Finding out your treatment options

You may have been given a choice of cancer treatments and need to decide which one to have. Or you may need to choose whether or not to have treatment. Knowing about your treatment options and what they each involve will help you make your decision. Your doctors and nurses will encourage you to become involved in your care so you can make decisions together.

Knowing more about the cancer can help you understand how it is affecting you. It will also help to know about the aims of the treatment, how it will be given and what the possible side effects are. Your healthcare team will be able to talk to you in detail about your treatment options.

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?

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 is useful to know a bit about the cancer, how it is 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 is useful to know:

  • the aims of the treatment (see below)
  • how the treatment will be given and how this may affect your day-to-day life
  • the possible side effects of the treatment (see below)
  • what will happen if you do not 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 will want to get on with the treatment. Or you may want more information before making a decision.

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 have 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. Then 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 is a good idea to think about questions to ask them. 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. 

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. You can use our search tool to find other useful organisations.

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 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 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® or Yahoo®), 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, 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 is a place where you can chat to people in online forums, blog about your experiences and make friends. We also have information to help you find out about local support groups.

I was thankful for people's honest opinions. 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 is 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 is 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 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 counsellor, or a family member 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.

It is 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 is important to discuss your treatment fully with your healthcare team so you are 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 will 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 is 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 is worth asking.

If you cannot 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 is worth talking to your manager or human resources department.

If you are 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 that was specified, so we came to a compromise. This made me feel as if I was having more input.

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 will 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 is 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.

We have further information available about trials. We also have a booklet called Understanding cancer research trials (clinical trials). To order this for free, 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 do not have to give a reason. The hospital staff will not 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.

Back to Coming to your decision

Making your decision

If  you’re struggling to come to a decision about treatment, try following these five steps.