Empowering Young Childhood Cancer Survivors to Know Their Medical History and Be Their Own Advocates
By Allie Neenan, PhD, LP | Last updated 6/11/26
Co-authors:
Mariah Forster Olson, MBA
Coalition Against Childhood Cancer (CAC2), Survivorship Lead
The Neuroblastoma Children's Cancer Society (NCCS), Survivor, Family, and Resource Director
Margaret Gossen, AM, LCSW, OSW-C
Pediatric Hematology/Oncology Social Worker
Northwestern Medicine Central DuPage Hospital
As a parent to a childhood cancer survivor,
you know what it means to have hard conversations. The most important
discussions after diagnosis happen under the hardest circumstances - the stakes
couldn’t be higher, and there’s almost no time to process what’s happening. You
make the best decisions you can about treatment, moments after getting the
worst news possible. Nobody should ever be in those shoes. Now that treatment
is over, it’s natural to want to put all of that behind you.
But it turns out that it’s not that simple:
when treatment ends, new lines of communication open up. Young cancer patients value honest conversations about
their health. Major children’s health organizations such as the International Society of Pediatric Oncology and the American
Academy of Pediatrics recommend that children be included in
conversations about their health that match their developmental level. As
children grow, their information needs grow alongside them.
If you haven't been here before, welcome to Cancer Cushion! Every post on this website is written by licensed clinical psychologist, Allie Neenan. Cancer Cushion is my resource library for every age, role, and stage in the childhood, adolescent, and young adult cancer journey. While I wish websites like this weren't necessary, I'm glad you're here.
Why Communication Matters
You may feel surprised when your child’s medical team* encourages
you to talk about cancer as a family. Most of the time, we seek to forget the
bad things that happen to us. We want to focus on the positive, on the present,
and on the future. Talking about the past can bring up painful emotions that
are easier to avoid. So why does communication matter?
Knowledge is power. Children need accurate
information about their bodies and their histories. Childhood cancer survivors
may notice differences between themselves and their peers. These include
physical differences such as scars as well as practical differences such as
going to hospital appointments. Open communication shows children that it is
normal for them to have questions, and that parents can help them find answers.
*The phrase “medical team” is meant to encompass many different healthcare providers. Many, but not all, childhood cancer survivors receive care from oncology or cancer survivorship teams. Some children see other specialists related to long-term side effects of cancer treatment. Most survivors have a primary care provider, such as a pediatrician or family medicine practitioner. While not all medical team members specialize in childhood cancer, all medical professionals can share information and referrals to healthcare providers to address your concerns.
Risks of Avoidance
Avoiding conversations about cancer and cancer
survivorship comes with several risks:
Children may feel that cancer is something to be ashamed of, or something to hide. Sadly, children with cancer are significantly more likely than healthy peers to be bullied. Children may already be receiving negative messages about what it means to be a cancer survivor by the time they enter survivorship. Consistent, uplifting conversations led by parents are critical for buffering the harm of outside criticism. Children may feel that cancer is too big or scary to handle if nobody talks about it. They may also feel like there is something wrong with them for having questions if they do not see healthy medical discussions modeled for them. Children may not know how to talk about important physical or emotional symptoms that require follow-up care. It is incredibly difficult to carry the knowledge that health risks continue after cancer treatment ends. Your family is also likely relearning how to navigate “normal” childhood illnesses and injuries. Clear communication about bodies, health, and symptoms is essential for childhood cancer survivors. Children may already be seeking this information out if they have access to the internet, and they may find inappropriate information without parental guidance. If talking with parents is taboo, children are more likely to hide these efforts to learn more about their health. This can lead to misinformation and increased anxiety.
Parents are often balancing these concerns
with the risks of choosing to discuss cancer:
Parents may feel overwhelmed when talking about traumatic events from the past. Approaching these conversations may prompt awareness that further mental health support is needed for one or more members of the family. Similarly, inviting children’s questions about cancer may lead parents to realize that they lack complete answers. It is important to seek information and resources from the medical team, because parents need support too. Children may feel scared when they learn about long-term health impacts of cancer treatment. Even though emotions like fear and anxiety are manageable, they are hard to face. Breaking conversations down into smaller chunks can reduce the emotional burden of serious topics. Focusing too much on cancer can get in the way of finding a “new normal” after treatment ends. Survivorship is a lifelong balance between focusing on the present while acknowledging future risks. In the early days after treatment is finished, it can be hard to hold it all at once.
All of these risks are hard to come to terms
with as a parent. Cancer treatment is risky enough, and it is incredibly unfair
that survivorship has its own burdens. It is normal to grieve the repeated loss
of innocence that children with cancer experience. It’s also exhausting to
continuously weigh different options and try to choose the least harmful one.
For these reasons and more, it’s important to remember that risk is only half
of the picture when it comes to talking about cancer. Decisions that come with
potential risks also come with potential benefits.
Benefits of Open Conversations
Open communication between children and
parents has a wide range of emotional and developmental benefits .
This is true regardless of the topic at hand - parents are always a safe and
trusted source of information for children. This is especially true with
serious topics like cancer. Parents have the power to shape the family’s story
of the cancer journey.
The benefits of talking openly about cancer
include:
Children’s self-efficacy grows when they understand challenges that they have overcome. Even though no one chooses to go through cancer, children do make choices about how they go through cancer. The strength that children show during treatment carries them through the medical complexities of survivorship. Children benefit from having language and skills that enable medical self-advocacy throughout short-term and long-term survivorship. For example, when they know which tests they will have to complete, they can ask for tools that make the process easier. Communication strengthens children’s trust in parents as authoritative leaders in hard situations. As children grow, they will face challenges in all areas of life. When they feel confident in approaching parents about cancer, they are more likely to do the same with other problems as well.
At times, there are also benefits
to withholding or delaying information. Although it’s critical to offer
truthful answers to questions, shorter answers are easier to digest. It’s
impossible to process an experience as intense as childhood cancer within a
single conversation. You won’t always know the “right time” for every
discussion. When in doubt, consult your child’s medical team for guidance.
Age-Based Conversation Tips
It may feel like survivorship conversations
have to be perfect - after all, so many aspects of cancer treatment rely on
precision to keep your child safe. Thankfully, there really is a lot less at
stake when it comes to healthy adjustment in survivorship. It’s ok to not know
all of the answers to your child’s questions. It’s ok to feel sad or nervous.
It’s ok to say “too little” or “too much” and course-correct later.
Here are some key tips to keep in mind for
different age groups:
Preschool - One major
goal at this age is to establish a foundation of basic knowledge that children
can build upon as they grow. Having picture
books or videos available to explain words like cancer
and chemotherapy is very helpful. Preschool aged children also ask a lot of
“why” questions that may not have a clear answer. For example, children may
ask, “why did I get cancer?” These types of questions can be very hard for
parents to hear. If you feel caught off guard, remember to Reflect and Praise:
Reflect = “You’re wondering why you got
cancer.”
Praise = “I’m really glad you asked me such a
big question.”
The most powerful thing you can do is show
your child that asking questions is safe. Keeping the dialogue open is a far
bigger priority than giving the “right” answer. You can also write down
questions that children ask to save for medical appointments, and narrate the
importance of writing down questions for doctors as you do so.
Elementary School - One major
goal at this age is to help children understand how cancer is one part of their
overall life story. Once children start school, they begin to understand how
they are similar to and different from other children. Children’s identities
start to form through these comparisons between themselves and others. Identity
formation is also shaped by a child’s own life experiences. What are some words
that you want your child to use to describe themselves, inside and outside of
the cancer journey? Brave? Strong? Resilient? Kind? Think of a few examples of
times that they have shown these qualities. Pick situations that are cancer
related and non-cancer related, to help reinforce that cancer does not define
your child. Children feel empowered when they are recognized for the good
choices they make. When a childhood cancer survivor can describe what being a
“cancer survivor” means in their own words, they are better prepared to
advocate for themselves in all aspects of life.
Middle School - A major
goal at this age is to balance a tween’s desire for independence with their
need for guidance. In many states, children are able to access medical records
and online patient portals by age 13. This is the perfect time to start
practicing skills like asking direct questions at medical appointments.
Adolescence is also a time when many young people gain increased internet
access. Responsible internet searching is a skill that even adults struggle
with. Coordinate with your child’s medical team to learn about websites and
other online resources that are good sources of information as well as what to
avoid.
High school - This is the
age when everything comes together. By age 18, teens must be prepared to take
ownership of their healthcare. Critical medical history includes diagnosis
names and dates, medication names and treatment dates, treatment team members’
names and specialties, and survivorship screening guidelines. Information on
common mental health challenges in survivorship, and ways to seek support,
should also be discussed. Each of these details can be introduced gradually at
younger ages, then consolidated during the later teen years.
Next Steps for
Parents
If you are struggling to decide what to share
about cancer with your child, you can use this worksheet to help you organize
your thoughts. Clarifying the goals of cancer conversations can take some of
the pressure off of choosing the exact details.
