Finding out your treatment options

It is up to you how much information you have. Some people want a lot of information. Others only want a little.

Knowing more about the cancer can help you understand how it is affecting you. For example, it can help to know where it is and what type of cancer it is. It will also help to know about:

  • the aims of the treatment
  • how treatment will be given
  • what the possible side effects are.

Your healthcare team will be able to talk to you in detail about your treatment options.

If you are looking for information, think about what it is you really want to know, and what will help you make a decision about treatment. When looking for information, make sure it is accurate and up to date. You can find reliable information from: 

  • your healthcare team
  • cancer information organisations
  • trustworthy websites
  • other people who have been in a similar situation.

If you have any concerns or questions about a treatment, speak to your healthcare team.

What information do you need?

There are a number of ways of finding out more about the cancer and its treatment, and how these are likely to affect you.

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 only know a little.

Information about the cancer

To help you make a decision about cancer treatment, it is useful to know a bit about the cancer and how it is affecting you. This will help you understand your treatment options.

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 quickly the cancer may grow – this is its grade.

Information about the treatment

It can help to know what each treatment involves and what the differences are between the options you have been given. It is 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 do not have treatment
  • if there are other treatments available.

You should be able to get all this information from your healthcare team. They should 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 that you are ready to get on with the treatment. But you may want more information before making any decisions.

We have information about different cancer types and treatments that you might find useful. We also have some information in different languages and formats, including audio, eBooks, easy read, Braille, large print and translations. You can find out more information about other languages and formats or call our cancer support specialists on 0808 808 00 00.

What further information do you need?

Before looking for more information, think about what you really want to know. What do you need to help you decide about the treatment you have been offered? Is it more medical information, or do you want to know more about the side effects and practical aspects of the treatment?

For the first few days, I was unable to make decisions about treatment. But after taking the news in, I started to read about the type of cancer I had.

Sophia

For each treatment, I read through what was there and summarised it myself. Then underneath, I wrote down what was most important to me.

Richard


Reliable sources of information

There are many ways to find out about the treatments 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. They can tell you about the aims of the treatment and how it may affect you. It is a good idea to think about questions you may want to ask them.

Your healthcare team 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. Any member of the team can give you information. Remember that if your situation changes, information that was relevant to you before might not be now. Your healthcare team can tell you if other information would be useful in this case.

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 someone in your healthcare team.

You may also have a key worker. This person is your main point of contact at the hospital for support and information. Your key worker is often a clinical nurse specialist, but may be another health professional.

It can be helpful to take someone with you to your hospital appointments, such as a family member or friend. They could take notes of what you and the healthcare professional talk about, to help you remember it later. They could also ask any questions you find difficult.

After a hospital appointment, the doctor you saw will write to your GP. You are entitled to get a copy of this letter sent to you. Ask your hospital doctor if you would like a copy of the letter. Some doctors routinely send people copies of letters to the GP. If you would prefer not to have a copy, let the hospital doctor know.

Cancer information organisations

There are many organisations and charities that can give you information about cancer. 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.

Reliable websites

The internet can be a good source of information. Many people use it to look for health information. However, it is important to make sure that any website you look at is reliable and can be trusted to provide accurate information.

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:

Information Standard logo
Information Standard logo

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

  • Is the information regularly updated? Check when the information was last updated, edited or reviewed to make sure it is 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 will not do this.

If you do not feel confident using the internet, ask someone to help you. Family members, 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®), try to narrow your search to exactly what you are looking for. For example, if you are looking for information about the side effects of chemotherapy, include the name of the drug you have 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 are not sure. It may not be possible to save these pages if you are 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, macmillan.org.uk/information-and-support/treating/chemotherapy

If you are worried about anything you read online, 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.

Remember that everyone’s situation is different. Other people will not 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 when they had the treatment, how they felt and what helped them cope with any side effects.

Our Online 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.

Always check with your healthcare team if you have any doubts about information someone has given you.

Tips for talking to your doctor

Find out how to get the most out of your appointments with a GP or doctor.

About our cancer information videos

Tips for talking to your doctor

Find out how to get the most out of your appointments with a GP or doctor.

About our cancer information videos

I’m thankful for the people who gave me their opinion. I did not always take their advice, but looked at all the information and decided what was best for me.

Amira


Getting help finding more information

Your family and friends may want to help you find out more about the cancer and its treatment. It is a good idea to make sure 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 do not end up with lots of pages to read through yourself.

Advice on other treatment options

While looking for information, you may read about a treatment that you have not been offered. This may be because:

  • it is a very new treatment that is still being evaluated in a research trial
  • your hospital may not offer that particular treatment
  • the treatment might not be available on the NHS
  • the treatment might not be available 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 is 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.

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 are 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 family member or friend, or a counsellor.

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.

'Give us a call, we're here to listen.'

Zahida from our support line talks about how giving us a call can help.

More about our support line

'Give us a call, we're here to listen.'

Zahida from our support line talks about how giving us a call can help.

More about our support line

Treatment overview

Your doctor will discuss treatment options with you. These will depend on the phase of the leukaemia and your general health.

How treatment is planned

Your doctor will discuss treatment options with you. These will depend on the phase of the leukaemia and your general health.

Getting a second opinion

There are many reasons for wanting a second opinion about your treatment. Speak to your specialist or GP.

Making a decision

It is important to remember that the decision you make is the right one for you at the time.