As a parent, one of the hardest and most heartbreaking news you can hear is learning that your child has cancer. It's normal to feel scared, worried, and even sad when you hear about a rare, serious cancer like AT/RT (atypical teratoid/rhabdoid tumor). But it's important to remember that you are not alone in this difficult journey. Your child's medical team is with you every step of the way.
What is AT/RT (Atypical Teratoid/Rhabdoid Tumor)?
Simply put, AT/RT is a type of cancer that grows very quickly and starts in the central nervous system (CNS). Our central nervous system is made up of the brain and spinal cord. These cancer cells start in either the brain or the spinal cord. In about half of people with AT/RT, it starts in the cerebellum or brainstem. This condition mostly affects young children.
Symptoms can appear suddenly. At first, you may think your child has a minor illness, like a common cold. But these symptoms don't go away with time or with regular treatment. That's when a doctor will order tests to find out what's really wrong with your child. Once AT/RT is diagnosed, your doctor will talk to you about the best treatment options for your child's condition.
To be honest, the results of this type of cancer are often not very good. Because it spreads very quickly, and sometimes it is difficult to completely remove it. Therefore, the child's life expectancy may be shortened. However, not everyone has a bad outcome. Researchers are always trying to find new treatments to increase the chances of saving children.
It's normal to feel a lot of questions and uncertainty when you're diagnosed with cancer, especially a rare cancer like AT/RT. But remember, your child's medical team is with you throughout this journey. There is plenty of support for family and caregivers.
What type of cancer is AT/RT?
AT/RT is a very rare type of brain cancer that affects the central nervous system (CNS), that is, the brain and spinal cord.
How rare is this?
A study in the United States found that only 470 people live with AT/RT. That means that only about 73 people are diagnosed with the condition each year. Surprisingly, out of those 73, only 4 are adults. So you can imagine how much more it affects young children, and how rare it is.
What are the symptoms of AT/RT?
The symptoms of AT/RT can vary from person to person. They depend on factors such as the child's age and the location of the tumor. However, these symptoms can appear suddenly and become severe quickly:
- Headache: This is especially common in the morning. Sometimes it subsides after vomiting.
- Nausea and vomiting: Frequent nausea and vomiting.
- Fatigue: The child feels tired all the time.
- Changes in activity level: Not running and playing like before, feeling lethargic.
- Difficulty walking, maintaining balance, and coordination: It feels like you're off balance when walking, and it's hard to grab things.
Imagine, for a few days now, your little one has been waking up in the morning saying, "Mommy, my head hurts," or throwing up. He's too lazy to do schoolwork, and he seems sleepy all the time. If your child, who used to run around and play, now tries to stay in one place, that could also be a sign of something like this.
In small babies, this tumor may make the head appear slightly larger. However, in older children, it may not be as obvious.
What causes AT/RT?
The main cause of AT/RT is a mutation in one of two genes, either SMARCB1 or SMARCA4. These are called "tumor suppressor genes." Simply put, these genes make a protein that controls the speed and size of cells in our body. So, if there is a change or defect in these genes, the cells start to grow rapidly and uncontrollably. That is the reason why these tumors form.
Is this a genetic thing?
Yes, some cases of AT/RT can be genetic. This means that the germline mutation that causes this cancer can be inherited from parents to the child. However, in most cases, it is not hereditary. This means that the mutation can occur sporadically in a child, even if no one in the family has had the condition before.
Who is most at risk?
AT/RT most often affects children under the age of 3. However, it is important to remember that it can develop in children of any age, or in adults.
How is AT/RT diagnosed?
A doctor diagnoses AT/RT by performing a physical exam, a neurological exam, and a few other specialized tests. During these initial tests, the doctor will ask you about your child's symptoms, past medical history, and whether anyone in your family has had this condition.
In addition, the tests performed are:
- MRI (Magnetic Resonance Imaging) scan: This can take detailed pictures of the brain and spinal cord. This can help determine the exact location and size of the tumor.
- Lumbar puncture: This involves taking a small sample of the fluid around the spinal cord (cerebrospinal fluid) and testing it to see if cancer cells have spread.
- Genetic testing: This test is done to see if there are any changes in the previously mentioned SMARCB1 or SMARCA4 genes.
- Biopsy: This involves taking a small piece of the tumor and examining it under a microscope to confirm the type of cancer.
What are the treatments for AT/RT?
Your child's doctor may suggest the following as treatments for AT/RT:
Surgery to remove the tumor
A neurosurgeon will remove the tumor as much as possible with surgery. However, chemotherapy and radiation therapy may also be needed to destroy any remaining cancer cells after surgery.
Chemotherapy
This is a type of medicine that kills cancer cells or stops them from dividing. Sometimes this medicine is given by mouth or as an injection into a vein or muscle (systemic chemotherapy). Another way is to inject the medicine directly into the fluid around the spinal cord (intrathecal chemotherapy).
Radiation Therapy
This uses high-energy X-rays to kill cancer cells or stop them from growing. A machine directs these radiation beams precisely to the tumor. Children under the age of 3 are given radiation therapy at very low doses because it can affect their growth and development.
Stem Cell Transplantation
After high-dose chemotherapy, a stem cell transplant is done to replace the cells lost from the child's body. Before chemotherapy begins, doctors take some stem cells from the child and store them. Then, when chemotherapy is over, the cells are given back into the child through a vein (intravenously).
Targeted Therapy
This is a new treatment for AT/RT that is currently in clinical trials. In this, certain drugs work by blocking certain things that help cancer cells grow and divide.
Immunotherapy
This is also a treatment currently in clinical trials for AT/RT. It works by helping the child's own immune system fight the cancer.
Palliative Care
This is done to reduce the child's symptoms, reduce pain, provide relief, and improve their quality of life.
Important: The doctor will perform all of these tests and decide which treatment is best for your child. Sometimes more than one treatment may be given. It is important to continue to be under medical supervision and have tests after treatment. This is how you can see if the treatment is successful and if the cancer has returned.
Who is on your baby's medical team?
You may see a variety of doctors and healthcare providers when treating AT/RT. Your child's medical team may include:
- Pediatricians or family doctors (Primary care physicians)
- Neurosurgeons
- Radiation oncologists
- Neurologists
- Genetic counselors
Are there any side effects of the treatment?
Yes, side effects can occur with all treatments for AT/RT. Your child's doctor will explain to you what these side effects are and what to watch out for during treatment. Some side effects may occur right away, while others may not appear until months later. If you have any questions, don't hesitate to ask your doctor.
What is the Outlook/Prognosis of AT/RT?
AT/RT is a very aggressive, rapidly spreading type of cancer, and if treatment is not completely curable, the child's life may end quickly. However, this varies greatly from person to person. For example, if the tumor can be completely removed with surgery, there is a chance of a cure.
The outlook is determined by several factors:
- Your child's age.
- Genetic inheritance.
- How safely can the tumor be removed through surgery?
- Whether the cancer has spread to other parts of the body.
Only your doctor can give you the most accurate information about your child's prognosis. If you have any questions, talk to your child's medical team.
What is the survival and cure rate for AT/RT?
Because AT/RT is such a rare type of cancer, there is not enough data to accurately predict the survival and cure rates for this condition. Your child's doctor will be able to provide you with the most up-to-date information regarding your child's condition.
Can AT/RT be prevented?
Unfortunately, there is currently no way to prevent AT/RT. If you are hoping to have another child, it may be a good idea to talk to a genetic counselor to find out if you or your partner have a genetic mutation that can cause AT/RT and what the risk is for your child to inherit it.
What questions should you ask your baby's doctor?
It's normal to have a lot of questions in your mind after learning about AT/RT. Be sure to ask your child's doctor these questions:
- Where is the tumor on my child's body?
- What kind of treatment do you recommend?
- Are there any side effects of the treatment?
- Will the treatment affect my child's growth and development?
- What is my child's prognosis?
Finally, the most important thing (Take-Home Message)
"Your child has cancer." These are some of the hardest words a parent can hear. You may be worried about what will happen next, about your child's future. While there are many uncertainties that come with cancer, remember that your child's medical team is with you every step of the way. They will help you navigate treatment, manage symptoms, and care for your child throughout their life. Research is continuing to learn more about AT/RT (atypical teratoid/rhabdoid tumor) and find new ways to treat it. So, never give up hope.
` AT/RT, brain cancer, childhood cancer, cancer symptoms, cancer treatment, genetic mutations, nervous system
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