Author: Breast Cancer Now; Unknown
Date: 0101-01-01T00:00:00+00:00
Keywords: after treatment; moving on; anxiety; depression
Publisher: Breast Cancer Now

MOVING FORWARD

For people living with and beyond a diagnosis of breast cancer

ABOUT MOVING FORWARD

Many people expect to feel relief once their hospital-based treatments for breast cancer have finished, and for some people this is the case. But it can also be a difficult and emotional time for several reasons.

It can mean leaving behind the routine and support you have become used to. Having much less contact with your hospital can leave you feeling isolated.

At the same time, family and friends may have moved on and expect you to do the same.

You may have focused on getting through the treatment and only have time to reflect on the impact of your diagnosis once treatment has finished.

Whether you’re just coming to the end of treatment, or your diagnosis of breast cancer was a few years ago, this booklet contains practical tips and information to help you adjust to life after treatment.

The quotes throughout the booklet are from people who have had breast cancer.

You may want to show the booklet to your family or friends to help them understand how you’re feeling.

While we sometimes refer to women in the booklet, men who have had breast cancer may also find it useful.

‘The end of treatment was a very strange time. I had a sense of relief that the process was finally coming to an end, mixed with an overwhelming sense of loss, fear and isolation.’  – Sarah

How to use this booklet

Moving Forward is designed to give you simple hints and tips that you may find useful after treatment.

It does not cover every topic in detail, and you may want more information on certain subjects. Throughout the booklet we recommend other free Breast Cancer Now publications, which cover topics in more depth.

The booklet is designed to be easy to dip in and out of.

You may want to read the whole booklet. Alternatively, you can just refer to the information that’s most useful to you.

If you have any questions or would like to talk about your concerns, you can call our free Helpline on 0808 800 6000.

Breast Cancer Now’s Moving Forward courses

Moving Forward gives you the tools to help you adjust to life beyond primary breast cancer treatment.

We know it's not always ‘back to normal’ when you finish hospital treatment for primary breast cancer. Coping with the shock of a diagnosis, treatment and side effects, and worries about recurrence can make it difficult to readjust to the everyday.

That’s why Moving Forward is here. Through supportive, open conversations in a safe, confidential space, you’ll connect with people who understand. And you’ll find the tools you need to feel more empowered, confident and in control. Ready to move forward with your life.

You can attend Moving Forward either at our face-to-face course or by joining online.

MANAGING PHYSICAL EFFECTS AFTER TREATMENT

Ongoing side effects of treatment can affect your daily life and might leave you feeling low. They can be a reminder of your breast cancer, which may make it harder to move forward.

In this section, you’ll find tips on how to manage common side effects such as fatigue, pain and menopausal symptoms.

We look at common concerns such as lymphoedema and hair regrowth after chemotherapy.

You might also want to talk to someone in your treatment team (your breast care nurse, oncologist or surgeon) or your GP about any side effects you’re having.

It’s important to speak to your GP or breast care nurse about any symptoms that are new or unusual for you.

‘The fatigue lasted for about two years after the treatment and I would say I still don’t think I have been quite the same since.’ – Sarah

‘It’s OK not to feel normal at the end of treatment. Take one day at a time and try to focus on looking forward.’ – Beth

Fatigue

Fatigue is extreme tiredness and exhaustion. It doesn’t always go away with rest or sleep and may affect you physically and emotionally.

It’s a very common side effect of breast cancer and its treatments, and may last for weeks, months or longer after your treatment has finished.

Most treatments used for breast cancer have side effects that can contribute to fatigue.

Fatigue can be made worse by worry and anxiety, or if you’re having trouble sleeping.

Tips for managing fatigue

Talk to your GP

Tell your GP or breast care nurse how you’re feeling. Your fatigue may have a treatable cause, such as anaemia which may be treated with iron supplements.

Use a fatigue diary

This involves recording your level of fatigue every day from 1 (no fatigue) to 10 (extreme fatigue). It can help you plan activities, especially those that require more energy.

Stay active

There’s strong evidence that regular moderate exercise (such as walking, cycling or swimming) can help reduce fatigue.

Rest, but limit naps

Try to get plenty of rest between your daily activities, but limit the number of naps you have. Keep naps to less than half an hour and avoid taking them in the late afternoon, so you sleep at night.

Try relaxation

Use relaxation techniques to help you relax and regain energy. There are many good online video tutorials, relaxation CDs or apps that can guide you through different techniques.

Stay hydrated

Drink plenty of fluids to keep hydrated. Being dehydrated can make you tired.

Eat well

Make the most of the times when your appetite is good and choose foods that give you energy over a period of time, like nuts and cereals.

Accept help

Accept offers of practical help from others where possible, for example help with household chores or getting to appointments. Often people want to help but don’t know what you need, so let them know.

Get support

There’s some evidence that being well supported may help reduce fatigue. For example, you could join a local support group if there’s one in your area, or have some individual counselling.

With Becca, the breast cancer support app, we’re with you even when your treatment has finished.

Our free mobile app offers tailored strategies and bite-sized tips to help you move forward after treatment.

Lymphoedema

Lymphoedema is swelling caused by a build-up of fluid in the body’s tissues.

The swelling commonly affects the arm and can include the hand and fingers. Swelling can also affect the breast, chest, shoulder or the area on the back behind the armpit.

Some people develop lymphoedema after surgery or radiotherapy to the lymph nodes under the arm and surrounding area.

Lymphoedema may develop soon after surgery, radiotherapy or chemotherapy, but it can occur many years later and may be triggered by a skin infection (cellulitis) or possibly injury.

Reducing your risk of lymphoedema

Maintain a healthy weight

Being overweight can increase your risk of developing lymphoedema.

Use your ‘at risk’ arm normally

You’re more likely to increase your risk of lymphoedema by overly protecting your arm and not using it enough.

Exercising the arm regularly can help, and you should be able to return to any sporting activities you did before surgery. If you haven’t been doing these activities regularly you’ll need to gradually build up your arm strength.

Lymphoedema only affects the side of the body that was treated. If you had treatment to both sides, then both arms will be at risk.

Care for your skin

To help reduce your risk of developing an infection:

·       Wash your skin with warm water every day and dry it thoroughly

·       Moisturise the skin daily to prevent dry and cracked skin (use a moisturising cream that suits your skin type)

·       Use a high factor sunscreen to protect against sunburn

·       Apply insect repellent to reduce your risk of bites and stings

·       Wear protective gloves in the garden (particularly when near rose bushes or brambles) or when taking hot dishes out of the oven

·       Take care when cutting your nails

·       Take care if using wax or a razor to remove hair from under your arm. Electric razors are gentler on the skin. You can use depilatory (hair removal) cream, but check first you’re not sensitive or allergic to it

·       Keep any cuts or grazes clean and use antiseptic cream

What to do if you notice any signs of infection

Contact your GP or breast care nurse as soon as possible if you have:

·       Redness or a rash

·       Heat

·       Swelling

·       Tenderness or pain

·       Flu-like symptoms

For more information and tips on reducing your risk, see our booklet Reducing the risk of lymphoedema.

Symptoms of lymphoedema

Contact your breast care nurse or treatment team as soon as possible if you notice any of the following symptoms.

Swelling

The most common symptom of lymphoedema is swelling.

While swelling in the arm or chest area often develops immediately after breast surgery, this is part of the healing process and usually settles without any treatment. However, it’s important to get any swelling assessed by your treatment team as soon as possible.

Swelling to your hand, arm, breast or chest that develops later on, or after your cancer treatment is completed, could be a sign of lymphoedema.

The swelling may:

·       Come and go to begin with

·       Be worse towards the end of the day

·       Be worse after strenuous activities or in hot weather

Clothing (particularly your bra) and jewellery (especially rings and bracelets) may feel much tighter than usual.

Tightness

The arm or breast can feel tight when there is extra fluid in the tissues. Some people feel tightness in the arm without the arm appearing swollen.

Discomfort

Discomfort can be an early sign of lymphoedema. Some people experience:

·       A dull ache

·       Heaviness in the arm, breast or chest area

·       Tingling

·       Numbness

Dry skin

Where there is swelling, the skin is stretched and can become dry and flaky and sometimes feel itchy. Dry, cracked skin increases the risk of cellulitis (a sudden infection of the skin and the tissue underneath it).

Arm stiffness

If your arm is swollen, it may limit movement in the joints.

Living with lymphoedema

Lymphoedema is a long-term condition, which means once it has developed it can be controlled but is unlikely to ever go away completely.

If you have developed lymphoedema, you can read more about how it can be managed in our booklet Living with lymphoedema after breast cancer.

When hair grows back

Hair loss is a common side effect of chemotherapy.

The rate at which hair grows back after treatment varies from person to person. Most people will have a full covering of hair after about three to six months, although for some people this can be patchy.

It may be weak and fragile or softer to begin with but over time the condition and texture of hair becomes stronger.

Hair can sometimes grow back differently to how it was before treatment. For example, the colour or texture may change, or it might be curlier or straighter than before.

Hair loss from breast cancer treatment is almost always temporary, but in rare cases it can be long-term or permanent.

Haircare tips from Cancer Hair Care

·       Cancer Hair Care cancerhaircare.co.uk has lots of information and tips on hair loss and regrowth after cancer treatment.

·       Some essential oils and other ingredients, such as rosemary, can help new hair growth

·       Gently massaging or shampooing your scalp can help the circulation of blood that flows to the hair follicle and helps the hair growth cycle

·       If you want to start using heated styling tools, it’s important to protect your new hair. Use heat protection products and do not overuse heated tools while your new hair is still fragile

·       Allow a minimum of a couple of centimetres (an inch) of new hair growth before colouring. Cancer Hair Care recommends you avoid high levels of peroxide and avoid bleach products

KEEPING A JOURNAL

Some people find it useful to keep a diary or journal.

Recording how you feel both physically and mentally can help you make sense of these feelings and identify the cause.

As time goes on, looking back through your diary may help you see signs that you’re recovering from your experience, both physically and emotionally.

You can also share this with your GP if you’re struggling with side effects.

What to record

It’s up to you how often you write in your journal, what you include and where you write it.

Here are some ideas for what to record.

Fatigue

·       What it feels like

·       How much sleep you’ve had, what time you went to sleep and when you woke

·       What activities you’ve done, and whether they made it better or worse

Pain

·       Pain rating out of 10 (1 = no pain, 10 = the worst pain you’ve ever felt)

·       Where the pain is, whether it’s in one or several places

·       How often pain occurs, how long it lasts and when it’s better or worse

·       What the pain feels like (a stabbing, nagging or burning sensation)

·       What makes the pain worse and what relieves it

Menopausal symptoms

·       Any menopausal symptoms you have, such as hot flushes, night sweats and vaginal dryness

Physical activity

·       Any exercise you’ve done, how long you exercised for and how difficult you found the exercise

Menopausal symptoms

Some breast cancer treatments cause menopausal symptoms.

Common menopausal symptoms may include:

·       Hot flushes and night sweats

·       Vaginal dryness

·       Mood changes

·       Decreased sex drive

·       Weight gain

·       Joint pain

·       Changes to skin and hair

Some women find these symptoms manageable, but many find they are difficult to cope with and can affect their quality of life.

You can find out more about managing menopausal symptoms in our booklet Menopausal symptoms and breast cancer. It includes a ‘checklist’ for recording symptoms, to help you start a discussion with your GP or breast care nurse.

It’s worth asking your GP or breast care nurse if there’s a specialist menopause clinic where you can get advice and information.

‘I used to worry that other people would see me getting hot and bothered during a hot flush.’ – Kim

‘At night time I can switch on the fan up to a dozen times! I had a chillow pillow in the first couple of years and it helped a lot.’ – Androulla

Androulla

Tips for coping with hot flushes and night sweats

·       Keep a battery-operated or paper fan with you at all times

·       Wear layers so you can remove clothing when a flush starts

·       Wear loose-fitting clothing made from natural fibres

·       Use a silk pillowcase, a specially designed pillow that stays cool or a cooling scarf

·       Always keep a bottle of water with you

·       Avoid caffeine, alcohol and spicy foods

·       Carry a water spray to use on your face or wrists to cool you down

Treatments for hot flushes are available, including non-hormonal drugs.

Some people find complementary therapies such as acupuncture helpful.

You can speak to your GP or treatment team about options for managing hot flushes.

Pain

Lasting pain after breast surgery or lymph node removal

Some people have pain in their breast, chest, arm or armpit for months or even years after they had surgery.

The pain is usually caused by bruising, stretching or damage to nerves during surgery or when scar tissue forms.

Tell your GP or treatment team about any ongoing pain, so they can assess it and help you manage it.

The following things can also help with pain.

Pain relief

Regularly taking simple pain relief, such as paracetamol or ibuprofen, either as a tablet or applied to the skin, may help.

Exercise and physiotherapy

Regular exercise has been shown to ease lots of types of pain. Some people may need to be referred to a physiotherapist, who can help work out an exercise plan.

Complementary therapies

Some studies show acupuncture may help reduce pain after breast cancer surgery.

Talking therapies and self-help techniques

Talking therapies, such as counselling and cognitive behavioural therapy (CBT), can help you find new ways to think about pain and the impact it has.

Some people practise self-help techniques such as relaxation, meditation and distraction.

Wearing a well-fitting bra

Wearing a well-fitting bra may make a difference if you’re in pain.

If your GP or hospital doctor cannot control your pain, you may benefit from going to a specialist pain clinic. You can ask your GP to refer you.

‘I had terrible nerve pain after my lymph nodes were removed. Gradually, though, and with the help of the physio, this abated.’ – Rebecca

Joint pain

Many women taking hormone therapy, particularly aromatase inhibitors such as anastrozole, exemestane or letrozole, have pain or stiffness in the joints.

Joint pain can usually be relieved with mild pain relief like paracetamol or an anti-inflammatory drug such as ibuprofen.

Exercise that gently stretches your joints or strengthens your muscles can help. Try a combination of weight-bearing exercises like walking or dancing, and muscle-strengthening activities like yoga or lifting light weights.

If you’re finding it hard to cope with side effects from one hormone therapy drug, speak to your treatment team. They may recommend changing to a different drug.

If the pain is severe, you may be able to be referred to see a rheumatologist (a doctor who has a special interest in joint and muscle pain). It may also help to see a pain management specialist at a pain clinic.

Bone health and osteoporosis

Some breast cancer treatments can increase the risk of osteoporosis, a condition where bones lose their density and strength.

The hormone oestrogen protects against bone loss and helps to keep bones strong. Breast cancer treatments that affect the amount of oestrogen in the body include chemotherapy, hormone therapy and ovarian suppression (removing the ovaries or stopping them from working).

Osteoporosis cannot be cured, though treatments are available to try to keep bones strong and less likely to fracture.

The Royal Osteoporosis Society has information about preventing, treating and living with osteoporosis. Visit theros.org.uk

Tips for healthy bones

Eat a healthy diet

A varied, balanced diet will give you the nutrients that are important for strong, healthy bones.

Get enough calcium

Calcium is a vital mineral for teeth and bones. Good sources include milk and dairy products, dried fruit and green leafy vegetables.

Milk alternatives such as soya, rice and almond milk do not naturally contain as much calcium as cow’s milk. Choosing dairy alternatives with added calcium can help.

Ask your team about a supplement

Vitamin D is needed to help your body absorb calcium.

The main source is sunlight, which your body uses to make this vitamin in your skin. However, it’s recommended adults take a vitamin D supplement especially in the winter months.

Calcium supplements are also available.

Your doctor may prescribe a combined calcium and vitamin D supplement.

Don’t drink too much alcohol

Too much alcohol can affect your bone density. The National Institute for Health and Care Excellence (NICE) recommends people who have had breast cancer limit their alcohol intake to below five units a week.

Keep active

Regular exercise can help keep bones strong. The Royal Osteoporosis Society has lots of information on what types of exercise are best for keeping bones strong and healthy. Visit theros.org.uk

WORRIES ABOUT CANCER COMING BACK

Most people worry about their cancer coming back. These worries are normal and usually lessen with time.

Most breast cancers do not come back after treatment. However, sometimes breast cancer can come back, and this is known as recurrence.

What is recurrence?

Recurrence is the term used for cancer that has come back after treatment. There are several different types of breast cancer recurrence.

Local recurrence

Breast cancer has come back in the chest or breast area, or in the skin near the original site or scar.

Locally advanced breast cancer (sometimes called regional recurrence)

Breast cancer has come back and spread to the chest wall or skin of the breast, or the lymph nodes around the chest, neck and under the breastbone. It has not spread to other areas of the body.

Secondary (metastatic) breast cancer

Cancer has spread from the breast to other parts of the body such as the bones, lungs, liver or brain.

What are the chances of breast cancer returning?

In the UK, the number of people surviving breast cancer has risen greatly over the past decade and most people diagnosed with primary breast cancer will not have a recurrence.

Each person’s risk of breast cancer recurrence is different and depends on many factors, such as the size, type, grade and features of the cancer and whether the lymph nodes were affected.

Your treatment team can tell you more about your individual risk of recurrence if you want to know this.

The risk of breast cancer recurring reduces as time goes on.

However, recurrence can happen even many years after treatment, which is why it’s important to be breast and body aware, and report any changes to your treatment team or GP.

Can I reduce my risk of recurrence?

As with the risk of breast cancer developing, the risk of a recurrence is largely out of a person’s control. But research suggests regular exercise, maintaining a healthy weight and keeping your alcohol intake within current guidelines may help reduce your risk of recurrence.

SIGNS TO BE AWARE OF

Tell your breast care nurse or GP if you have any symptoms that are new or unusual for you, don’t have any obvious cause and don’t go away.

Changes to the breast or chest area

Whether you’ve had breast-conserving surgery or a mastectomy, with or without reconstruction, it’s important to be aware of any changes to either side, such as:

·       Swelling on your chest, in your armpit or around your collarbone

·       A change in shape or size

·       A change in skin texture, such as puckering or dimpling

·       The nipple has become inverted (pulled in) or looks different, for example changed its position or shape

·       Liquid (discharge) that comes from the nipple without squeezing it

·       Swelling in the arm or hand

·       Redness or a rash on the skin, in or around the nipple or in the area of the scar line of your treated breast

·       A lump or thickening that feels different (with your treated breast this could be on or away from the scar line)

Possible signs of secondary breast cancer

·       Feeling sick most of the time

·       Severe or ongoing headaches

·       A dry cough or feeling of breathlessness

·       Any lumps or swellings under your arm, breastbone or collarbone

·       Discomfort or swelling under the ribs or across the upper abdomen

·       Loss of balance or any weakness or numbness

·       of the limbs

·       Altered vision or speech

·       Feeling much more tired than usual

·       Pain in your bones, for example in the back, hips or ribs, that doesn’t get better with pain relief and may be worse at night

·       Unexpected weight loss and a loss of appetite

Coping with worries about recurrence

Nearly everyone who has been treated for cancer worries about it coming back.

At first, every ache or pain can frighten you. But, as time passes, you may come to accept minor symptoms for what they are in most cases – maybe a cold or flu or the result of over-exerting yourself.

We all cope with anxiety in our own way. Talking about how you are feeling and getting the right support is usually the best approach.

Just as talking about your diagnosis and treatment may have helped you through the early days, talking about your fears relating to recurrence may help you later on.

Breast Cancer Now’s online Forum breastcancernow.org/forum lets you share your worries with other people in a similar situation to you.

You can also call our free Helpline on 0808 800 6000.

Follow-up after treatment

Once hospital treatment for breast cancer ends, you’ll usually be offered regular mammograms depending on the type of surgery you’ve had.

You may or may not also have regular appointments.

For more information on the different types of follow-up after treatment, see our booklet After breast cancer treatment: what now?

COPING EMOTIONALLY

You’ll probably have been through many different emotions since you were diagnosed with breast cancer.

You may still get upset, angry, anxious or low after treatment has ended.

This section looks at what you can do and who can help if you’re finding it hard to cope emotionally.

Anxiety and stress

After a diagnosis of breast cancer, you may feel more stressed or anxious than usual.

Some people may experience anxiety for the first time. If you have had anxiety in the past, your anxiety may feel different or worse than before.

There are techniques and support to help you reduce stress and cope with anxiety.

‘I don’t deal with stress as well as I used to and I get stressed far more easily.’ – Corrine

Things you can try yourself

Self-help techniques include:

·       Distraction – focusing on things around you, or a hobby or interest, to shut out negative thoughts

·       Planning – if you can, break down larger tasks into smaller tasks, achievable over several days, or make a list of priorities

·       Relaxation, visualisation, mindfulness and meditation – can be used separately or together to reduce stress and tension

·       Exercise and eating healthily – regular physical activity, eating well and not drinking too much alcohol can make a difference to your mood

·       Complementary therapies – some people find complementary therapies reduce stress

Talking therapies

Your breast care nurse or GP may be able to advise you on how to access talking therapies.

One-to-one counselling

Counselling allows you to explore feelings such as anger, anxiety and grief, which can be related to your cancer diagnosis, making them easier to understand and cope with.

Cognitive behavioural therapy (CBT)

CBT can help you to change patterns of thinking and behaviour that may be stopping you from moving forward.

‘The anxiety did become a serious problem so I got help from my GP with antidepressants and a counsellor to talk to.’ – Carol

Talking to other people

If you’re finding it difficult to cope emotionally, you might want to talk to someone about how you’re feeling.

You may find it helpful to:

·       Call our Helpline (0808 800 6000) to speak to one of our breast care nurses or trained staff who have a personal or work-related experience of breast cancer

·       Ask our nurses a question using the Ask Our Nurses email service or the Ask Our Nurses section of our online Forum

·       Speak to a trained volunteer who’s been through similar experiences to you through our Someone Like Me service

·       Speak to your own breast care nurse and ask what support is available in your area

To find out more about Breast Cancer Now’s services, visit breastcancernow.org

Low mood and depression

Most people experience some low mood and sadness after treatment for breast cancer.

Low mood usually improves after a short while, but if it doesn’t then you could have depression.

When to ask for support

If you or the people close to you are worried you might be depressed, talk to your treatment team or GP.

Depression can cause a wide range of symptoms, from feeling more tearful and irritable than usual to loss of enjoyment in everyday things, withdrawing from others and changes to appetite.

Your treatment team or GP can refer you to a counsellor, psychiatrist or psychologist for help and support.

Treatment for depression

Talking therapies

Professional support such as counselling or CBT can help. Your treatment team or GP can tell you about services in your area.

Antidepressants

Antidepressant drugs may be recommended to treat symptoms of depression. It usually takes up to six weeks before you notice the effects and start to feel an improvement in mood.

‘Some days I just feel incredibly low for no conceivable reason and that’s difficult to deal with.’ – Sarah

Useful organisations

Organisations that provide information or support that might help include:

·       Anxiety UK anxietyuk.org.uk

·       Mental Health Foundation mentalhealth.org.uk

·       Mind mind.org.uk

·       NHS website nhs.uk/mental-health

·       SAHM for Scotland’s mental health samh.org.uk

·       Samaritans samaritans.org or call 116 123

Feeling isolated

After treatment, you may find it difficult to relate to others and for them to relate to you.

Those around you may be eager for you to return to the person they knew before you were diagnosed. This in turn can make you feel very isolated and alone.

You might feel the need to avoid situations where you have to deal with others’ responses to you.

If you’re feeling isolated

Sharing your feelings with your healthcare team or a counsellor can help you feel more confident and comfortable with yourself.

You may find it useful to ask those close to you to read this booklet to help them understand the issues you may be facing. This may help you talk to them about how you’re feeling.

Talking to someone else who has been through similar experiences may help you feel less isolated and learn how to cope better.

Feelings about your body after treatment

Being treated for breast cancer can cause changes to your body and the way you look.

If you had surgery you’ll be left with a scar or scars. You may have lost your hair if you had chemotherapy. Many people also put on weight

during or after treatment.

Even though many of the effects of treatment can be temporary, they can still be very upsetting and have an important effect on how you see your body.

Your confidence and self-esteem can be affected. For example, some women feel uneven or incomplete after surgery. You may feel very self-conscious.

However, these initial intense feelings should lessen over time as you get more used to how you look now.

Getting used to the changes that have taken place and adjusting to life after breast cancer can take time.

If you continue to find looking at your body difficult or upsetting, it may help to speak to a counsellor. Your treatment team or GP should be able to arrange this.

Our Someone Like Me service can put you in touch, by phone or email, with someone who’s finished their treatment and has been trained to help.

Women’s feelings about their body after cancer

‘I felt like my body had let me down. As time goes on I try and see my scars as signs of my strength but it’s not always easy.’ – Beth

‘I don’t mind the scars that I have – they are a reminder of what I have been through and how lucky I am to be here.’ – Heather

‘Initially I was self-conscious of the scar area, but now have accepted it and don’t even think about it when in the changing rooms of a pool or during a spa day where other ladies could see it.’ – Kim

‘Generally I feel comfortable with my body. I work out to keep in good shape, which gives me confidence. I think feeling fit helps.’ – Zoe

DIET, EXERCISE AND PHYSICAL WELLBEING

Many people want to know what they can do to look after their health following treatment.

This section looks at diet and exercise after treatment, and also has tips if you’re finding it hard to sleep well.

We also look at complementary therapies, which some people find useful after treatment.

Diet after breast cancer treatment

After treatment, you may have gained or lost weight, or you may want to know if diet can play a role in your recovery and future health.

The following tips are taken from our booklet Diet and breast cancer.

If you’re concerned about your weight…

Your GP or practice nurse can assess if your current weight is healthy and may refer you to a dietitian if needed. They can also let you know about any local schemes aimed at helping people manage their weight.

Some treatments can affect bone health…

So make sure you get enough calcium from your diet. Good sources include milk and dairy products, green leafy vegetables and dried fruit such as apricots and figs.

There’s conflicting evidence about whether some herbal products are safe or effective…

So talk to your specialist, GP, pharmacist or a dietitian before taking them. You can also find information about herbal medicine on the Sloane Kettering website mskcc.org

‘I am much more conscious about what I eat. I started to keep a food diary, and that enabled me to cut out some of the junk.’

Catriona

Can diet affect the risk of cancer coming back?

There’s some evidence that a higher fibre intake may reduce the risk of breast cancer recurrence, but further research is needed to find out more. Fibre has many health benefits, and high-fibre foods tend to be lower in calories and can help you feel full for longer.

There’s some evidence that a lower saturated fat intake may affect the risk of recurrence, but again further research is needed to find out more. It’s a good idea to limit the amount of fat you eat, particularly saturated fat, because it increases the risk of conditions such as heart disease.

Maintaining a healthy weight, as well as limiting alcohol and being physically active may also help reduce the risk of recurrence.

There’s no conclusive evidence that following a specific diet, such as a dairy-free diet, reduces the risk of recurrence.

Exercise after treatment

Regular physical activity has many benefits, and there’s evidence to show that being active and maintaining a healthy weight after treatment may reduce the risk of breast cancer coming back.

Before you start any exercise, discuss it with your treatment team or GP, then begin gently and build up gradually.

If you had reconstruction surgery, check with your treatment team when you can start exercising and which exercises are safe.

Getting started and staying motivated

·       Start with short walks, gentle stretching or deep breathing exercises

·       Find a buddy to exercise with

·       Use a walking app or pedometer to monitor your daily step count

·       Set realistic and achievable goals, short-term ones to begin with

·       Work out what barriers you might have before beginning an exercise   programme, such as family or work commitments

·       Choose something you enjoy and that works with your lifestyle

·       Select a time in the day when your energy levels are higher

·       Know that your efforts come with physical and emotional rewards

·       Keep a journal to note your progress

You’ll find lots more tips for keeping active after breast cancer treatment on BECCA, the breast cancer support app.

‘I exercise more since treatment. I started jogging, which is something I hadn’t done before, and I’m trying to do regular 5k parkruns.’ – Beth

Sleep

Difficulty sleeping can have a number of causes, from stress and anxiety to night sweats or hot flushes.

Tips that might help you get a good night’s sleep

·       Exercise – regular moderate exercise during the day can help, but try to avoid exercise late in the evening.

·       Avoid caffeine after mid-afternoon – caffeine-containing drinks include tea, coffee and many fizzy drinks

·       Limit alcohol – alcohol may help you get to sleep but it can also cause disrupted sleep

·       Limit daytime naps – keep them to less than half an hour at a time and avoid late afternoon naps

·       Keep to a routine – try to go to bed and get up at the same time each day

·       Relax before bedtime – listen to some quiet music or an audiobook, have a warm bath or practise a relaxation technique

·       Avoid screens – this includes watching TV or using your mobile before bed

·       Create the right conditions for sleep – make sure your bedroom is quiet, dark and a comfortable temperature

·       If you can’t get to sleep – get up for a bit rather than lying in bed. Read or listen to the radio until you start to feel tired, then go back to bed again

Complementary therapies

Some people use complementary therapies alongside their conventional breast cancer treatments.

Popular complementary therapies include:

·       Acupuncture

·       Acupressure and shiatsu

·       Aromatherapy

·       Healing and energy therapies

·       Hypnotherapy

·       Massage

·       Reflexology

Are they safe?

If you want to have a complementary therapy, speak to your treatment team first.

Your treatment team may advise you to avoid certain complementary therapies if there’s a chance they may affect how well your breast cancer treatment works.

Where to find a complementary therapist

Some hospitals, cancer support centres, and charities provide complementary therapies.

Your breast care nurse may be able to tell you more about this or give you a list of therapists in your area.

You may want to ask the therapist if they’ve worked with people diagnosed with breast cancer.

If you see a therapist, tell them about your breast cancer and its treatment.

RELATIONSHIPS, INTIMACY AND SEX

The end of treatment can be a difficult time. Your family and friends may expect things to go back to how they were before your diagnosis, but you may feel differently.

If you have a partner, they will also face a time of readjustment after your diagnosis and treatment.

Your relationships

Family and friends

You may find your relationships with friends and family change.

Friends or family members may have little experience of cancer and what it means, and some people may react in a way that makes you feel unsupported.

Talking openly about how you feel may make it easier for the people around you to respond to your needs.

Alternatively, you may choose not to talk about your breast cancer experience with those outside your immediate family or treatment team.

If you have children

After your treatment has finished, children may expect their ‘old’ mum back.

Make sure they have a realistic expectation about your energy levels, how involved you can be and where you may still need their help or understanding.

‘Most people expected that I would go back to normal but I didn’t know how to do that.’ – Beth

Continue talking with your children about your experience of breast cancer even after treatment has finished. Children tend to be more comfortable when they know what’s happening and what to expect.

You may want to talk with them about any fears they may have for you, your partner (if you have one) or their own future.

If you have a partner

You may find the roles within your relationship change.

Some partners become overly protective or feel they need to find out everything they can about your breast cancer. Others may cope by continuing with life as if nothing has happened.

They may have become more independent or taken on the role of carer during your treatment. Once treatment has finished your partner may have adjusted to their new role and want to continue this way. Or they may want to revert back to how things were before or move on.

However your partner responds, it’s important you both try to talk about concerns or fears.

Breast Cancer Now’s Someone Like Me service also supports partners of people with breast cancer.

‘The experience of having cancer has made our relationship stronger. We dealt with the treatment with humour throughout and supported each other through it.’ – Heather

Problems in your relationship

Breast cancer may not cause problems in your relationship, but it can aggravate existing ones.

Your diagnosis will almost certainly make you re-evaluate many things in your life, and this may include your relationship.

Some people decide they no longer want to stay in a relationship in which they are unhappy. Others may feel they need the security of their relationship even if it isn’t an entirely happy one.

Being able to talk openly about your situation can mean that together you’re able to find solutions.

This may be a gradual process but avoiding problems altogether can make them more difficult to resolve in the long term.

Sex and intimacy after treatment

How breast cancer affects you sexually will be unique to you.

Changes to your body may affect your confidence and feelings about yourself.

You might be anxious about your first sexual experience after your diagnosis, or worried things will not be the same as before.

These worries are normal. It can take time for your confidence to return and for you to feel comfortable being intimate with a partner or having sex again.

Tips for getting back to sex

·       Start afresh – try not to compare things now to how they were before you were diagnosed with breast cancer

·       Explore your body – it can be useful to explore your body on your own first to help you discover what kind of touch is still pleasant or where it’s painful

·       Use lubricants or moisturisers – using a vaginal lubricant or a vaginal moisturiser

·       Pelvic floor exercises – doing pelvic floor exercises increases blood flow to the vagina area, and can heighten sexual feelings and help relax these muscles

·       Don’t rush – take things slowly. Think about what kind and level of intimacy you feel comfortable with, and how much energy you have

·       Create a relaxed atmosphere – lighting, music or aromatherapy oils can help create a comfortable and sensual atmosphere

·       Wear what makes you comfortable – some women may feel uncomfortable naked and choose to wear nightwear. Others wear a prosthesis and bra to bed. Do whatever makes you feel more comfortable and relaxed

·       Masturbation (touching your body intimately) – sensual and genital touching, with a partner and on your own, can help remove anxiety associated with sex and can be a helpful starting point for people resuming sexual activity

‘It took a long time before I felt happy being naked in front of my husband. I also didn’t really feel in the mood for sex. It is challenging and painful, so we tend to find other ways of being intimate.’ – Nicola

Starting a new relationship

If you’re not in a relationship when you’re diagnosed with breast cancer, you may worry about dating again after your diagnosis.

A lot of women worry about when and how to tell a new partner that they have had breast cancer. There’s no set answer to this and you’ll probably just know if and when the time is right.

You might feel unsure about being intimate with a new partner and anxious about their reaction. It can help to discuss this with them first to try and take away some of the pressure.

Everyone is different and some people will take longer than others to feel comfortable sharing aspects of their diagnosis with a new partner, but it’s important to move at a pace that you’re comfortable with.

WORK AND FINANCES

Breast cancer can cause financial and practical issues during and after treatment.

You may have concerns about money, or you may be thinking about going back to work.

Going back to work

Returning to work can be a very positive step and may help some people move forward by regaining some normality.

However, many people feel disappointed and frustrated that it isn’t as easy as they imagined. This may be because of side effects of their treatment such as fatigue, or because they’re adjusting to life after a cancer diagnosis and the emotional changes this can bring.

It’s common to feel less confident at work, particularly if you’ve been off work for a while.

Planning your return

It can be helpful to discuss your plan to return to work with your treatment team, occupational health or human resources department and your manager.

Your employer is required to make reasonable adjustments during the period you’re returning to work.

For example, a phased return to work can help you gradually adjust to your normal working pattern.

There may be other adjustments that could benefit you. You can ask your treatment team what they’d recommend and share this with your employer.

Your rights at work

People with cancer are protected at work by the Equality Act 2010 in England, Scotland and Wales, and the Disability Discrimination Act 1995 in Northern Ireland.

According to the law, someone with cancer is classed as having a disability. The law protects employees from being discriminated against because of their disability.

This means you cannot be treated less favourably or lose your job because you have breast cancer.

Employers are required to make reasonable adjustments to help you continue to work, return to work, have time off for medical appointments or for continued treatment and recovery.

If you’re self-employed

If you’re self-employed you may worry that your diagnosis and treatment will affect your business.

Macmillan Cancer Support has useful information about self-employment and cancer on its website macmillan.org.uk

‘My employer and colleagues were very supportive but I found it very difficult going back to work initially.’ – Beth

‘I have now been back at work for a year and have good days and bad.’ – Saba

Financial help and benefits

You may be able to claim benefits or get other financial support.

For example, if you’re employed and have to take time off sick, you’ll probably be entitled to Statutory Sick Pay (SSP).

Employment and Support Allowance (ESA) is for people who cannot work because of illness or disability.

If you're out of work or on a low income, you may be able to claim Universal Credit.

You may also be able to get help with housing or childcare costs.

You can use an online benefits calculator to get an estimate of what benefits you could get. Visit gov.uk/benefits-calculators

Where to find information about benefits and financial support

As the benefits system can be confusing, specialist help with financial issues is available.

Welfare advisers

Some hospitals have welfare advisers, who can give you guidance on benefits.

Talk to someone in your treatment team or your GP who can refer you.

Macmillan Cancer Support

Macmillan Cancer Support produces a useful booklet called Help with the cost of cancer.

You can also speak to a Macmillan welfare rights adviser by calling 0808 808 00 00. They can help you get any benefits you’re entitled to.

Citizens Advice

Citizens Advice can tell you what local government assistance and benefits may be available to you, your family and carers. They can also help you fill out benefit claim forms.

Age UK

Age UK can offer advice on a wide range of benefits. Visit their website ageuk.org.uk or call 0800 169 2081.

GETTING SUPPORT

Everyone affected by breast cancer can turn to us for support. Whoever you are, and whatever your experience of breast cancer, our free services are always here for you. The whole way through.

You can find out more about Breast Cancer Now’s support services on our website breastcancernow.org

Moving Forward

Moving Forward gives you the tools to help you adjust to life beyond primary breast cancer treatment.

Helpline

Worried about breast cancer, or have a question about breast health? Our specialist team are ready to listen on our free Helpline.

Ask Our Nurses

Whenever you have a question, you can message our nurses for a clear, tailored reply to whatever’s on your mind.

Forum

Through our online Forum, we’re with you every step of the way – alongside thousands of people with real experience of breast cancer.

BECCA

With Becca, the breast cancer support app, we’re with you even when your treatment has finished.

Someone Like Me

You never have to face breast cancer alone. Find somebody who understands what you’re going through with Someone Like Me.

Other useful organisations

Menopausal symptoms

Menopause matters menopausematters.co.uk

Hair loss

Cancer Hair Care cancerhaircare.co.uk

My New Hair mynewhair.org

Lymphoedema

British Lymphology Society (BLS) thebls.com

The Lymphoedema Support Network lymphoedema.org

Osteoporosis

National Osteoporosis Society nos.org.uk

Relationships and sex

College of sexual and relationship therapists (COSRT) cosrt.org.uk

Relate relate.org.uk

Mental health and wellbeing

Anxiety UK anxietyuk.org

Maggie’s Centres maggies.org

Mental Health Foundation mentalhealth.org.uk

Mind mind.org.uk

Finance and benefits

Macmillan Cancer Support macmillan.org.uk

Citizens Advice citizensadvice.org.uk

Age UK ageuk.org.uk

HELP US TO HELP OTHERS

Breast Cancer Now is a charity that relies on voluntary donations and gifts in wills. If you have found this information helpful, please visit breastcancernow.org/give to support our vital care and research work.

ABOUT THIS LEAFLET

Moving Forward was written by Breast Cancer Now’s clinical specialists, and reviewed by healthcare professionals and people affected by breast conditions.

For a full list of the sources we used to research it: Email health-info@breastcancernow.org

You can order or download more copies from breastcancernow.org/publications

We welcome your feedback on this publication: Email health-info@breastcancernow.org

For a large print, Braille or audio CD version: Email health-info@breastcancernow.org

© Breast Cancer Now, May 2022. All rights reserved. Moving Forward is a UK registered trademark of Breast Cancer Now. BCC197, Edition 5, next planned review 2024.

Breast Cancer Now is a company limited by guarantee registered in England (9347608) and a charity registered in England and Wales (1160558), Scotland (SC045584) and Isle of Man (1200). Registered Office: Fifth Floor, Ibex House, 42–47 Minories, London EC3N 1DY.

Sarah

‘It’s OK not to feel normal at the end of treatment. Take one day at a time and try to focus on looking forward.’

Beth

‘The end of treatment was a very strange time. I had a sense of relief that the process was finally coming to an end, mixed with an overwhelming sense of loss, fear and isolation.’

Sarah

Table of Contents

MOVING FORWARD

- For people living with and beyond a diagnosis of breast cancer

- How to use this booklet

- Breast Cancer Now’s Moving Forward courses

- Fatigue

- Tips for managing fatigue

- Lymphoedema

- Reducing your risk of lymphoedema

- What to do if you notice any signs of infection

- Symptoms of lymphoedema

- Living with lymphoedema

- When hair grows back

- Haircare tips from Cancer Hair Care

- What to record

- Fatigue
- Pain
- Menopausal symptoms
- Physical activity

- Menopausal symptoms

- Tips for coping with hot flushes and night sweats

- Pain

- Lasting pain after breast surgery or lymph node removal

- Joint pain

- Bone health and osteoporosis

- Tips for healthy bones

- What is recurrence?

- Local recurrence

- Locally advanced breast cancer (sometimes called regional recurrence)

- Secondary (metastatic) breast cancer

- What are the chances of breast cancer returning?

- Can I reduce my risk of recurrence?

SIGNS TO BE AWARE OF

- Changes to the breast or chest area
- Possible signs of secondary breast cancer
- Coping with worries about recurrence
- Follow-up after treatment

COPING EMOTIONALLY

- You’ll probably have been through many different emotions since you were diagnosed with breast cancer.

- You may still get upset, angry, anxious or low after treatment has ended.

- This section looks at what you can do and who can help if you’re finding it hard to cope emotionally.

- Anxiety and stress

- Things you can try yourself

- Talking therapies

- Talking to other people

- Low mood and depression

- When to ask for support

- Treatment for depression

- Useful organisations

- Feeling isolated

- If you’re feeling isolated

- Feelings about your body after treatment

- Women’s feelings about their body after cancer

- Diet after breast cancer treatment

- If you’re concerned about your weight…

- Some treatments can affect bone health…

- There’s conflicting evidence about whether some herbal products are safe or effective…

- Can diet affect the risk of cancer coming back?

- Exercise after treatment

- Getting started and staying motivated

- Sleep

- Tips that might help you get a good night’s sleep

- Complementary therapies

- Are they safe?

- Where to find a complementary therapist

RELATIONSHIPS, INTIMACY AND SEX

- Your relationships

- Family and friends
- If you have children
- If you have a partner

- Sex and intimacy after treatment

- Tips for getting back to sex

- Starting a new relationship

WORK AND FINANCES

- Going back to work

- Planning your return

- Your rights at work

- If you’re self-employed

- Financial help and benefits

- Where to find information about benefits and financial support

GETTING SUPPORT

- Moving Forward
- Helpline
- Ask Our Nurses
- Forum
- BECCA
- Someone Like Me

- Other useful organisations

- Menopausal symptoms
- Hair loss
- Lymphoedema
- Osteoporosis
- Relationships and sex
- Mental health and wellbeing
- Finance and benefits

HELP US TO HELP OTHERS