Having cancer can make you feel scared and like life is out of control. It can feel like you have lost everything that was normal and 'certain'. You are seeing lots of doctors and nurses, and suddenly your parents may be more involved in your care again, like when you were a younger child. It may feel like other people are making all the decisions for you.
Some teens describe learning of their cancer diagnosis as having had their whole world completely transformed—their bubble burst. As one teen said, "I sat in my chair, wishing that all I was living would be a horrible bad dream. But I knew it wasn’t. I felt like the world had stopped. I couldn’t believe it." (TM, 16 years old)
How can I be more involved in making decisions that affect me?
1. Get informed about your cancer and treatment.
Being informed about your treatment can help you know what to expect and feel a bit more in control.
Here is a list of questions about your treatment that you should ask your health-care team. If you feel nervous at first, you can ask your parents for support. The answers to these questions will help you know what to expect.
- Why am I getting this particular treatment, and how will the treatment affect me physically and emotionally?
- What are the risks and benefits of having this treatment?
- Are there other available treatments instead of this one?
- What might happen if I do not have this treatment?
- What are the short-term and long-term side effects of this treatment?
In some cases, your doctor will give you a list of all the side effects that might occur. Remember, only some of these side effects will actually happen; but since your doctor cannot predict ahead of time which ones will affect you, they may mention all the possible side effects. Your best source of information about what to expect is your health-care team.
2. Communicate your goals
You probably have goals that extend beyond cancer such as your education, career and/or your favourite activities or hobbies. These goals are specific to you, so it's important to communicate these to your health-care team. If you have a favourite activity, for instance, you might want to know how the treatment will affect your ability to do that activity now and in the future. You can also ask which kinds of activities you will still be able to do during your treatment and which activities may be difficult or impossible.
3. Practise being assertive
Do you often say "yes" when you mean "no"? Do you hold back your opinion or not stand up for yourself because you are afraid of upsetting or annoying others? Do you think that your opinion does not matter? If this sounds like you, you may want to practice being more assertive.
Assertiveness means expressing yourself in a clear way while respecting the rights of others. It is not the same as aggressiveness, which is hostile behaviour and disrespectful of the rights of others. It is also not the same as selfishness, which means only thinking about yourself. You can practice being assertive by clearly communicating your wishes, opinions and feelings with your family, friends and health-care team. Practice expressing yourself in a way that is confident but respectful. Afterwards, think back on how well you expressed yourself and what happened next. The more you practice being assertive, the more you will gain self-confidence and the respect and trust of others.
4. Communicate your wish to be part of making decisions
As you get older and have a better understanding of your cancer and its treatment, you may wish to take more responsibility for decisions about your health and treatment. This can be difficult because your parents and health-care team might already be making many decisions for you. If you feel like you want to have a say in more decisions or take more of a leading role, talk to your health-care team. By asking questions and giving your opinions you show that you are prepared to take on more responsibility and become more involved. Remember that the goal of treatment is for you to achieve the best possible health, so you should be involved in the decisions that are made.
As one teen with cancer stated, "[Taking part in decisions] does give you control…it gives you independence…it gives you control over your life…it gives you self-esteem…it gives you confidence…it gives you your self-identity. You know more about yourself when you make decisions." (NS, 15 years old).
