After a diagnosis, a plan for treatment will be outlined. This can include decisions on treatment regimens. The healthcare team, the child’s parents and the child, if possible, should all be involved in making treatment decisions.
The oncology team puts together a treatment plan just for your child. Children with the same cancer can have very different treatment plans. The plan takes into account the type of cancer your child has and its characteristics, the stage of cancer and the family’s wishes.
This plan is often called a protocol. A treatment protocol provides guidelines on:
- how and when to test the child
- what treatment approaches to use
- the best doses and schedules for chemotherapy, targeted therapy or radiation therapy
- when and how to check the effects of treatment
- how to change the treatment if the results are not as expected
The treatment plan should be explained to you at a meeting with your child’s healthcare team. They will give you information about the treatment available for your child’s type of cancer, common side effects of that treatment, how successful treatment usually is, how much time your child may spend in the hospital and if special arrangements may be needed at home. Your healthcare team may also talk about clinical trials. Depending on the age of your child, the healthcare team may suggest that your child come to the meeting or part of the meeting. Young children don’t usually attend.
With this information, you or your child or both (depending on the age of your child) will have to make a decision about allowing your child to receive a particular treatment. It’s very important to understand what’s being agreed to. Ask the team to repeat any information or explain something again. You may ask to read documents over before the meeting so you can prepare yourself with any questions you may have. You can also ask for a short break if you need time to absorb the information.
Let the healthcare team know what language you feel most comfortable with. Your hospital may be able to provide an interpreter for you, either in person or over the phone. You can also ask for a sign-language interpreter if you are deaf.
Consent and assent
When a person decides on treatment and gives the go ahead for treatment to start after hearing all the information about it, this is called consent to treatment. Consent is needed for any type of treatment. In Canada, a child’s physical, mental and emotional development is considered in determining their ability to give consent to treatment. Depending on where you live in Canada, there may be specific laws about the age of consent.
When the child cannot give consent or is not at an age to understand all of the information involved in the treatment, the parent or legal guardian is responsible for giving consent.
When a parent or legal guardian gives consent, children who are old enough to be part of decision-making are asked for their assent. (Assent is the legal term for a child’s agreement to a treatment.) Involve your child as much as possible in treatment decisions. Give them information as appropriate so they can understand their situation and give their opinions.
Children’s cancer centres
Childhood cancer is rare compared to cancer in adults, and it is important that the child is treated in a childhood cancer centre. Children with cancer and their families have special needs that can be best met by a children’s cancer centre. They are also called pediatric cancer centres. Children’s cancer centres are hospitals or units in hospitals or in general cancer centres that specialize in the diagnosis and treatment of children and adolescents with cancer. Most children’s cancer centres treat children and adolescents up to the age of 17.
Children’s Oncology Group
The pediatric oncologists at most Canadian hospitals participate in an organization called the Children’s Oncology Group (COG). COG is responsible for finding the best ways to treat children with cancer. Through COG, oncologists receive information about new treatment protocols and improvements to existing protocols as soon as they are known. COG treatment centres are located across Canada and the United States.
You may be asked to enrol your child in a clinical trial to test a new treatment. About 60% of children with cancer are treated in a clinical trial at some time during their illness. Because childhood cancer is a rare disease, clinical trials usually involve several different childhood cancer treatment centres.
If a clinical trial is available, it often offers a different treatment than the standard or currently best available treatment. The newer treatment plan, which is called the investigational treatment, may use a newer drug, a different combination of drugs or treatments or some other new approach. The treatment being studied may be compared with the standard treatment because researchers think it is at least as effective as standard treatment, but it may be better in some way. They may be looking at whether it has fewer side effects or is better at treating the cancer. There are many different types and phases of clinical trials. Each clinical trial has rules on who can be a part of the trial (called eligibility criteria).
In most studies, it is not known which treatment is better until all the children in the study have completed treatment and have been followed for several years. But if one of the treatment plans is found to be better than the others while the trial is still going on, the trial is stopped and all children are given the treatment with the best results. If for any reason continuing with the clinical trial is not the best plan for a child, the plan will be changed.
Participating in a clinical trial is always voluntary. To participate in a clinical trial, you need to go through a process called informed consent.
Informed consent involves reading and signing a form that outlines all the information about the clinical trial, including details about the treatments, what is experimental and what is standard and any potential benefits or side effects.
Depending on where you live in Canada, there may be specific laws about the age of informed consent for clinical trials. When the child cannot give consent, the parent or legal guardian is responsible for giving consent. Children who are not old enough for consent but old enough to be part of decision-making are asked for their assent. Assent is a child’s agreement to participate in a clinical trial.
Find out more about clinical trials.