Neuroblastoma

The ABCs of the illness and its treatment.

This page provides reliable and welcoming information for families, patients, and healthcare professionals. The content is psychoeducational and does not replace guidance from healthcare professionals.

What is neuroblastoma?

Neuroblastoma is a rare type of cancer that originates from immature nerve cells called neuroblasts, which are part of the sympathetic nervous system.

This malignant neoplasm primarily affects children, being more common in infants. In most cases, it is diagnosed before the age of 5, and approximately 50% of cases are classified as high-risk.

Causes

Unlike adult cancers, childhood cancer is not usually linked to environmental or lifestyle factors. Instead, it is caused by genetic changes that occur spontaneously during a child’s development.

The exact cause of neuroblastoma is still not fully understood, but its development may be associated with two main factors:

Mutação esporádica

Sporadic mutation

A sporadic genetic mutation is a spontaneous change in DNA that causes neuroblasts to grow uncontrollably, usually without any identifiable cause.

Mutação hereditária

Hereditary mutation

Hereditary neuroblastoma, present in 1% to 2% of cases, results from mutations in genes such as ALK or PHOX2B, which can be passed from parents to children.

Signs and symptoms

Signs and symptoms can vary from child to child, depending on the tumor’s location and its impact on the body.

It is important to remember that a child may experience one or more symptoms, either individually or in combination. In some cases, symptoms may be subtle and develop gradually, while in others, they may become noticeable more quickly.

The most common symptoms include:

Caroço

Lump

A lump that can be felt to the touch, usually without pain and without signs of inflammation.

Barriga inchada

Swollen belly

Belly enlargement. May be accompanied by pain, diarrhea, vomiting, constipation.

Dor óssea

Bone pain

Pain in the bones or joints, which may be mistaken for "growing pains."

Alterações nos olhos

Changes in the eyes

Dark circles under the eyes, bulging eyes, possibly with swelling and discomfort around them.

Dor no estômago

Stomach pain

Constant discomfort or pain in the stomach area, which may be accompanied by nausea or bloating.

Comportamento

Behavior

Change in behavior without apparent cause: irritability, impatience, discouragement...

Constipação

Constipation

Constipation, also known as constipation, bowel obstruction or difficulty in pooping.

Sudorese

Sweating

Excessive sweating, high blood pressure and rapid heartbeat without apparent causes.

Falta de apetite

Lack of appetite

A decreased desire to eat, which can result in a gradual and significant loss of weight over time.

Perda de peso

Weight loss

Weight loss for no apparent reason, due to the action of the tumor on the metabolism.

Cansaço

Tiredness

A lack of energy, making it difficult to engage in activities, physical effort, or social interactions.

Fraqueza nas pernas

Weakness in the legs

Weakness, numbness, or difficulty walking, especially if the tumor is near the spine.

Outros sintomas

Other symptoms

Not so frequent, symptoms such as diarrhea, fever and headache may also appear.

The signs and symptoms of neuroblastoma can be subtle and resemble those of other common childhood illnesses, making early identification challenging. Additionally, child development and social interactions can influence how these signs are perceived.

If you are a family member and did not notice the symptoms early on, do not blame yourself. What matters most is moving forward with the support of healthcare professionals and those around you.

Trust the process and remember: you are doing your best, and you are not alone in this journey.

Diagnosis

To identify neuroblastoma, tests are performed to confirm the diagnosis, locate the tumor, and assess its characteristics. This information is essential for guiding treatment more precisely.

It is important to remember that not all tests are necessary for all patients; the choice of procedures depends on the specific needs of each case, as assessed by the medical team.

Ultrassonografia

Ultrasonography

Also known as ultrasound or USG, it is often used to identify changes in our organs, and is essential for diagnosis.

Cintilografia com mibg

MIBG scintigraphy

One of the main diagnostic tests uses the drug Metaiodobenzylguanidine. The radioactive material is injected and helps to mark the tumor cells.

Exame de urina

Urine test

Known as pee, urine can contain substances eliminated by the body such as catecholamines, which help in diagnosis and monitoring treatment.

Hemograma

Blood panel

Or blood test. It is the procedure of withdrawing blood to analyze its components: red blood cells, white blood cells and platelets.

Radiografia

Radiograph

Famous X-ray, which helps to see the internal parts of the body, such as the bones. We may have to stand, sit or lie down, but be careful: we cannot move. Statue!

Tomografia

Tomography

It is a non-invasive exam that shows the inside of our body in 360 degrees. It can be performed with or without contrast and can take a little time to complete.

Biópsia

Biopsy

A biopsy is a procedure that removes a small sample of the tumor to be analyzed in a laboratory, confirming the diagnosis and its characteristics.

Ressonância magnética

MRI

Magnetic resonance imaging creates detailed images using magnetic waves. It is an essential test for accurately locating and evaluating a tumor.

PET Scan

PET Scan or PET CT is an exam that may be indicated in some cases, depending on the medical evaluation and the individual characteristics of the patient.

Some procedures may require sedation to ensure that the child is comfortable and calm during the procedure.

Treatments

Neuroblastoma treatment is planned individually, following specific protocols that take into account the child’s age, the stage of the disease and the characteristics of the tumor.

Health professionals can value the family’s history and preferences, ensuring that their concerns and expectations are considered in the decision-making process, always seeking the best treatment.

Some types of treatment are:

Cirurgia

Surgery

The aim is to remove the tumor in whole or in part, and may also remove affected organs. In many cases, surgery is combined with other treatments, such as chemotherapy and radiotherapy, which may be performed beforehand to reduce the size of the tumor, or afterward to eliminate any remaining cancer cells.

Quimioterapia

Chemotherapy

It is a treatment that uses drugs to eliminate cancer. These drugs are introduced through a vein or catheters, and the treatment is done in cycles, with periods of application and rest so that the body can recover. In many cases, chemotherapy may be the main treatment option.

Radioterapia

Radiotherapy

Radiotherapy is a treatment that uses radiation to destroy cancer cells. Depending on the need, it can be proposed at different times during treatment, such as before surgery (to reduce the size of the tumor), after surgery (to eliminate unhealthy cells) and even for pain relief.

Imunoterapia

Immunotherapy

Immunotherapy uses our immune system to fight the disease by strengthening the body's defenses and identifying and eliminating unhealthy cells. It makes treatment more targeted and efficient, reduces damage to healthy cells and increases effectiveness against the tumor. It can also be combined with other treatments.

Transplante

Transplant

Bone marrow or hematopoietic stem cell transplantation can be autologous (from the patient himself) or allogeneic (from a compatible donor) and allows the application of high doses of chemotherapy. Stem cells are collected before treatment, which destroys the bone marrow, and then reintroduced to restore cell production.

Terapia retinoide

Retinoid therapy

It is used to consolidate results. The most common drug, 13-cis-retinoic acid, helps cancer cells mature and behave like normal cells. It is given after treatments such as chemotherapy and transplants, in cycles with medical monitoring to monitor side effects.

Neuroblastoma treatments can cause side effects, which vary from child to child and depend on the type of treatment performed. If you notice any unusual symptoms, talk to the healthcare professionals, they are ready to help and ensure the patient’s well-being.

Support

It’s always good to know that we’re not alone and that we can ask for help. Here, you’ll find tips and forms of support that can be important during diagnosis and treatment.

Informação

Information

Staying informed is a way to take care of yourself and those you love. Understanding the treatment helps reduce anxiety and provides more security. And remember: no question is too silly!

Psicólogo

Psychologist

During treatment, it is normal to feel a variety of emotions: fear, anger, sadness... They are all valid and require attention. A psychologist can help you understand and deal with these feelings.

Benefícios

Benefits

Free treatment through the SUS, Treatment Outside the Home (TFD), free transportation, BPC/LOAS, sickness benefit, tax exemption. Talk to the social worker to find out how to access them.

Equipe multiprofissional

Multidisciplinary team

Physiotherapists, nurses, occupational therapists, social workers, nutritionists... there are so many professionals that this space is too small. They all have an essential role to play in taking care of you.

Cuidados paliativos

Palliative care

Palliative care exists to improve quality of life, alleviating symptoms and providing comfort and well-being to the patient and family, at any stage of treatment.

Pesquisa clínica

Clinical research

Studies to test new treatments or improve existing ones, ensuring safety and effectiveness. Talk to your medical team to find out about available studies and how to participate.

Classe hospitalar

Hospital class

Attending school during treatment can be a challenge, but the good news is that some hospitals offer specialized teachers to help you continue learning. A+, right?

Rede de suporte

Support network

Essential during treatment, whether it is a family member, friend or someone who is going through something similar. Small gestures, such as listening or helping with routine, make all the difference.

Um passo por vez

One step at a time

Dealing with all of this isn’t easy, but it’s possible to find achievements along the way. Focusing on the present helps you realize that, even with challenges, life continues to happen.

Frequently asked questions

Is neuroblastoma curable?
Yes, neuroblastoma can be treated and controlled in many cases, especially when diagnosed early. With a trustworthy medical team, it is possible to ensure the best care for the child and close dialogue with the family.

What was done wrong for the child to be diagnosed with neuroblastoma?
Often, feelings of guilt may appear, but it is important to know that neuroblastoma occurs due to changes in the cells that cannot be controlled or avoided, and the cause, in most cases, is unknown. The health team will be a great ally in this journey: go crazy, breathe in, take a breath and let’s move forward!

Will hair fall out with the treatment?
Some treatments, such as chemotherapy, can cause hair loss, but this is temporary. Once treatment is complete, the hair will grow back.

Is neuroblastoma contagious?
Neuroblastoma is not contagious. It is caused by changes in the body’s cells and cannot be transmitted to other people. However, during treatment, the immune system may become more fragile, and close contact, such as hugs, may need to be avoided.

Is it normal to feel nervous after treatment ends?
Feeling nervous or worried is completely normal. One way to alleviate these feelings is to share them with people you trust and talk to a psychologist. Knowing people who are going through something similar can also help a lot at this time.

Why is it necessary to continue having tests after treatment ends?
Routine tests are an important care measure, and not just for those who have already undergone treatment – everyone does! They help ensure that everything is okay and allow any changes to be identified early on.

More and more questions!
Having questions is common and important! Asking questions helps you understand better and feel more secure, your team will be ready to answer you.

Supporters

This content was developed with great care and was only possible thanks to the co-creation of patients, family members, healthcare professionals, technology and communication experts, as well as the fundamental support of our partners.