By Laura DeKraker Lang-Ree, Childhood cancer advocate, speaker, CAC2 Member and bestselling author of The Cancer Parent’s Handbook: What Your Oncologist Doesn’t Have Time to Tell You
Reality Check
Let’s get real for a minute: life during cancer is tough. Life after cancer takes courage.
When my daughter Cecilia was diagnosed with leukemia, our world turned upside down overnight. For years, we measured everything by appointments, labs, and counts, dreaming of the day it would all be (hopefully!) over.
But here’s the truth no one prepares you for: the end of treatment isn’t the end of the journey. Relief and gratitude flood in for sure. But they’re quickly joined by new fears, new routines, and the strange disorientation that comes when your medical team suddenly steps back. Everyone around you expects a celebration. But you? You’re quietly wondering not only what just happened!? But what now?
Maybe you’ve felt that mix of pressure and true desire to “move on,” while trying to figure out who you are after cancer. Maybe you’re wondering how to care for that incredible body -yours or your child’s -that just fought the fight of its life. Or maybe you’re the young adult stepping into survivorship, realizing that from here on out, it’s all on you.
This blog post is here to help. It’s filled with tips for rebuilding, redefining, and learning to advocate for yourself in a whole new way. And the CAC2 resources associated with this blog will help you find your way. Because the end of treatment isn’t the finish line. It’s an invitation to begin again as a powerful, informed advocate for yourself or your child, post-treatment.
Recently, I was a guest lecturer at Stanford University School of Medicine for their 3rd year medical students. The topic was Fostering Collaboration & Advocacy in the Doctor / Patient Relationship. One thing I learned as I prepared for that lecture and when I collaborated with countless doctors and nurses while writing The Cancer Parent’s Handbook, was that we all want the same thing- better connections. More mutual respect. And to help each other have better outcomes both during and after treatment. Our job as a patient or caregiver is to learn to flex those advocacy skills so that we can share what we are experiencing, feeling, and seeing as we move into Survivorship. That way, we get the best care possible.
Building Advocacy Muscles: Early Practice
Let’s be honest ~ advocacy isn’t something most of us are born knowing how to do. It takes courage, time, and might feel a little weird at first. After all, isn’t somebody else supposed to know everything about your body? Yes…and no! While your medical team and aftercare clinic are experts in the drugs, protocols, and symptoms, YOU are the expert of your body. Nobody knows you – like you! And the earlier you start speaking up, the easier it becomes to advocate for yourself when it really matters.
Before any appointment or big conversation, take a few minutes to prepare. Write down what’s on your mind, your questions, what you are experiencing, your worries, and hopes. Do a little research on a trusted medical platform online where you can ask medical questions and get answers from medical resources.
Toolkit Tip:
Start with low-stakes asks. When you are confused about a next step at your after care clinic, your medical center, or at school, try saying: “Tell me more about that?” or “How might that impact me?” The more you practice, the easier it gets, until asking for clarity feels as natural as taking a breath. Soon enough, you won’t even be intimidated to ask follow up questions!
At my Stanford med school lecture, students practiced active listening and role-played real scenarios to explore the dynamics at play, including their built-in authority as future MDs. For caregivers and patients, that means rehearsing questions like, “What would be helpful right now?” or “What are my options?” For clinicians, it’s about learning to welcome those questions instead of shutting them down. These simple exchanges are powerful trust-building moments. They make care more collaborative, and they teach all of us how to advocate more effectively, on both sides of the conversation.
Medical Advocacy: Taking the Reins
One of the biggest transitions after treatment is learning to go from being a passive patient or caregiver (which many of us are guilty of doing) to being an active partner in your care. That means asking questions, requesting explanations, and being brave enough to say, “I don’t get it, can you please go over that again?”, or “I read this article, can you tell me your thoughts about it regarding my care – is this an option for me?”. As your day-to-day medical team steps back, it’s time for you to take the reins.
For caregivers, this part can be tricky. You’ve spent months (or years) speaking for your child, protecting them at every turn. But part of survivorship means slowly handing the mic over to your kid, especially as they get older, and giving them space to find their own voice while you support them. If they are young, maybe it’s starting to have them introduce themselves at an appointment, asking one small question, or explaining how they feel in their own words. Those moments matter. They’re the baby steps toward becoming a young adult who can take the reins on their care with confidence, while you are there to catch them if need be.
Toolkit Tip:
Build a simple, portable “Life After Treatment” binder or digital folder. Think of it as your family’s medical command center – something that can travel easily to appointments or college move-in day. Include:
Small organizational moves like this help you (and your child) feel prepared, informed, and firmly in the driver’s seat without having to remember everything on the fly. Remember, confidence and self-advocacy skills come from preparation..
As I told my Stanford students, advocacy works best when everyone understands their role. Doctors bring medical expertise; families bring lived expertise. Both are essential. Collaboration begins when both voices are heard – and that’s where true partnership starts.
Owning Your Voice at School and With Friends
“Back to normal” is kind of a myth post-cancer. For example, re-entry into school and social life after treatment can be confusing, exhausting, and sometimes lonely.
When it comes to school, your child has important and specific educational rights post-treatment. Cancer treatment can cause long-term effects that impact memory, focus, processing speed, and energy. These aren’t excuses; they’re legitimate medical realities, and you have rights.
That’s where EPOs (Educational Plans and Accommodations) come in. They exist to protect your child’s access to learning and support their success as they heal and grow. (Yes, your child qualifies!) The earlier you start that conversation with the school, the smoother the transition will be. Check out the CAC2 Survivorship Toolkit for tons of information on the ins and outs of IEPs and 504s.
How to Activate Support (the right way):
As a teacher, I can tell you, the more information you share, the better. We love getting clear, actionable information because we love your child, too! And we want to help.
Why this matters: Cancer treatment, in some cases, can cause neurocognitive and stamina changes that make school harder, even after “ringing the bell.” Formal plans ensure access, protect grades and attendance, and keep expectations clear for teachers, classmates, and most importantly, for your child. Don’t be scared. Get empowered. With the right tools, you or your child will be just fine – incredible even! And if your child is young enough, it is possible to rewire their brains through some simple steps. That’s what we did, and our precocious 3-year-old went on to get an undergrad AND master’s degree from a very “prestigious” college (where I may have recently lectured!).
Toolkit Tip:
Ask the school nurse or counselor to help coordinate your 504 meeting. Nurses are often your best allies in making sure medical needs are translated into real, day-to-day support from the teachers and principal. Keep copies of your treatment summary and accommodation plan in a shared digital folder so teachers, subs, and future schools stay on the same page.
Write a short “About Me” note for teachers, coaches, or new friends. A few sentences can prevent a world of misunderstanding: “I’m getting back into routines after treatment. Here’s what helps me feel supported.”
During my Stanford lecture, I told the students something I’ve learned the hard way: when doctors, patients, caregivers, and yes, teachers and friends, see each other as teammates, everything shifts. Communication opens. Trust builds. And THAT’S how we move forward.
That’s the heart of advocacy: using your voice to build understanding, one honest moment at a time.
Where Aftercare Clinics Fit
After treatment, the last thing you—or your child—want to do is think about cancer, let alone walk into a clinic that reminds you of it. I get it, believe me. But here’s the truth: survivorship isn’t a finish line. It’s an ongoing process of learning, adapting, and checking in.
Aftercare clinics exist for exactly that reason—to keep an eye on your long-term health, track late effects, and connect you with the right specialists when something changes. They don’t add to your worries; they actually take them off your plate because someone else is watching out for you.
Ask what your clinic offers: for example, a dedicated aftercare program, survivor support groups, therapy referrals, help with school or work letters, or an ongoing checklist for your physical and emotional well-being. Bring a family member or friend for support, and prep your questions together ahead of time.
These clinics aren’t just a “nice-to-have.” They’re essential for your future self. If you don’t already have one, go find one now.
Toolkit Tip:
Treat every aftercare visit like a checkpoint on your journey, not a scary test. Bring your binder or iPad, update your notes, and walk in ready to lead the conversation. Ask: “What should I be watching for now?” and “Who do I contact if I notice X?” And remember to also be ready to share a little update on your life overall. Especially as it relates to physical and mental health issues.
One of my favorite parts of teaching at Stanford was watching future doctors recognize how small gestures – like eye contact, plain language, remembering a name -can completely change a patient’s experience. Collaboration isn’t theory; it’s built moment by moment in real conversations. Doctors at aftercare clinics are especially gifted in this area.
Practicing Advocacy, Every Day
Finding your voice and practicing self-advocacy means showing up for yourself again and again as you navigate the long-term side effects that come with being a survivor. Whether you’re at home, in the hospital, at school, or navigating friendships, this is a lifelong skill. And the truth is, cancer survivors (and their caregivers) are uniquely equipped to be really good at it because you’ve already proven you can do hard stuff.
Good advocates aren’t fearless. They just keep trying. You might stumble, get frustrated, or blank out entirely, and that’s okay. The win is in trying again. Every small moment you speak up, you’re reinforcing the message that your needs matter.
Keep practicing. Keep asking. Keep saying the hard things out loud. That’s what owning your voice looks like—one honest moment at a time.
Because when you do, everything changes. It’s the same truth I shared at Stanford: when doctors, patients, caregivers, and yes – teachers and friends -see each other as teammates, care becomes more human. Communication opens. Trust builds. And healing has room to grow. That’s the power of owning your voice and speaking your truth. You deserve it.
You’re not alone. I’ve got you.
I wrote The Cancer Parent’s Handbook: What Your Oncologist Doesn’t Have Time to Tell You to be the guide I needed when my daughter was diagnosed. It’s full of real talk, practical tips, and honest support on everything from hospital life and sibling dynamics to asking for help and becoming your child’s best advocate. You’ll find more on this topic—and much more—at my website.
Laura DeKraker Lang-Ree
