About this ebook

This ebook has been written to help you make decisions about your treatment. It describes how you can find out about your treatment options and discusses some things that may help when making decisions.

You may find this information helpful if you:

- • have been given a choice of treatments and need to decide which one to have

- • are deciding whether to have treatment

- • are thinking about stopping treatment early

- • have been offered treatment as part of a research trial and are deciding whether to take part.

You may not have to make decisions about which treatment to choose. Sometimes there will only be one treatment option. But you may want to choose whether or not to go ahead with treatment.

We can’t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history.

We hope this information answers some of your questions and helps you to make decisions about your treatment. If you have any more questions, you can ask your doctor or nurse at the hospital where you’re having your treatment.

You may not need to read all the information in this ebook. You can use the list of contents to help you find the sections you think will help you make your decision.

In this ebook, we have included some comments from people who have made decisions about their treatment, which you might find helpful. Some are taken from the website healthtalk.org Some names have been changed.

If you’d like to talk about this information, call the Macmillan Support Line free on 0808 808 00 00, Monday–Friday, 9am–8pm. If you’re hard of hearing, you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. Or you can visit macmillan.org.uk

Turn to Other useful organisations for some useful addresses and websites. If you find this ebook helpful, you could pass it on to your family and friends. They may also want information to help them support you.

‘For the first few days, I wasn’t able to make any decisions about my treatment. But after taking the news in, I started to read about my specific kind of cancer.’ Sophia

Finding out about your treatment options

What information do you need?

How much information you need is up to you. Some people want to find out as much as they can about each treatment option. Others prefer to know just a little.

The doctors and specialist nurses treating you (your healthcare team) will encourage you to become involved in your care. Your healthcare team will support you and answer your questions. Then you can make decisions about your treatment together.

You may have to make more decisions about your treatment if your situation changes.

Information about the cancer

To help you make a decision about cancer treatment, it’s useful to know a bit about the cancer, how it’s affecting you and why you need treatment. This will help you understand your treatment options and make sense of other information.

Your healthcare team will usually be able to tell you:

- • where in the body the cancer started, such as the breast, bowel or prostate

- • what type of cancer it is

- • the size of the cancer and whether it has spread to other parts of the body – this is its stage

- • how fast-growing the cancer may be – this is its grade.

Information about the treatment

It can help to know what each treatment involves and how the options may differ. It’s useful to know:

- • the aims of the treatment

- • how the treatment will be given and how this may affect your day-to-day life

- • the possible side effects of the treatment

- • what will happen if you don’t have treatment

- • if there are other treatments available.

You should be able to get all the information from your healthcare team. They should also be able to answer your questions and give you some written information to take home. You may find that this is all you need and you’ll want to get on with the treatment. Or you may want more information before making a decision.

We have more information about different cancer types and treatments that you might find useful. Call our cancer support specialists on 0808 808 00 00 or visit macmillan.org.uk

What further information do you need?

Before you look for further information, think about what you really want to know. What would help you decide about the treatment options you’ve been offered? Do you need more medical information, or do you want to know more about the side effects and practical aspects of the treatment?

‘For each treatment that I was going to consider, I read through what was there and summarised it myself, and then underneath I wrote down what was most important for me.’ Richard

Reliable sources of information

There are many ways to find out about the treatment options you have been offered. Getting information from reliable sources means you can be sure it is accurate and up to date. You can get reliable information from:

- • your healthcare team

- • cancer information organisations

- • reliable websites

- • other people who have been in a similar situation.

Your healthcare team

Your doctors and nurses can talk with you in more detail about your treatment options, including the aims of the treatment and how it may affect you. It’s a good idea to think about questions to ask them. We have listed some suggestions. They can also help you understand other information you may have found, such as results from research trials and how this may relate to your situation. We have more information about what research trials are.

Although a team of doctors, nurses and other specialists work together to plan your treatment, you will usually have one main cancer doctor. This is often a consultant cancer specialist (oncologist) at the hospital, but may be another type of specialist. If you are not sure who your main doctor is, ask your healthcare team.

Any member of your healthcare team can give you information.

You might want to take someone with you to your hospital appointments, such as a relative or friend. You may also find it helpful to take notes during these appointments that you can read later.

Cancer information organisations

There are many organisations and charities that can give you cancer information. Many employ specialist nurses and some use volunteers who have experience of cancer. They can often answer your questions and give you detailed information.

Charities may have written information they can send you and most will have a website. There is a list of organisations at the end of this ebook.

Reliable websites

The internet can be a good source of information. Many people use it to look for health information. However, it’s important to make sure that any online information you use has come from a reliable source.

Some websites have logos to show that they have been certified as providers of up-to-date, high-quality information. For example, the Information Standard quality mark seen on Macmillan’s information:

To check whether a website is reliable, you should think about the following things:

- • Is the information regularly updated? Check when the information was last updated, edited or reviewed to make sure that it’s still accurate. You should be able to find the date on each page of information.

- • Is it clear who has written the information? A good website should tell you about the organisation that has made the pages or written the information.

- • Are there references? The website should list its sources of information. Check that the publication dates for the references are also up to date.

- • Is it a UK website? Information and advice may be different in other countries.

- • Is the website sponsored by a company? This may mean the information is biased towards that company’s products or services.

- • Is the website trying to sell you something? A good information website won’t do this.

If you have not used the internet before, ask someone to help you. Relatives, friends or staff in your local library should be able to help. Some hospitals have cancer information and support centres where you can use the internet. There should be someone available to help you.

If you use a search engine (such as Google® or Yahoo®), try to narrow your search to exactly what you’re looking for. For example, if you’re looking for information about the side effects of chemotherapy, include the name of the drug you’ve been offered. This will give you better results than searching for chemotherapy in general.

If you find a helpful website or some good information, you can save it as a ’favourite’ or ‘bookmark’ it, so that you can find it easily another time. Ask someone to show you how to do this if you’re not sure. It may not be possible to save these pages if you’re using a computer in a library or cancer support centre, so you could print the information or take notes instead. Remember to note down the web address (URL) of the page you are looking at. For example, www.macmillan.org.uk/information-and-support/treating/chemotherapy

If you are worried about anything you read during your internet search, talk to your healthcare team. They may be able to reassure you and answer any questions you have.

Other people who have been in a similar situation

Sometimes it can help to find out about other people’s experiences. You could do this through an online community or forum, or at a local support group. Always check with your healthcare team if you have any doubts about information you have been given.

Remember that everyone’s situation is different. Other people won’t be able to tell you which treatment will be more effective for you or exactly what side effects you will get. But they can tell you what it was like to have the treatment, how they felt and what helped them cope with any side effects.

Our Online Community at macmillan.org.uk/community is a place where you can chat to people in online forums, blog about your experiences and make friends. You can also find out about local support groups at macmillan.org.uk/selfhelpandsupport

‘I was thankful for the people who gave me their honest opinion. I didn’t necessarily take their advice but looked at all the information and then decided myself what was best for me.’ Amira

Getting help finding more information

Your family and friends may want to help you find out more about treatment. It’s a good idea to make sure that they know exactly what information you want, so they know what to look for. You could ask them to make notes on what they find so you don’t end up with lots of pages to read through yourself.

Advice on other treatment options

While doing your research, you may read about a treatment that you have not been offered. This may be because it’s a very new treatment that is still being evaluated in a research trial. Or your hospital may not offer that particular treatment, or it might not be available on the NHS or in the UK. If you have questions about a treatment you have not been offered, talk to your healthcare team. They can tell you if it’s an option for you. You may need to be referred for a second opinion or to a private hospital. This may cause a delay in starting your treatment.

We have more information about getting a second opinion on our website (macmillan.org.uk).

Getting support

Sometimes it can be difficult to focus on the treatment options you have been given. You may think that there is too much information and feel confused or overwhelmed. Depending on your situation and what information you’re looking for, you may find that some things you hear or read are upsetting. This can be difficult to cope with when you may already be feeling emotional and vulnerable. It may help to talk about your feelings with your healthcare team, a counsellor, or a relative or friend.

Our cancer support specialists are here to answer any questions you have, offer support or simply listen if you need a chat. Call us free on 0808 808 00 00.

Aims of treatment

Treatments aim to:

- • remove a cancer

- • slow down or stabilise the growth of a cancer

- • relieve symptoms

- • make another treatment possible or more effective

- • reduce the risk of the cancer coming back.

If two or more treatments are likely to work equally well, your decision may be based on how the different treatments will affect you (see Side effects of treatment).

It’s important to remember that everyone responds differently to treatment. No one can guarantee that a treatment will work for you.

Side effects of treatment

Most cancer treatments have side effects. It’s important to discuss your treatment fully with your healthcare team so you’re aware of any that might affect you.

Side effects usually improve when treatment finishes. But sometimes they can be long-term or permanent.

Some side effects will have very little impact on your everyday life, while others may have more. For example, you may feel more tired than usual but can manage to continue working. But if you lose your hair, your feelings about your appearance and body image may be greatly affected.

You’ll need to think about a number of things when deciding about treatment. These include possible side effects and the impact on your social life, work, finances and family.

Your day-to-day life

Having treatment is likely to affect your day-to-day life. For example, you may have to go into hospital for an operation and need time to recover. Or you may have to travel to hospital regularly for radiotherapy or chemotherapy treatment. You may be unable to work or continue your usual social life for a while. You may have to cancel any special events you have planned, such as weddings or holidays.

You may be happy to delay your social life for a while, so you can have your treatment and then recover from it. But you may be very busy or have some events planned that make it more difficult for you to do this.

Your healthcare team should be able to give you an idea of how long your treatment will last and how often you will need to visit the hospital. This may help you choose a treatment that best suits you.

It’s sometimes possible to plan treatment so that you can continue with your normal routine. Before deciding which treatment to have, ask your healthcare team whether the treatment can be planned to fit around your schedule. This will not always be possible, but it’s worth asking.

If you can’t work because of treatment, you may find that you struggle to cope financially. Your doctor or nurse can refer you to a social worker or benefits adviser who can tell you about benefits and other sources of support. Your employer may also be able to help, so it’s worth talking to your manager or human resources department.

If you’re struggling to cope financially, you can call our financial guides and welfare advisers for free on 0808 808 00 00.

‘I didn’t particularly want the treatment on the day of the week that was specified. We eventually came to a compromise, which I think was great because it made me feel as if I was having a little bit of input into my life. And then things were a lot better for me.’ Rashida

Taking part in a research trial

You may be asked to take part in a research trial. Trials help improve knowledge about cancer and treatments. They may be done to develop new treatments, improve quality of life or to find the most cost-effective treatment.

Information about the trial

If you have been asked to take part in a trial, it can help to know why it is being done and what this may mean for you if you take part.

Often, a trial will compare the standard treatment for your situation with a new treatment that the researchers think may be better. You should talk to your healthcare team about the possible treatments in the trial and how they may affect you. Knowing about the different treatments will help you decide if you want to take part or to have the standard treatment instead.

You can ask the doctor or nurse who tells you about the trial any initial questions you have. They will often give you written information. They’ll probably introduce you to a research nurse, who will be able to answer any more questions you have.

Usually, several hospitals take part in these trials. It’s important to know that some treatments look promising at first, but may later be found to be less effective than existing treatments. Or they may have side effects that outweigh the benefits.

Our booklet Understanding cancer research trials (clinical trials) has more information. We can send you a free copy – call us on 0808 808 00 00.

The benefits and disadvantages of taking part in a trial

You will be carefully monitored during and after the trial. You may be asked extra questions about how you are feeling and your general quality of life. The benefit of this extra attention is that any changes in your health may be noticed earlier than if you were not in a trial. These changes may or may not be related to the treatment you are having.

You may need to go to your hospital or family doctor (GP) more often than normal. Sometimes you may have to travel to a different hospital. Ask how many extra visits will be needed and think about whether you are willing to do this. Remember that hospital appointments can be tiring and may cost you more money for travel and parking. You can ask if the research organisation will pay for your travel costs and how to claim for any extra expenses.

If you decide not to take part in a trial, your decision will be respected and you don’t have to give a reason. The hospital staff won’t treat you any differently and you will be offered the standard treatment for your situation. If you do decide to take part, you can leave the trial at any time.

Finding a suitable trial

If you have not been offered a trial, it may be because there aren’t any suitable for you. Talk to your healthcare team about this. They should be able to tell you about trials in your area, and may know of other trials that might be suitable. Not all hospitals have the facilities or expertise to take part in some trials, so you may have to travel to a different hospital. Ask your healthcare team if there are any suitable trials for you.

Questions you can ask your healthcare team

Before you meet with someone from your healthcare team to talk about treatment, think about what you would like to know. Write down your questions for them so you don’t forget any and leave space to write down their answers. It may help to have a relative or friend with you to make notes.

‘If you don’t feel comfortable with the treatments your healthcare team are offering you, ask why they feel that is the appropriate treatment. Are there any alternatives to that treatment? What will happen if you don’t have that treatment? Don’t be afraid to ask questions.’ Colin

Suggested questions

Here are some questions that may help you make your decision. You will probably have others.

- • What does the treatment or procedure involve?

- • What are the benefits?

- • What are the side effects?

- • What can help with the side effects?

- • Are there any risks?

- • How long will the treatment last?

- • How will treatment affect my everyday life during and after treatment (for example work, social life, sex life and finances)?

- • How long will it take me to recover?

- • How will I be monitored during and after treatment?

- • What happens if I don’t have any treatment?

- • What if I change my mind?

We have more information about questions you can ask in our leaflet Ask about your cancer treatment. We can send you a free copy – call us on 0808 808 00 00.

Helping you decide

Who can help you decide?

Talking can help you sort out your thoughts and feelings before making a decision. You may have a specialist nurse or research nurse at the hospital you can talk to. You could also talk to your GP or one of our cancer support specialists.

Some people have a close circle of family and friends who they can talk things through with.

Sometimes an online forum or support group may be helpful. You may be able to learn more from other people’s experiences.

Remember that every person, and every cancer, is unique. What may have been the right choice for someone else may not be the best thing for you. Always check with your healthcare team if you have any doubts about information you have been given.

Our cancer support specialists are here to answer any questions you have, offer support or simply listen if you need a chat. Call us free on 0808 808 00 00.

‘We turned to Macmillan and called them up for some help with our decision. They gave us a lot of information and were really helpful.’ Louise

Dealing with uncertainty

Feeling that we have some control over our lives gives us a sense of security and allows us to enjoy the things we do. It’s natural to want to know what’s likely to happen to us next, so that we can make plans for the future.

There is often some uncertainty when making treatment decisions. Sometimes there isn’t a clear right or wrong answer. The doctors may not be able to say for sure if the treatment will work and how it may affect you.

Uncertainty can be one of the hardest things to deal with. It can make you feel angry, irritable and frightened, which can sometimes cause tension with people around you.

It can help to talk to family, friends and healthcare professionals about how you feel. Some people find it useful to talk about things with a counsellor. Your local cancer information centre or cancer support group may have a counsellor who you can talk to. Or your doctors and nurses can help you find one.

Statistics

Your doctor may use statistics to tell you what they know about a treatment. Statistics are a way of presenting information using numbers. We come across statistics in many areas of daily life, not just in healthcare. They can be useful when making decisions about treatment.

For example, information about a drug may include statistics on:

- • how effective it is

- • possible side effects

- • how severe the side effects are

- • how many people are affected by the side effects.

It’s important to remember that statistics are based on large numbers of people. They can’t tell you what is going to happen to one individual, but they can give you an idea of how likely it is.

For example, some drugs can cause nausea (feeling sick) in some people. If a drug you’re offered causes nausea in 80 out of 100 people (80%), you don’t know exactly whether you will feel sick or not, but it is quite likely. If you’re offered a different drug that causes nausea in just 30 out of 100 people (30%), it’s a lot less likely that you will feel sick.

Understanding statistics

Statistics can be complicated and difficult to understand.

You may feel that they make it more difficult for you to make your decision, but the following pages aim to explain the different ways that statistics can be helpful.

If your doctor uses statistics that confuse you, ask them to make the information simpler. It may help if they write the statistics down. Then you can look at them later, or ask a relative or friend to go through them with you.

There are different ways of showing statistics. These include:

- • percentages

- • bar and pie charts

- • other diagrams.

Ways of presenting information

The following example shows how information can be presented in different ways. This is just an example and does not refer to any real medicine or research. It shows that you should consider both how effective the treatment is and its possible side effects when making your decision.

A doctor talks to someone who is about to start chemotherapy about a new drug which may help prevent hair loss.

Before taking the drug, the person wants to know how well the drug works to stop hair loss.

The doctor explains the results of a study. Of the 100 people who took the new drug:

- • 10 people had no hair loss.

- • 23 people had a little hair loss.

- • 37 people had a lot of hair loss and had to get a wig.

- • 30 people had total hair loss and had to get a wig.

In total, the new drug slowed down or stopped complete hair loss for 70 people (10+23+37), but 67 of the 100 people who took the drug had to get a wig.

The numbers in each group can be shown in a diagram to make this clearer.

Pie chart showing how many people had hair loss and whether they needed a wig

The person also wants to know about the possible side effects of the drug and how many people are affected.

The doctor tells them that side effects included:

- • headaches

- • feeling tired

- • a sore throat.

Of the 100 people in the study:

- • 50 people had headaches = 50%

- • 80 people felt tired = 80%

- • 25 people had a sore throat = 25%.

Some people had rarer side effects:

- • 1 person had an allergic reaction = 1%

- • 2 people had very itchy skin = 2%

- • 4 people had pain in their stomach = 4%.

Some people had no side effects at all, while others had a few different side effects.

Bar chart showing the possible side effects of the drug and how many people were affected

The person also wants to know more about how people’s lives were affected by the side effects. The doctor tells them:

- • Of the 100 people who took the new drug, most (72 people) had mild or no side effects.

- • 23 people had side effects that affected their day-to-day lives.

- • Only 5 people had side effects so severe that they had to stop taking the medicine. The person who had the allergic reaction and the people who had a stomach ache didn’t have the drug again.

This information can be shown in a ‘smiley face’ diagram.

‘Smiley face’ diagram showing how people’s lives were affected by the side effects

There are many different ways of showing information. Remember that it’s fine to ask for explanations to be repeated if there’s something you don’t understand.

Benefit and risk

Healthcare professionals sometimes explain things using the terms benefit and risk.

Benefit

A benefit is something good or helpful that happens as a result of doing (or not doing) something. For example, a benefit of a healthy diet is that you’re less likely to be overweight and less likely to develop diseases such as heart disease, diabetes and some cancers.

A benefit of cancer treatment may be that the cancer is cured or controlled for some time. A benefit can also be that the situation does not get worse. For example, the cancer may stay the same size or grow at a slower rate.

Risk

Risk is the chance that something harmful or unwanted may happen as the result of a procedure, test or treatment. Or it may be the result of not doing anything.

Life experiences may affect our view of risk, the decisions we make and the action we take. Our views of risk are likely to change at different times in our lives depending on our circumstances.

For example, if you know someone who has had lots of side effects from having chemotherapy, your view about the risks of chemotherapy is likely to be different from someone who doesn’t know anyone who has had it. These experiences can influence your behaviour and may make you less likely to have chemotherapy.

In this example, it’s important to remember that there are lots of different chemotherapy drugs and that not all of them cause lots of side effects. There are also some very good drugs to help prevent or reduce side effects.

Describing risk

Risk can be described in different ways. Healthcare professionals often describe situations as low risk or high risk. These words can mean different things to different people. Using numbers can sometimes be clearer.

Numbers can be shown in different ways. A doctor may describe risk using percentages (%), fractions or likelihood.

For example, 25 out of 100 can be described as:

- • 25%

- • 25 in 100

- • 0.25

- • ¼

Types of risk

When describing risk, research papers and doctors sometimes talk about absolute risk and relative risk.

Absolute risk is the likelihood of something happening to a person. For example, the risk of developing a certain illness at some point in your life may be 1 in 10. This can also be described as a 10% risk.

Relative risk compares risk in two different groups of people. An example would be the risk of developing lung cancer in smokers and non-smokers.

The following example may help explain absolute risk and relative risk. This is just an example and does not refer to any real medicine or research.

The doctor tells you the following:

- • You have a 6 in 100 (6%) risk of developing disease A at some point in your life.

- • Research shows that if you take drug X, your risk changes from 6 in 100 (6%) to 3 in 100 (3%).

The reduction in risk can be described as the following:

- • The absolute risk of developing the disease without drug X is 6%, but with drug X it is 3%. So the absolute risk reduction is 3%.

- • In this example, the risk has been reduced by half (from 6 to 3). A half can also be described as 50%, so the risk has been reduced by 50%. This is the relative risk reduction.

Relative risk reduction often sounds more dramatic than the absolute risk reduction. It is used more often to describe how effective a treatment is.

Risk and how it relates to you can sometimes be difficult to understand. Ask your healthcare team to explain things in more detail if you’re not sure.

‘Don’t agree to anything until you’re ready and make yourself ready by whatever means you need. It might be counselling, research or talking to friends.’ Louise

Making your decision about treatment

Making your decision

It can be difficult to make a decision about something that is very important. You may feel overwhelmed by all the information you have been given or may be influenced by relatives and friends.

It may help to think about how you approached big decisions in the past. Are you guided by your first impressions and instincts? Or do you usually need to think things through for a long time?

When you have thought about all the information you have, you may find it helpful to put it aside and try not to think about it for a few days. If you can, do something different to distract you from making the decision. If you need to decide fairly quickly, it may help to get a good night’s sleep and then make the decision the next day. Giving yourself a short break before making the decision may help you look at all the information with a fresh approach.

It’s your decision

It’s important to do what is right for you and not what you think other people want you to do. It’s easy to be influenced by the opinions of others, especially when they are very close to you. But you are the one who will be having the treatment, and you need to be sure that you have made the right decision for you at the time.

If your relatives or friends think that you’re making the wrong decision, explain your reasons to them. They may be happy to accept your decision once they know your reasons, but they may also have important points that you have not considered.

Help with making a decision

There are things that you can do to help you make a decision.

Make a list

To help you make your decision, you could write a list of the benefits and disadvantages of the treatment you’ve been offered.

Try to think about:

- • the aim of the treatment

- • how successful the treatment is likely to be

- • the possible side effects

- • how often you’ll need to go to the hospital and for how long

- • the effects on your family and social life

- • the effects on your work and finances.

These are just examples. It’s important to take time to make your decision. This will be hard if doctors want to start treatment soon. However, it’s important that you can think about the information you have and ask more questions if you need to.

To help you make your decision, you might find these five steps useful:

Making your decision

If you can’t decide

Some people find it very difficult to make a decision. You may feel that you want your specialist to make the decision for you. If you are having trouble deciding, talk to your family and friends. They may be able to simplify things for you. You can also make an appointment to see your doctor or specialist nurse to talk to them again. Your healthcare team may suggest a decision aid to guide you through your choices. Your doctor or nurse can talk to you about these.

‘Find out all the information you can, ask as many questions as you can, and do make the decision that’s right for you.’ Wendy

How will you know if you’ve made the right choice?

There is no right or wrong decision. People have different priorities, concerns and circumstances that will mean they make different choices.

The most important thing to remember is that the decision you make is the right one for you at the time. No one can say exactly what will happen in the future. It’s likely that there will always be some uncertainty.

You may find you change your mind over time. How you feel now may be different from how you felt a few weeks or months ago. It can also differ from how you may feel in the future.

As your situation changes, your choices may change too. Your healthcare team will support you and will respect the choices you make.

If the cancer comes back after having the treatment you chose, you should not blame yourself. It’s possible that the cancer would have come back if you had chosen another treatment option. It’s important to remember that you made the right decision at the time for all the right reasons, using the information available to you.

Further information

About our information

We provide expert, up-to-date information about cancer. And all our information is free for everyone.

Order what you need

You may want to order some leaflets or booklets, or download more ebooks like this one. Visit be.macmillan.org.uk or call us on 0808 808 00 00.

We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends.

All of our information is also available online at macmillan.org.uk/cancerinformation There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals.

Other formats

We also provide information in different languages and formats, including:

- • audiobooks

- • Braille

- • British Sign Language

- • Easy Read booklets

- • large print

- • translations.

Find out more at macmillan.org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@macmillan.org.uk or call us on 0808 808 00 00.

Help us improve our information

We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information.

We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.

If you’d like to hear more about becoming a reviewer, email reviewing@macmillan.org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information.

Other ways we can help you

At Macmillan, we know how a cancer diagnosis can affect everything, and we’re here to support you. No one should face cancer alone.

Talk to us

If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help.

Macmillan Support Line

Our free, confidential phone line is open Monday–Friday, 9am–8pm. Our cancer support specialists can:

- • help with any medical questions you have about your cancer or treatment

- • help you access benefits and give you financial advice

- • be there to listen if you need someone to talk to

- • tell you about services that can help you in your area.

Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous

Information centres

Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face.

Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence.

Find your nearest centre at macmillan.org.uk/informationcentres or call us on 0808 808 00 00.

Talk to others

No one knows more about the impact cancer can have on your life than those who have been through it themselves. That’s why we help to bring people together in their communities and online.

Support groups

Whether you are someone living with cancer or a carer, we can help you find support in your local area, so you can speak face to face with people who understand. Find out about support groups in your area by calling us or by visiting macmillan.org.uk/selfhelpandsupport

Online community

Thousands of people use our online community to make friends, blog about their experiences and join groups to meet other people going through the same things. You can access it any time of day or night. Share your experiences, ask questions, or just read through people’s posts at macmillan.org.uk/community

The Macmillan healthcare team

Our nurses, doctors and other health and social care professionals give expert care and support to individuals and their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you.

Help with money worries

Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help.

Financial guidance

Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings.

Help accessing benefits

Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits.

Macmillan Grants

Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break.

Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area.

Visit macmillan.org.uk/financialsupport to find out more about how we can help you with your finances.

Help with work and cancer

Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work

Macmillan’s My Organiser app

This free mobile app can help you manage your treatment, from appointment times and contact details, to reminders for when to take your medication. Search ‘My Organiser’ on the Apple App Store or Google Play on your phone.

Other useful organisations

There are lots of other organisations that can give you information or support.

NHS Shared Decision Making

sdm.rightcare.nhs.uk

Designed to help patients compare options and make difficult decisions about their treatments. Each decision aid allows you to create a personal record of your journey by building a summary of the pages you visit and the answers to all the questions asked.

General cancer support organisations

Cancer Black Care

79 Acton Lane, London NW10 8UT

Tel 020 8961 4151

Email info@cancerblackcare.org.uk

www.cancerblackcare.org.uk

Offers information and support for people with cancer from ethnic communities, their friends, carers and families.

Cancer Focus Northern Ireland

40–44 Eglantine Avenue, Belfast BT9 6DX

Helpline 0800 783 3339 (Mon–Fri, 9am–1pm)

Email hello@cancerfocusni.org

www.cancerfocusni.org

Offers a variety of services to people affected by cancer, including a free helpline, counselling and links to local support groups.

Cancer Research UK

Angel Building, 407 St John Street, London EC1V 4AD

Tel 0300 123 1022

www.cancerhelp.org.uk

Has patient information on all types of cancer and has a clinical trials database.

Cancer Support Scotland

The Calman Centre, 75 Shelley Road, Glasgow G12 0ZE

Tel 0800 652 4531

Email info@cancersupportscotland.org

www.cancersupportscotland.org

Runs cancer support groups throughout Scotland. Also offers free complementary therapies and counselling to anyone affected by cancer.

Maggie’s Centres

The Gatehouse, 10 Dumbarton Road, Glasgow, G11 6PA

Tel 0300 123 1801

Email enquiries@maggiescentres.org

www.maggiescentres.org

Provides information about cancer, benefits advice, and emotional or psychological support.

Teenage Cancer Trust

3rd Floor, 93 Newman Street, London W1T 3EZ

Tel 020 7612 0370

Email hello@teenagecancertrust.org

www.teenagecancertrust.org

A charity devoted to improving the lives of teenagers and young adults with cancer. Runs a support network for young people with cancer, their friends and families.

Tenovus

Head Office, Gleider House, Ty Glas Road, Cardiff CF14 5BD

Helpline 0808 808 1010 (Mon–Sun, 8am–8pm)

Email info@tenovuscancercare.org.uk

www.tenovus.org.uk

Aims to help everyone get equal access to cancer treatment and support. Funds research and provides support such as mobile cancer support units, a free helpline, an ‘Ask the nurse’ service on the website and benefits advice.

Disclaimer, thanks and sources

Disclaimer

We make every effort to ensure that the information we provide is accurate and up-to-date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photos are of models.

Thanks

This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our Chief Medical Editor, Dr Tim Iveson, Macmillan Consultant Medical Oncologist. With thanks to: Dr Jenny Bird, Consultant Haematologist; Dr Belinda Hacking, Consultant Clinical Psychologist; Alasdair Innes, Advanced Nurse Practitioner, Urology; Dr Robert Laing, Consultant Clinical Oncologist; and Kathleen Mais, Nurse Clinician Head and Neck Oncology. Thanks also to the people affected by cancer who reviewed this edition, and those who shared their stories.

Sources

We’ve listed a sample of the sources used in this publication below. If you’d like further information about the sources we use, please contact us at bookletfeedback@macmillan.org.uk

General Medical Council (GMC). Consent: patients and doctors making decisions together [Online]. 2008. Available from: www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_index.asp (accessed July 2016).

National Institute for Health and Care Excellence (NICE). Patient experience in adult NHS services: improving the experience of care for people using adult NHS services [Online]. 2012. CG138. Available from: www.nice.org.uk/guidance/CG138 (accessed July 2016).

Stacey D et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews [Online]. 2014. 1 (CD001431). DOI: 10.1002/14651858.CD001431.pub4 (accessed July 2016).

Can you do something to help?

We hope this ebook has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way.

We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team.

Share your cancer experience

Support people living with cancer by telling your story, online, in the media or face to face.

Campaign for change

We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care.

Help someone in your community

A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand?

Raise money

Whatever you like doing you can raise money to help. Take part in one of our events or create your own.

Give money

Big or small, every penny helps.

Call us to find out more 0300 1000 200

macmillan.org.uk/getinvolved