How to make the best decisions about treatment

In this section
Key points to remember when choosing treatments
How involved do I want to be in making decisions about treatment?
What will happen if I don't have treatment?
What are my choices for treatment?
What are the risks and benefits of each treatment?
How do the risks and benefits balance out for me?
Do I know enough to make a decision?
How can I make a decision?

Every treatment has risks as well as benefits. The best treatment for you may be different from the best treatment for your friend or neighbour. We all have individual needs, and different things matter to each of us.

If you take part in deciding what treatment you have, you're likely to recover more quickly than if you don't take part in decisions.¹ It's even more important to take part in making decisions when doctors don't know which treatment is best for you.

Doctors should base their treatment decisions on what the research about your condition tells them. This is called practicing evidence-based medicine. This is a good way to practice medicine because it means your doctor is using evidence from medical studies that have looked at what happens to many thousands of people with your condition.

Key points to remember when choosing treatments

• Look into all your treatment options.
• Make sure you understand the risks and benefits of treatments.
• Make sure you understand how the risks and benefits will affect you personally.
• Make sure you have enough information to make a choice.
• Make sure you understand the risks and benefits of deciding not to have treatment.

You and your doctor should talk about your options for treatment and make a decision together about the best treatment for you. This is called shared decision making. Whenever possible, you should work with your doctor to decide on the best treatment for you.

There are several questions you should ask before deciding on any treatment.

How involved do I want to be in making decisions about treatment?

Research shows that some people want to take part in deciding what treatment they have.² Others don't want to be involved at all. But doctors often suggest one type of treatment when their patients would prefer another.² Your doctor may not always know what is important to you.

One study looked at what happened when men with prostate cancer who were thinking about having their prostates taken out were shown a video about men who had already had the operation.³ In the video, the men talked about the side effects of the operation. After the video, many of the men watching decided not to have surgery and to live with their symptoms.

What will happen if I don't have treatment?

Many common health problems, such as colds or headaches, go away on their own. Some health problems may get worse if you don't have treatment, such as diabetes and high blood pressure. You can ask your doctor what will happen if you don't have treatment, but sometimes your doctor won't know what will happen.

What are my choices for treatment?

Your doctor may suggest that you make changes to your lifestyle before trying medicine or other treatment. Lifestyle changes are things like exercising, eating a healthy diet and stopping smoking.

If you make changes to your lifestyle, you may be able to avoid taking medicine or having other treatment. For example, exercising more often and cutting back on how much alcohol you drink may help lower your blood pressure. If you don't want to exercise, it's better to be honest with yourself and your doctor. You may need to take medicine sooner, but if you know you will never exercise then it's best to say so.

Check out all your options

There may be several different treatments available. If your doctor prescribes one treatment, ask if there are others. Is having an operation a possibility? Are there other treatments besides medicine or surgery? You may be able to try treatments such as physiotherapy or acupuncture. It's good to know about all the treatments that might work. This will help you choose the treatment that is best for you.

Listen to other people

You may also want to hear about what other people with your condition have chosen to do and what their experience has been. But remember that just because something hasn't worked for a friend, it doesn't mean it won't work for you.

What are the risks and benefits of each treatment?

All treatments have both risks and benefits. Even aspirin and paracetamol can have side effects. You always need to balance the possible benefits with the possible risks.

Sometimes side effects don't show up in research studies and we only find out about them years after a medicine has become available. Even complementary or alternative treatments (such as herbal products or vitamins) can be harmful. Just because something is 'natural' does not necessarily mean it is safe.

How do the risks and benefits balance out for me?

What matters is whether you think that the benefits outweigh the risk of any side effects. Everyone is different. You need to decide what benefits and risks are important to you.

Here are some things to consider:

• Your personal situation: Does the treatment have side effects that will be tough for you to live with? For example, maybe you have small children and so you can't take tablets that make you sleepy.
• How you have to take the medicine: Maybe you don't like taking tablets and would prefer to try a skin patch.
• Your preferences for treatment and what you expect from it: Would you find it difficult to live with the risk of any serious side effects, even if the risk is small? Would you find it unbearable to lose your hair? Even if the treatment increased your chances of staying alive? What's the most important thing you want the treatment to do? If you have heart failure, for example, what is more important to you: to breathe more easily at night or to have less swelling around your ankles?
• How you cope with side effects: If you have high blood pressure, for example, you may decide that you can put up with the annoying dry cough caused by some medicines. For you, the benefit of the treatment (lowering your risk of heart disease and of having a stroke) might outweigh the side effect (the coughing).But many people with high blood pressure don't feel ill. It can be harder to put up with side effects from drugs when you don't feel ill. For example, if you feel well but your tablets make you dizzy, you may not want to put up with that side effect. But if you have a chest infection you may put up with the diarrhoea that's caused by the antibiotics you're taking. You should talk to your doctor before you stop taking any tablets. Sometimes another treatment may work just as well and have fewer side effects.
• How big the benefit may be: Treatments don't always cure you. You may decide that it's not worth taking a drug because the possible benefit is not big enough. You need to make sure you fully understand what the benefit of a treatment is before you stop it. If you have high blood pressure, you may think the tablets you take every day are a waste of time. But if you stop taking them, you may increase your risk of having a stroke or a heart attack.
• Your age: If you are 40 and you have osteoarthritis and your hip always hurts, you may want to think about having your hip replaced. If you have a hip replacement, your pain will go away and you'll be able to get around better. You won't have to take painkillers all the time. But your artificial hip may need replacing after 10 years to 20 years as it may wear out. You also have to weigh up the risks of the operation.
• Your sexual activity: You may decide that side effects that interfere with your sex life are especially important to you. Make sure you ask your doctor about sexual side effects if they are important. If you are a man, you may find that some medicines interfere with your erections. You may run the risk of having problems getting an erection or becoming incontinent after some operations, such as having your prostate removed when you have prostate cancer. Incontinence is the term doctors use when a person can't always control when they urinate. Your doctor should be able to talk freely about sexual issues with you. You certainly have the right to discuss them.

To learn more, see Weighing up the risks and benefits.

Do I know enough to make a decision?

To make well-informed decisions about benefits and risks, you need reliable information about how likely it is that a benefit or a side effect will happen to you.

If your doctor makes vague statements like, "The risks of this operation are small," then you need more information. What your doctor means by small may not be what you mean by small. Is there a 1 in 100 chance the surgery will cause a stroke or a 1 in 1,000 chance?

The way statistics like these are described to you can make a difference to how you feel about them. If you are told that a treatment will cut your risk of having a stroke by 50 percent (what doctors call a reduction in relative risk) this may sound great to you. But if it actually cuts your risk of having a stroke over the next five years from 2 percent to 1 percent (a reduction in absolute risk), then that doesn't sound quite so great.

Similarly, hearing that using a drug doubles your risk of developing leukaemia in 20 years may sound scary. But if your risk of getting leukaemia is small to start with (say, 2 people in 100,000 will get it), then even if the risk is doubled, it is still very small. However, if you are worried about any risk of getting leukaemia, even this risk may be too high for you.

For more information about risks, see Understanding risks.

How can I make a decision?

Let's look at an example. Say you are a 50-year-old woman who finds a lump in her breast. The lump is about the size of a cherry. You have two children and live in Newcastle.

Your mammogram (X-ray of your breast) shows that something isn't normal. You have a needle biopsy (in which a thin needle is inserted into your lump to remove some cells). The biopsy shows that you have cancer. Your surgeon recommends that you have your breast removed. Here are some of the questions you should ask.

What will happen if I don't have treatment?

There are only a few studies that show what happens if you don't have treatment for breast cancer. It would not be ethical for a doctor to do nothing for a woman with breast cancer because there is enough evidence to suggest that her cancer will get bigger.

What are my choices for treatment?

The main options for treatment are to remove the breast or to remove the cancer and leave most of the normal breast tissue behind. Removing the breast is called a mastectomy. The other type of surgery is called breast-conserving surgery.

After surgery, there are other treatment choices to consider depending on whether your breast cancer has spread to the lymph nodes in your armpit. If you have breast-conserving surgery, you may need radiotherapy afterwards.

What are the risks and benefits of each treatment?

If you were a 50-year-old woman with breast cancer, you would need to weigh up the following information about treatments:

• You will not live longer if you have your whole breast removed instead of having just the lump removed (breast-conserving surgery). Your breast cancer isn't more likely to come back if you have breast-conserving surgery.⁴
• If you keep your breast, there is a 90 percent chance that your breast will look good afterwards. But you will need radiotherapy after surgery. And the side effects from that can make you feel tired and sick. If you have children, for example, you need to know that radiotherapy can be exhausting and stressful.
• If you have breast-conserving surgery, there is a risk that not all of the cancer will be removed if just the lump is taken away. About 1 in 10 women need surgery again.
• If your whole breast is removed you can have breast reconstruction surgery to make a new breast that looks like the other one.

How do the risks and benefits balance out for me?

If you're a 50-year-old woman, and your lump is small, it can be removed without taking away your whole breast. This would leave your breast looking pretty good, although it may feel different to you.

If you want to keep your breast you need to know the risks and benefits of having just the lump removed. These risks may be greater if your lump is big because your surgeon will want to make sure he or she has removed the cancer plus some healthy tissue around it. This makes it less likely the cancer will grow back in that breast.

The research shows that keeping your breast makes no difference to how likely you are to survive your breast cancer. You are likely to live as long after an operation that just removes the cancer as you are after one that takes away your breast.

But apart from what the research shows, you should take into account what matters to you.

You may want to have your breast removed because it makes you feel safer. You may think you can cope better if you don't have to worry that another lump will grow in your breast. On the other hand, you may not want your breast removed because it may make you feel less attractive. You may worry that you'll never want to have sex again.

You should talk to your doctor and specialist nurse about the operation. You may also want to talk to other women who have had operations for breast cancer. They may help you make up your mind.