You probably have lots of questions about treatment. Knowing what is happening and why can make you feel more involved in your care. It can also make it easier to make decisions.
Sometimes you may have a choice of treatments. In this situation, it is helpful to ask your doctor to explain all the benefits and disadvantages of each treatment so you can make the right choice for you.
For some people, having more information helps them feel involved in their care and more in control generally. Other people prefer not to know all the details of their illness and want to leave treatment decisions to their doctors.
However, you need to have a certain amount of information to be able to give consent to your treatment. It is best if you explain how you feel to your healthcare team so they know how much information to give you.
Some questions may be difficult to ask, particularly when they are about very personal issues. For example, you might want to talk about the impact cancer and its treatment are having on your sex life. Or you may want to ask about symptoms you are experiencing that feel embarrassing.
You may feel afraid to ask these questions. But healthcare professionals are used to all kinds of questions and are happy to help.
Plan your questions
Appointments and other chances to speak with your healthcare team can be short. It is good to be prepared, and we have information to help you do that. It may help to write your questions before your appointment. Keep a notebook handy and write things as you think of them. Or you can order a free Macmillan Organiser.
You can make notes during appointments in a notebook or the Macmillan Organiser. This may help you to remember what is said. You can also get copies of any documents your doctor or healthcare team send to your GP. These might include information about your test results or treatment. Some healthcare professionals may be happy for you to record consultations using a dictaphone or smartphone. You should ask their permission first.
Consider asking a family member or friend to join you
You may find it helpful to bring someone with you to appointments, such as a family member or friend. They may also be able to make notes while you and the healthcare professional talk, and help you to remember what is said.
Do not feel you have to ask everything at once
You do not have to ask all your questions at once. There will be other chances to speak to your healthcare team. It is fine if you think of new questions or need to ask a question again. You can make another appointment, or speak to your healthcare team over the phone. Some healthcare professionals can also be contacted by email. Your key worker should give you their contact details so that you can talk over the phone or arrange a face-to-face meeting. You can use this to go over anything you do not understand or need repeating.
Remember that professionals are there to help
You may have questions that feel difficult to talk about. Remember that the healthcare professionals you speak to will be used to talking to people with all sorts of issues. They are there to help. It is very likely they will have helped other people in similar situations.
Be honest and factual when describing problems
Do not say that your symptoms are better than they are. Talk about how you feel, including feelings of anxiety or depression. Even if your healthcare team cannot help you, they should refer you to someone who can help.
Use your own language
Your doctors or nurses may use medical terms, but you don’t have to. Using terms that you only partly understand may cause problems. For example, healthcare professionals may think you know more than you do.
Ask for simpler explanations
It is okay to say you do not understand the terms used. Ask your doctor or nurse to explain things in a simpler way.
Say if you are embarrassed
Medical symptoms and problems can be embarrassing. They are often the kind of personal things we don’t want to talk about. When you start talking, you can say, ‘This is embarrassing to talk about, but…’.
Make sure you understand
Briefly repeat the doctor’s words back to them by saying the following: ‘You are saying that…’ If I have got that right, you mean that…’. This makes it clear how much you have understood. It will encourage your doctor or nurse to explain things more clearly.
Remember, you will have other chances to ask questions
You could make another appointment to ask your questions if you do not cover everything in the first discussion, or you change the questions you want to ask.
You may sometimes find it difficult to get all the information you need from the team looking after you.
Your own healthcare team is in the best position to help you and answer your questions. They have the most information about your situation, the cancer and your general health.
However, there are many other sources of support and information. It is important to get information from a reliable source, which is up to date and relevant to your situation.