ or ‘unscented’.

Movement problems
What causes it?
  • Muscle weakness
  • Muscle wasting
  • Pain (especially bone pain)
  • Nerve problems
  • Pressure on the spinal cord
How to treat
  • Finding out what is causing movement problems can help you find ways to improve movement
  • Physiotherapy
  • Care to prevent pressure sores
  • Pain relief before any tests or activities that make the pain worse

Headaches
What causes it?
How to treat
  • Identifying and treating the cause of headaches, if possible, can help prevent or manage them
  • Treatment with pain relief
Tips to help prevent headaches

The following tips are based on the experience of health professionals and women themselves:

  • avoid bright lights and loud noises
  • lying with the head of the bed slightly elevated can help when the problem is due to cancer in the brain.

Pressure sores
What are they?
  • Sores or broken skin on a pressure point on  the body that develop due to pressure of lying or sitting
What causes them?
  • Lying or sitting in one position for long periods
How to avoid them
  • Try and move or change position as much as possible
  • If you are confined to bed, a palliative care or community nurse can show your carers how to move you properly
  • Special mattresses are available and may be useful (see your community nurse or palliative care team for more information)

Questions to ask

Listed below are some questions that may be helpful when talking about managing symptoms of metastatic breast cancer:

  • What’s causing my symptoms?
  • What can be done to manage my symptoms?
  • Are there things I can do to help relieve/prevent symptoms?
  • Who should I contact if my symptoms get worse?
  • How will these symptoms affect the quality of my life?

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