Understanding your treatment options

There is often more than 1 approach to treatment or care. Your cancer team will help you to understand the benefits and risks of different options. This helps you to think about your choices and make the best decision for you.

Sometimes it can help to tell your doctor what is important to you. This might be linked to:

• your personal values
• your cultural, spiritual or religious beliefs
• something unique to you.

You do not have to talk to your doctor about these things. But it might help your healthcare team to understand the treatment you would prefer, and what matters to you. If you have had negative experiences of healthcare in the past, you might feel uncertain about the advice you get. You might want more time to think, or want a second opinion (see below). Try to talk to your doctor or nurse to understand the reasons for their advice.

It is up to you how much information you need to make treatment decisions. Some people want to find out as much as possible about the cancer and each treatment option. Others prefer to know less.

We have more information about questions to ask your healthcare team.

You might want more information from your healthcare team about:

• where the cancer first started – the primary site
• the type of cancer it is – some cancers have different sub-types
• its stage – the size of the cancer and if it has spread
• its grade – how quickly the cancer may grow, based on how the cells look
• any genetic changes in the cancer cells that tell doctors which drugs are most likely to help.

You need information to help you think about the benefits and risks of each treatment option. For example:

• if the treatment can cure the cancer, or help you live longer
• whether there are other treatment options available
• possible side effects of treatment, either short-term or long-term
• how treatments affect your everyday life
• what will happen if you do not have treatment.

This can be a lot to think about. Your healthcare team can usually give you written information to read in your own time. They can also answer any questions you have about each treatment option.

Different treatments have different side effects. This might affect your decision about which treatment to have. It is important to understand the possible short-term and long-term side effects. Your cancer team can explain these to you.

Side effects usually improve after treatment finishes. But some side effects might be permanent. These are called long-term side effect. Or they might develop months or years after treatment. These are called late effects.

For example, you might want to know if a treatment:

• causes permanent infertility
• affects sex and intimacy
• is likely to cause changes to how your bladder or bowel work.

It is important to have these conversations with your cancer team before treatment starts. If you have treatment to preserve your fertility, this needs to start before you begin cancer treatment.

Talk to your team about balancing the possible benefits and side effects of the treatment.

The effects of treatment on everyday life are different for everyone. For example, some people might be able to continue working, while for others this will not be possible.

You might have an operation that means weeks or longer in hospital to recover. Or you may have to travel to hospital regularly for radiotherapy or chemotherapy. This can take time and make you more tired.

You might want to know how different treatments could affect your everyday life. For example, which treatment:

• has side effects that are least likely to affect you
• involves the least time in hospital
• has the smallest effect on your home and social life
• allows you to carry on working for financial reasons.

A prognosis gives an idea about whether the cancer can be cured and what might happen in the future. Your cancer doctor is the best person to answer questions about your prognosis.

Not everyone wants detailed information on prognosis, but some people find it helpful in making treatment decisions. Asking about your prognosis may be difficult, and sometimes the answer might be upsetting. It is important to think about how much you want to know first, before asking for a prognosis.

Doctors sometimes mention statistics when describing treatment options. They can explain how statistics relate to your treatment options. This may be a useful way to compare certain treatments. But it is important to remember that statistics cannot predict how well a treatment will work for you. They can sometimes be difficult to understand.

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 specialist doctor, nurse or other members of your healthcare team
• cancer information organisations
• recommended websites
• other people who have been in a similar situation.

Family and friends may want to help you find out more about the cancer and its treatment. This can be helpful if you are feeling tired or already have enough to think about. Tell them exactly what information you want. You could ask them to make notes or to print off the most useful information for you.

Different healthcare professionals make up your cancer team. A team of doctors, nurses and other healthcare professionals work together to plan your treatment. But you will usually have 1 main cancer doctor. This may be a specialist surgeon or a consultant cancer specialist (oncologist). Or it could be a doctor who specialises in cancers of the blood (haematologist).

You may meet more than 1 specialist, depending on the type of cancer you have. If you are not sure who your main doctor is, ask someone in your healthcare team.

You may also have a specialist nurse who gives you information and support. This might be your key worker, who is your main point of contact at the hospital for support and information. Other healthcare professionals from the cancer team, such as radiographers, may give you information and support through your treatment.

Your doctors and nurses can help you to understand other information you may have found. For example, they can explain the results of research trials and how they might relate to your situation.

After a hospital appointment, your cancer doctor will write to your GP. If you would like a copy of this letter as well, ask your cancer doctor. Some doctors routinely send copies of letters to the GP. If you would prefer not to have a copy, let them know.

There are many organisations and charities that can give you information about cancer. They may have specialist nurses who can give you information. Or they may have volunteers with experience of cancer who you can talk to. Organisations often have a website and can send you written information.

The internet can be a good source of health information. But it is important to make sure any website you use is reliable and provides accurate information. You could ask your team which websites they recommend.

Some websites have logos to show they have been certified as providers of up-to-date, high-quality information. Look for the Patient Information Forum (PIF) TICK on leaflets, websites, videos or apps. It shows that the health information has been through a professional and robust production process. You can find the PIF quality mark on Macmillan’s information and at the bottom of this page.

To check if a website is reliable, think about the following:

• What does the website address end in? This can give you an idea of who is providing the information. For example:
  • charity and non-profit websites often end in .org.uk or .org
  • UK government websites end in gov.uk
  • academic institutions end in ac.uk
• Has it got a PIF TICK or a similar quality mark?
• Is it a UK website? Information and advice may be different in other countries.
• Is the information regularly updated? Medical information changes over time. Check when it was last reviewed to make sure it is still accurate. You should be able to find this date on each page, and the date the information will be reviewed next. PIF TICK guidelines recommend information should be reviewed at least every 3 years.
• Is it clear who has written the information? A good website should tell you about who has produced the information. For example, is it written or approved by healthcare professionals?
• Does the page include sources of evidence (references) for the information? References should be listed, and up to date.
• Is the website sponsored by a company or trying to sell you something? This might mean the information is biased towards that company’s products or services.

We have more information about how we produce our cancer information.

Some hospitals have cancer information and support centres where you can use the internet and talk to someone who can help you.

Macmillan has different support centres in hospitals and libraries across the UK.

Save helpful websites as a favourite, or bookmark it so you can find it easily. If you are using a computer in a library or cancer support centre, it may not be possible to save these pages. 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 cancer doctor or specialist nurse. They can answer questions and talk to you about your situation.

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

• use plain English
• explain medical words
• use short sentences
• use illustrations to explain text
• structure the information clearly
• make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.