Advantages and drawbacks of taking part in a clinical trial

This page discusses the advantages and drawbacks of being in a trial. There is information about                                                    

Advantages

We can't necessarily assume that a new treatment is better than standard treatment. We don't know whether it is, which is why the new treatment is being tested in the first place. But there are advantages to taking part in a trial, including

• You may get a new treatment that works, that you could not get outside the trial
• You could be helping to improve cancer treatment for future patients

You may also

• Have more blood tests, CT scans or other cancer tests
• Have check ups more often and for longer than usual with your doctor or research nurse

Many people find this reassuring. Some people find it makes them more nervous and preoccupied with cancer. Only you know how you feel about this. The tests and check ups you need to have are explained to you before you decide to enter the trial.

Possible risks

There is some risk that an experimental treatment could harm you. The research team may not know a great deal about the new treatment yet. They will keep a close eye on you, and will stop the treatment if necessary.

Remember that even in phase 1 or 2 trials, the treatment has been carefully researched in the laboratory before it is given to patients. With phase 3 trials, more is known about the new treatment so there is less risk that there could be a harmful side effect.

Side effects

There is a chance you will get side effects that you (and your doctor) weren't expecting. If you are in a phase 1 trial, the researchers may not be able to tell you much about side effects. They will tell you everything they do know before you agree to take part in the trial.

You will be asked to report all your side effects to your doctor or nurse. They may ask you to keep a diary at home or fill in questionnaires about side effects, such as feeling sick or tiredness.

Other possible drawbacks

There are other drawbacks. You may have to make more trips to hospital. You may also find this increases your worry about cancer. You may also have to do some paperwork.

If you need more check ups and tests, you will spend more time at the hospital. This will cost you time and money. If you don't like visiting hospitals, you may need to think carefully about this.

You can ask if there is money available to cover your fares. Trials can go on for a long time and fares can add up.

For some people, more check ups means more reassurance. For others, it means more worry. Only you know how these appointments are likely to affect you.

Can I leave the trial?

You can withdraw from a trial at any point. You don't have to give a reason. If you withdraw, you can have the standard treatment available for your type and stage of cancer. Withdrawing from a trial will not be held against you in any way.