# Symptoms and Phases of Neuroblastoma
Neuroblastoma progresses in very different ways, depending on the age at which it is detected, how fast it grows, and whether it has spread. Some tumors grow slowly and cause few symptoms for a long time; others grow aggressively and quickly lead to serious symptoms. This tab describes which symptoms can occur at which times and how they affect daily life.
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Early stage (confined to the place of origin)
At the earliest stage, the tumor is still mainly in one place — usually in the abdomen, sometimes in the chest or neck. Many children currently have **no or very few symptoms**.
**Observable phenomena: **
- A palpable swelling or lump in the abdomen (usually on one side) discovered by chance by parents or doctor
- Slightly swollen belly
- Possible gastrointestinal problems when the tumor pushes against organs, such as constipation or difficulty eating
- Usually no pain or physical discomfort
**What it means for daily life:**
Early-stage children usually feel normal. They play, eat and sleep like other children. However, the swelling is often discovered because parents or paediatricians feel abnormal during an examination, or because a belly photo or ultrasound was accidentally taken for another reason.
**Figures about this phase: **
Approximately 40— 50% of all children with neuroblastoma already have metastatic disease (see further stage) at the time of discovery. The other half has illness that is confined to the abdominal cavity or chest. Survival at this early stage is significantly better than at more extensive stages. For children under 18 months of age with limited illness, the five-year survival rate is roughly 80— 90% (global data, 2020—2023).
**Important: ** These figures apply to large groups of children. Individual prognosis depends on many factors, including genetic characteristics of the tumor (such as MyCN enhancement) and age.
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Local extensive stage (growth into surrounding tissues)
When the tumor grows larger but has not yet spread to distant parts of the body, one speaks of locally extensive disease. The tumor then presses against neighboring organs more often or grows in the space between the lungs or abdominal organs.
**Observable phenomena: **
- More visible or palpable abdominal swelling
- Pain or discomfort in the abdomen or chest
- Constipation, which is more difficult to treat
- Possible difficulty urinating or stuhlgang (if the tumour pushes against the kidneys or intestines)
- Shortness of breath or slight tightness (in case of tumors in the breast)
- Tiredness and loss of appetite
- Pallor (due to possible anemia)
- Fever without clear infection
**What it means for daily life:**
Children may now have more difficulty with normal activities. They may want to play less, fatigue more quickly, and eat worse. Parents notice that their child no longer looks like themselves — quieter, sleepier, less lively. When there is pain, it may be difficult for the child to concentrate at school or sit up for long periods.
**Figures about this phase: **
Exactly how long this stage lasts varies greatly. Some children have symptoms for several weeks, others for months. For children aged 1—5 years with locally extensive disease without further metastases, the five-year survival rate is approximately 50— 70% (depending on other risk factors; global data, 2018—2022).
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Metastatic stage (spread to distant sites)
This is the most advanced stage. The tumor has spread to other organs, usually the bones, bone marrow, liver, lungs, or skin.
**Observable phenomena: **
- All symptoms of the locally extended stage, but more severe
- Bone pain or leg and arm swelling (if bone marrow is affected)
- Bruises, nosebleeds or other bleeding disorders (due to affected blood cells)
- Swollen lymph nodes in the neck, armpit, or groin
- Skin lumps or a pusture-like rash (especially in neuroblastoma with skin metastases)
- Possibly swollen liver (palpable on the right side of the abdomen)
- Severe tiredness and pallor
- Weight loss or stunted growth
- Fever that persists
- In rare cases: uncoordinated eye movements or spastic reactions (opsoclonus-myoclonus syndrome), involuntary muscle contractions
**What it means for daily life:**
Children feel considerably sicker. They may have pain in multiple places, are very tired and have difficulty with daily activities such as going to school, playing or eating independently. If the bone marrow is involved, infections can develop more easily and the child may feel frequently flu-like. Daily life is completely dominated by the disease.
**Figures about this phase: **
This is the most severe stage. For children older than 18 months with metastatic neuroblastoma (high-risk disease), five-year survival without treatment is virtually 0%. With intensive treatment — chemotherapy, radiation, stem cell transplantation — five-year survival is approximately 40–50% for this group (global data, 2018–2023). However, this varies greatly depending on age, genetic characteristics of the tumor and how well the child responds to treatment.
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Treatment phase: side effects and symptoms from therapy
Once treatment begins (chemotherapy, radiation, stem cell transplantation or immunotherapy), new symptoms appear that result from the therapy itself.
**Observable phenomena: **
- Nausea and vomiting (very frequent)
- Mouth sores or mouth pain, difficulty eating
- Hair loss (with some chemotherapy regimens)
- Infections due to reduced immunity (fever, inflamed wounds)
- Skin problems in areas where radiation was given
- Extreme fatigue and sleepiness
- Anemia (even more fatigue, shortness of breath)
- Diarrhea or severe constipation
- Coughing or shortness of breath (if lung problems develop as a side effect)
- Kidney problems (more frequent urination, unusual urine values)
- In some cases: allergic reactions to medications
**What it means for daily life:**
The treatment phase is physically and mentally taxing. Children spend much time in the hospital, are frequently ill from medications, experience pain or discomfort from injections and infusions, and cannot go to school. Parents must remain constantly alert to infections or serious side effects.
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Remission phase (after treatment, with positive response)
When the tumor has shrunk significantly or disappeared after treatment, this is called remission. This does not necessarily mean the tumor is completely gone; sometimes small remnants may still be visible.
**Observable phenomena: **
- Gradual disappearance of symptoms: pain decreases, appetite returns, energy increases
- Swelling in abdomen, legs or other areas decreases
- Skin and mouth problems heal
- Hair growth begins again
- General sense of recovery and return to normal energy
- Possible treatment side effects that persist (fatigue, skin sensitivity)
**What it means for daily life:**
This is an important turning point. Children slowly return to normal activities: going to school, meeting friends, playing. Parents feel less constantly panicked, although regular check-ups and examinations remain necessary to detect recurrence (return of the tumor) early.
**Figures about this phase: **
The median time to remission (if it occurs) is on average 3–6 months after the start of treatment, depending on the treatment regimen. Not all children achieve remission; approximately 70–80% of children with high-risk neuroblastoma respond well to initial chemotherapy. Children who go into remission have — statistically — better survival, but the risk of recurrence remains, particularly in the first 2–3 years.
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Recurrence or progression (return of disease)
Unfortunately, neuroblastoma can return, either because tumor was still present or as a completely new growth. This can happen months to years after treatment.
**Observable phenomena: **
This depends on where the tumor returns:
- Renewed abdominal or chest pain
- Returned swelling in abdomen or body
- New or recurring bruising, nosebleeds
- Fatigue that increases
- Reduced appetite, weight loss
- Bone or joint pain (if bone marrow recurrence)
- Shortness of breath
- Neurological symptoms (difficulty with balance, vision problems) if the nervous system is affected
**What it means for daily life:**
The recurrence of symptoms is an emotional blow. Children may be afraid of intensive treatment again. Parents feel reborn hope and fear at the same time. New treatment (if possible, sometimes experimental therapies) requires many hospital visits and procedures again.
**Figures about this phase: **
Approximately 15–20% of children with high-risk neuroblastoma experience recurrence, usually within 2 years after initial treatment. For children with recurrence, survival without further successful treatment is limited. With retreatment, five-year survival after recurrence is approximately 10–20%, demonstrating how serious recurrence is (global data, 2018–2023).
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When to contact your doctor
It is important to keep regular appointments and contact immediately if:
- **Fever above 38.5 °C** (especially if your child is receiving or has recently received chemotherapy)
- **Severe bleeding** (nose, gums, heavily bleeding wound)
- **Sudden severe pain** that does not diminish with home remedies
- **Severe nausea or vomiting** that makes eating and drinking impossible
- **Shortness of breath, breathlessness** or very rapid heartbeat
- **Strong increase in swelling** in abdomen, legs or other places
- **Neurological changes:** sudden lack of coordination, movement disorder, vision problems or loss of consciousness
- **Signs of infection** at sites with infusion, wound or other places
- **Persistent fever without clear cause**
- **Severe fatigue or unusual behaviour:** if your child is very different from normal
Regular follow-up appointments are essential, even if your child feels well, because tumours and recurrences do not always cause noticeable symptoms before they are detected on examination or scan.
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_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._