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I D Cancer Center
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  • Neurofibromatosis

Neurofibromatosis Treatment & Care | I D Cancer Center Lucknow

Overview

Neurofibromatosis (NF) is a group of genetic conditions that cause tumours to form on nerves throughout the body. Most of these tumours are benign (non-cancerous), but in some cases they may cause complications or transform into malignant tumours.

The two most common forms are:

  • NF1 (Neurofibromatosis Type 1) – usually appears in childhood

  • NF2 (Neurofibromatosis Type 2) – often identified in late adolescence or adulthood

A rare form, Schwannomatosis, causes painful tumours in peripheral nerves.

At I D Cancer Center, our team provides accurate diagnosis, tumour monitoring, symptom management, and expert oncology care when needed.

Causes & Classification

Neurofibromatosis is primarily a genetic disorder, often inherited from a parent. However, in up to 50% of cases, NF1 or NF2 may occur due to new (spontaneous) genetic mutations.

NF1 (Most Common)

Caused by mutation in the NF1 gene.
Often diagnosed in early childhood.

NF2

Caused by mutation in the NF2 gene.
Leads to vestibular (hearing) nerve tumours.

Schwannomatosis

Rare type affecting peripheral nerves, usually in adults.

Common Symptoms

NF1 Symptoms

  • Café-au-lait spots (light brown skin patches)

  • Skin neurofibromas (soft lumps)

  • Freckling in armpits or groin

  • Learning difficulties

  • Bone deformities

  • Vision problems (optic nerve glioma)

NF2 Symptoms

  • Gradual hearing loss

  • Ringing in the ears (tinnitus)

  • Balance difficulty

  • Facial weakness

  • Vision changes

  • Numbness in limbs

Schwannomatosis Symptoms

  • Severe nerve pain

  • Numbness or muscle weakness

  • Localized tumours along peripheral nerves

If symptoms worsen or new lumps grow rapidly, medical evaluation is essential.

Diagnosis at I D Cancer Center

Diagnosing NF requires a combination of clinical assessment and imaging. We provide:

  • Detailed physical examination

  • Genetic testing for NF1/NF2 mutations

  • MRI of brain and spine to detect nerve tumours

  • CT scan for bone abnormalities

  • Ophthalmologic evaluation (important in NF1)

  • Hearing tests (important in NF2)

  • Biopsy if any tumour shows suspicious behaviour

Early diagnosis helps in monitoring progression and preventing complications.

Treatment Options

There is no single cure for neurofibromatosis, but most patients lead normal lives with regular monitoring and supportive care. Treatment focuses on managing symptoms, controlling tumour growth, and treating complications.

1. Observation & Monitoring

Most NF tumours are benign and only require periodic follow-up.

2. Surgery

Performed when:

  • Tumours cause pain or disfigurement

  • Tumours compress vital structures

  • Suspicion of cancerous change (malignant peripheral nerve sheath tumour – MPNST)

3. Radiation Therapy

Used selectively, especially in NF2 patients with vestibular schwannomas or malignant tumours.
I D Cancer Center offers:

  • IMRT

  • IGRT

  • VMAT
    for safe, precise treatment.

4. Chemotherapy / Targeted Therapy

Used in:

  • Optic nerve gliomas

  • Malignant peripheral nerve sheath tumours

  • Certain fast-growing tumours

  • Targeted drugs (e.g., MEK inhibitors) in selected cases

5. Pain & Symptom Management

Especially important in Schwannomatosis.
Includes medication, physiotherapy, and nerve-block options.

6. Genetic Counseling

Families benefit from understanding inheritance patterns and long-term risks.

Life After Diagnosis

With regular follow-up, most NF patients enjoy normal, productive lives.
Our survivorship plan includes:

  • Yearly MRI scans (as needed)

  • Vision & hearing monitoring

  • Psychological counselling

  • Pain management

  • Physiotherapy & rehabilitation

  • Support for learning difficulties in children

At I D Cancer Center, we guide patients through every stage with compassion and expertise.

When to Seek Urgent Care

Patients should contact a specialist if they notice:

  • Rapid tumour growth

  • Sudden hearing loss

  • Severe headaches

  • Persistent pain

  • Weakness or numbness

  • Change in vision

  • Difficulty walking

These may indicate tumour progression or complications.

Why Choose I D Cancer Center?

  • Expert oncology team led by Dr. Sunil Kumar, Radiation Oncologist

  • Advanced radiotherapy technology for complex tumours

  • Comprehensive evaluation & tumour monitoring

  • Multidisciplinary care (oncology, neurology, genetics, rehabilitation)

  • Compassionate support for patients & families

  • Easy access in Sushant Golf City, Lucknow