It’s important that you understand the diagnosis. If you still do not understand after it was explained to you, be sure to ask again. Don’t be embarrassed. Many conditions are complicated and need to be explained a few times. The treatment team is also there to help.
It is your right to be informed, and to ask questions about the treatment plan. It is essential that you are able to understand your child’s condition to make decisions about treatment.
It’s also important for you to trust your child’s doctor and other members of the treatment team because they will be making many decisions and giving you guidance over the coming months. If you need more details, your doctor can provide you with articles or websites that may be helpful.
At a lot of hospitals, doctors have regular meetings or rounds with each other where they are able to present difficult cases and ask for other opinions on diagnosis and/or treatment. So, your child may already be benefiting from the combined input of a number of experts.
If you are not comfortable with the doctor, you may want to talk to another member of the team, such as a nurse or social worker, who you are comfortable with. Together you may be able to address your concerns and find ways to build trust. By fully understanding what’s going on and having trust in the team, you will be more comfortable with what lies ahead.
Your child’s neuro-oncologist has many patients to see and you may not always be able to get in touch with them. If you cannot get in direct contact with your child's neuro-oncologist, talk to the clinic nurse. Your child's clinic nurse may help answer your questions or will put you in touch with the neuro-oncologist.
Some of the questions you might want to discuss are:
- How was this protocol developed?
- What is involved in the treatment plan?
- What will my child experience?
- What will be the side effects, both in the short- and long-term?
- How will the side effects be prevented or managed?
- Will my child need to have blood transfusions?
- Will my child need to stay in the hospital? If so, how often?
- What response do you expect? How many children have been cured by this treatment plan?
- What are the doctor’s credentials and experience?
- What will the effect be on my family?
If your child has been asked to participate in a clinical trial, you may have additional questions.
What if you want a second opinion?
For some parents, getting a second opinion provides the reassurance they need, either in confirming a diagnosis or treatment plan or exploring other options. However, be aware that this can take time and delay treatment. You are entitled to seek a second opinion from another expert. Some doctors are open to the idea and even encourage it. However, other doctors don't feel the same way. If you explain that you want more information to be fully informed, that should help. Regardless of your doctor's response, the choice to seek a second opinion is yours.
Many people are using e-mail to get a second opinion. Your neuro-oncologist may be able to recommend someone and arrange for you to e-mail or talk to another doctor. If you're not comfortable talking to your neuro-oncologist, your family physician may be able to make a referral to another neuro-oncologist.
It is important to realize that this can take time and delay treatment. Sometimes it is important to treat your child as soon as possible. Getting a second opinion may take away valuable time from treatment.