2023-06-07 12:41:38
You didn’t notice Ambika, an active and cheerful child. Only she had a lump in the neck. It kept getting a little bigger. Fortunately, thyroid cancer in children has a good prognosis.
“My husband kept saying: we have to go to the doctor. To have the lump looked at. When I was there with my daughter, I immediately saw the doctor’s face: this is not good,” says her mother Widia. Ambika was sent to the hospital for blood tests and an ultrasound. There followed the diagnosis: papillary thyroid cancer, papillary comes from papilla, a protrusion or nodule, as in Ambika’s tumor. A form of cancer that occurs very rarely in children. Ambika was then almost 9 years old.
Lumpy in the neck
After a biopsy at the hospital, it turned out that the lump in her neck, a malignant tumor, was larger than 1 centimeter. Although this form of thyroid cancer is not life-threatening, it was necessary that Ambika’s entire thyroid had to be removed. The surgeon at the hospital where the diagnosis was made only performed this type of surgery on adults. Widia: “That is why I asked for a second opinion in Utrecht at the Princess Máxima Center. I just sent them an email.”
- Thyroid cancer is very rare in children
- A thyroid tumor occurs in children of all ages
- It usually starts with vague complaints, such as fatigue and lethargy
- Sometimes there is a lump, but if it is still small, you will not notice that something is wrong
- All knowledge and experience about this rare condition has been bundled in the UMC Utrecht Expertise Center for Thyroid Cancer
- We are one of the largest centers of expertise in the Netherlands and our unique collaboration with the Wilhelmina Children’s Hospital and Princess Máxima Center enables us to provide optimal care for both children and (young) adults with thyroid cancer.
Ask for a second opinion at the Princess Máxima Center
The email from Ambika’s mother received a response the same day. Together with pediatric surgeon Professor Vriens (WKZ), pediatric heart surgeon Dr Terwisscha took over Ambika’s operation from the other hospital. Ambika was present at all the conversations that followed, the whole family immediately felt that this was good. “Of course you don’t come to the WKZ voluntarily, but because something is going on. As a parent you are really sad and you don’t know it all for a while when your child is sick. Very special how they help us and approach us kindly in everything.”
Entire thyroid removed
During surgery, the entire thyroid gland is removed. That operation is what Ambika remembers the most. “Quite a strange feeling when I woke up after the operation, I was a bit dizzy. I remember when my mother was there. And then the doctor came. Fortunately, it all seems far away now and I am no longer concerned with it. Only when I come for a check-up in the Máxima does it come up again. Then I’ll be happy when we drive home again. Then I can meet up with my friends again to go into town.”
Rare cancer research
After the operation, Ambika stayed in the Máxima for a week, where her parents could stay in the parent-child bedroom. They also made Ambika’s medical data available for European scientific research into this rare cancer in children. This research is being carried out at the UMC Utrecht Expertise Center for Thyroid Cancer. Widia has never regretted that second opinion: “As a parent, you have to be assertive and have a firm footing. It’s about your child, about a human life, so you want the best quality of care. Especially when it’s so rare.”
Taking thyroid hormones every day
It is now going very well. Ambika is in the first of secondary education and is going through puberty. She occasionally quarrels with her older sister, but they also often do fun things together. She also has her hands full with homework. Because of this condition, Ambika has to take thyroid hormones every day. Widia: “She sometimes forgets that, she is also just an adolescent. Then she gets very tired. She doesn’t notice that herself, life just goes on for her. But I quickly figured it out. Then I consult with doctor van Santen. I have also informed the school about this, now Ambika is allowed to be late.”
It won’t bother you
To know that the disease will not come back, regular checks with blood tests and scans are necessary. That’s all going well. And the scar on her neck? Ambika: “That’s not too bad, because of my growth spurt it has become a bit bigger. It does not bother me. It’s over for me. Now back to the city with my girlfriends.”
Centers of Expertise for Rare Disorders
UMC Utrecht has more than 30 centers of expertise for rare diseases (ECZAs). One of which is the UMC Utrecht Expertise Center for Thyroid Cancer. This is the place where people with a rare, complex form of thyroid cancer can go. Many different specialists work together in this center for the diagnosis and treatment of this disease. There is also a lot of attention for scientific research to learn more about the condition and thus improve care in the future.
Determining the right treatment is challenging in a rare condition. Because the condition is so rare, knowledge and experience are scarce. The available knowledge and experience of a rare disorder is bundled in a UMC Utrecht Expertise Center. The final choice for the most appropriate treatment is determined within the team and together with the patient.
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