For children with cancer, parents are often their best advocates. They look to their parents for guidance, support, and reassurance. The reality, however, is that parents are often as frightened and lost as their children. Because of this, parents must make a conscious, intentional effort to ask questions of their healthcare providers.
As an advocate for a child with cancer, parents do the difficult work of pursuing top-tier care. This includes asking good questions, clarifying concerns, and seeking out the best care team for their child.
Health literacy is a problem among most Americans. Studies show that nine out of ten Americansdo not fully understand or remember what a doctor has told them after their appointment. Four out of ten are unsure about how to properly care for themselves when they come home from the hospital or take medication.
When patients only remember half of what their healthcare provider has said — including decisions and recommendations — it is more important than ever that parents actively engage in healthcare conversations regarding their children.
Here are important questions to discuss with your child’s cancer treatment team. Remember, this is just the beginning: ongoing communication with doctors, nurses, and specialists is key to optimizing long-term cancer care.
Questions About The Diagnosis
What type of cancer does my child have?
What stage of cancer is it and what does that mean?
Can you explain my child’s diagnosis/pathology report/lab results to me?
Receiving a cancer diagnosis can be an understandably shocking experience. We tend to hear “cancer” and draw the worst conclusions. Your care team must explain the diagnosis to you in full: including explaining the type of cancer your child has, the stage and severity of cancer, and what their various lab results mean. Establishing this baseline of knowledge will better equip you to ask questions, comfort your child, and understand the next steps.
Questions About Treatment
What are our treatment options?
What treatment do you recommend and why?
Who will be leading my child’s treatment team?
What are the potential long and short-term side-effects of these treatment options?
How could this treatment impact my child’s growth, development, and future fertility?
What impact will treatment have on my child’s daily life?
What is each step in my child’s treatment plan? How long will it take?
What can we do to relieve uncomfortable side-effects of treatment?
Who should I contact in case of a medical emergency?
Cancer treatment options are always progressing. Your doctor may have particular recommendations for treatment. Ensure that you are on the same page for the overall goal — both survival and quality of life.
Understanding and anticipating side-effects can help you better care for your child throughout their treatment. This includes ways to alleviate symptoms as well as planning for necessary lifestyle changes. For parents, it is always valuable to get second opinions and to find care providers you feel comfortable with. Be an advocate for their child to help ensure that the best treatment path is being pursued.
Questions About Care
What resources for support are available to us? (Emotional, psychological, financial, transportation services, survivorship groups, etc.)
When and who should I contact regarding side-effects?
What is the follow-up plan after treatment is completed?
What red flags should we be aware of for recurring cancer?
What are the chances of the cancer returning?
Follow-up and holistic care may not be addressed at your first appointment, but they are crucial points of discussion. These will offer clarity and realistic expectations about your child’s recovery, chances of a future cancer diagnosis, and other long-term effects from cancer and its treatment.
For families embarking on a cancer journey with their child, there is an overwhelming amount of information to process. These questions are far from the only ones worth asking, but they offer a starting point. If you find yourself forgetting or being unable to process a meeting with your child’s care team, bring a third party who can write down pertinent information. Collect the cards and contact information from the care team so that you know who is responsible for different aspects of your child’s care.
At the end of the day, you are the best advocate for your child and the quality of their care.