Being in control

If you had cancer as a child, you will receive an invitation to the LATER clinic of the Princess Máxima Center five years after your diagnosis. Research shows that people who had cancer in childhood are more likely to experience health problems later in life than others. Sometimes these issues only appear years after treatment. Many of these late effects can be treated well, especially if we detect them early. That is why we invite you to the LATER clinic. We want to help you stay in control of your own health.

Being in control means

From the age of 16, you decide for yourself whether you want to follow the LATER clinic invitation. From that moment on, you are legally responsible for your own care.
- You are the only person who has access to your medical file, but until you turn 18, you can choose to give your parents access as well.
- You decide about your care.
- You make your own appointments.
- You choose whether you want to bring someone to the LATER clinic and who that will be.
- You speak for yourself.
- You decide if you need help and in which situations.
- Your LATER physician is not allowed to share any information with your parents or caregivers without your permission.
From the age of 18, you continue your follow-up at the adult LATER clinic. There, you will have a different LATER physician, an internist. Your parents will no longer have access to your file. This does not mean you have to do everything on your own. Because your parents know a lot about your illness and treatment, you can choose to prepare your clinic visit together or invite them to come along.
There are several tools that can help you stay organized and in control of your health.
To start, there is the Patient Portal. Here you can log in to your file. It contains your medical information, your appointments, and explanations about those appointments. You can also find your test results, including laboratory results.
You can also use a PGO (Personal Health Environment). This is a place where you can collect information from different healthcare providers yourself, such as the LATER clinic, your general practitioner, pharmacy, and physical therapist. You can also add your own information, such as weight, heart rate, or email conversations with your (LATER) physician. A PGO is not a medical file, but it can help you stay in control and gain insight into your care. You can find different PGO options at www.pgo.nl.

Explore LATER

If you know what to look out for regarding your health, you can raise the alarm sooner.

Keep track of your well-being

Keep a record of how you're feeling at regular intervals. This way, you can see when things are going well and when they're not.

Prepare for your appointment

Complete the questionnaire available in the KLIK portal. The LATER doctor or nurse practitioner can then discuss it with you. Write down what you want to ask or say in advance. You can do this by asking three good questions during your appointment at the LATER clinic:

What are my options?
What are the advantages and disadvantages of these options?
What does that mean in my situation?

By asking these questions, you'll gain better insight into what's best for you. Together with your doctor or nurse practitioner, you can then choose which treatment or test is most appropriate. Check out https://3goedevragen.nl/

Take the initiative during your appointment.

Ask questions and ask for clarification if you don't fully understand something. Share an overview of how you're doing. Afterwards, write down the most important points together with the doctor or nurse.

Make contact
Connecting with people with similar experiences can be helpful. By sharing, you learn from each other. For more information, check out VOX, part of the Dutch Childhood Cancer Organisation. VOX also organizes all kinds of activities for survivors aged 16 and older, including camps, walks, information meetings and symposia.

Being in control

Being in control means

That you decide

Control over your health