17226 Mibg Scan

Overview

An MIBG scan is a special kind of imaging test. It uses a tiny amount of a radioactive tracer (a weak radioactive substance) that is attached to a chemical called MIBG. MIBG is taken up by certain types of nerve cells, so the tracer travels around your body and collects in those cells. A special camera then takes pictures to show where the tracer has gathered. It is mainly used to look for rare tumours that grow from nerve tissue, such as neuroblastoma in children and phaeochromocytoma (a tumour of the adrenal gland, a small gland above the kidney) or paraganglioma in adults. The scan itself is not a treatment and it does not hurt. It simply helps your medical team see what is happening inside the body.

An MIBG scan is not an everyday test. It is a specialist scan used in a fairly small number of people, usually those being investigated or treated for particular nerve-tissue tumours. Because the tumours it looks for are rare, most people will never need one. If your doctor has suggested it, it usually means they want a clearer picture of a specific concern.

It is used in people of all ages. In children it is most often used to look for neuroblastoma, a rare childhood cancer that usually appears in the first few years of life. In adults it is used more often for phaeochromocytoma or paraganglioma, and sometimes for other rare nerve-related tumours. Some of these tumours run in families, so if a close relative has one, your doctor may talk to you about testing.

Symptoms

Common symptoms

• Many people who have an MIBG scan have no obvious symptoms at all. The scan may be done as part of follow-up or because of a result from another test.
• A lump or swelling in the tummy (abdomen) that can be felt
• High blood pressure that is hard to control, sometimes in sudden surges
• Episodes of sweating, a racing heartbeat, headaches and feeling anxious or shaky
• Bone pain, or pain that does not go away
• Unexplained tiredness, weight loss or generally feeling unwell

Symptoms in children

• A swollen or firm tummy
• Poor feeding, weight loss or not growing as expected
• Being very unsettled, irritable or unusually sleepy
• Bruises or puffiness around the eyes, or bulging eyes
• Lumps in the neck, chest or tummy that can be felt
• Bone pain, limping, or a child who stops wanting to walk or play
• High blood pressure, which can cause headaches, sweating or a fast heartbeat

Symptoms in older adults

• Sudden 'spells' of very high blood pressure, often with a pounding headache, sweating and a racing heart
• Blood pressure that stays high even with several medicines
• Unexplained weight loss or loss of appetite
• Feeling unusually anxious, shaky or unwell for no clear reason
• Tiredness, weakness or palpitations (being aware of your heartbeat)
• Notes: some people, especially older adults, may have only mild symptoms, and the tumour may be found when looking into something else

Causes

Main causes

• An MIBG scan is done to look for tumours that come from nerve tissue which naturally takes up MIBG. These include neuroblastoma (a rare childhood cancer), phaeochromocytoma (a tumour of the adrenal gland) and paraganglioma (a tumour of similar nerve tissue elsewhere in the body).
• It may be used when a first test, such as a scan or blood test, has shown something that needs a closer look.
• It may be used to see how far a known tumour has spread, or to check how well treatment is working.
• It may be used to look for a tumour that has come back after treatment.
• Remember: having the scan does not mean you or your child definitely has a tumour. It is one piece of information, and your team will look at it alongside other tests.

Risk factors

• Some of these tumours are linked to inherited conditions that run in families. If a close relative has had one, tell your doctor.
• Age matters: neuroblastoma is most common in babies and young children, while phaeochromocytoma and paraganglioma are more often found in adults.
• Some rare genetic changes, found through blood tests, can raise the chance of these tumours.
• Having had one of these tumours before means follow-up scans may be recommended.

When to see a doctor

See a doctor urgently if:

• You have a sudden, severe headache with very high blood pressure, sweating and a racing heart
• You or your child has a new lump in the tummy, neck or chest that is getting bigger
• Your child has bruising around the eyes, bulging eyes, or is losing weight and feeding poorly
• You feel very unwell after a scan — for example a fever, a rash, dizziness or breathlessness

Book a routine appointment if:

• You have been told you need an MIBG scan and you want to understand why
• You are unsure which of your medicines to take before the scan
• You or your child feels anxious about the test and would like to talk it through first
• You are pregnant, might be pregnant, or you are breastfeeding — tell the team before the day of the scan
• You have questions about the results or what happens next

Diagnosis

An MIBG scan is not a diagnosis on its own. It is one test that your doctor puts together with your history, an examination, blood and urine tests, and other scans. The result helps your team decide whether a tumour is present, where it is, and whether it has spread. Sometimes the scan is repeated later to see how things are changing.

Tests that may be done

• A physical examination and a conversation about your symptoms and family history
• Blood tests, including tests for hormones that some of these tumours release
• A 24-hour urine collection, where urine is collected over a day to check for hormone breakdown products
• CT or MRI scans, which show the shape and size of any lump
• The MIBG scan itself — a nuclear medicine scan that shows where nerve-tissue cells have taken up the tracer
• Sometimes a biopsy, where a small sample of tissue is taken and looked at under a microscope
• Genetic (inherited) testing in some families

What to expect at your appointment

On the day, you or your child will have a small injection into a vein, usually in the arm or hand. This is the only needle involved. You then wait a few hours while the tracer spreads through the body — this may be a few hours for one type of tracer, or a day or more for another. You will then lie on a comfortable bed while a large camera moves slowly around you. The pictures usually take between 30 and 90 minutes, and you need to lie fairly still. Some people need more than one set of pictures over one to three days. The scan does not hurt, but lying still can feel long, so bring a favourite toy, music or a book if you can. Your team may give you or your child a tablet or liquid to protect the thyroid gland (a small gland in the neck) before the tracer — this is routine. You may also be asked to drink plenty of fluids and to empty your bladder before the pictures.

Treatment

An MIBG scan does not treat anything — it is a test that guides your care. What happens next depends entirely on the result. If the scan is clear, that is reassuring and your team will explain whether any follow-up is needed. If it shows something, your team will discuss the options with you and your family, and you will be given time to ask questions.

Self-care at home

• Follow the written instructions your hospital gives you — they are specific to your scan.
• Tell the team about all your medicines, including ones you buy without a prescription, herbal remedies and supplements. Do not stop any medicine on your own; ask the team first, as some medicines affect the scan.
• Tell the team if you are pregnant, think you might be, or are breastfeeding.
• Drink plenty of water after the scan and empty your bladder often — this helps clear the tracer from your body.
• Wash your hands well after using the toilet for the rest of the day, and flush the toilet twice.
• For a short time, your team may ask you to keep close cuddles with babies and pregnant women brief. Ask them for exact advice — the amount of radiation is small and the guidance is simple.
• Bring something to help you or your child stay still and calm: a favourite toy, a blanket, music or headphones.
• Arrange for someone to drive you home if you feel nervous or if your child may need to be sedated.

Medical treatments

Treatment depends on what the scan shows and is planned by a specialist team. Options for nerve-tissue tumours generally include surgery to remove the tumour, chemotherapy (medicines that kill cancer cells), radiotherapy (targeted X-rays that destroy cancer cells), and newer targeted treatments that focus on specific features of the tumour cells. Some treatments aim to control the hormones the tumour releases, which can ease symptoms such as high blood pressure and sweating. In some centres, a form of internal radiotherapy using a radioactive substance that targets these nerve cells may be used — your specialist will explain whether this is suitable. Every plan is tailored to the person, their age, the type and position of the tumour and their own preferences.

When is surgery considered?

Surgery may be offered if a tumour is found and can be safely removed. It is often part of a wider plan and may come before or after other treatments. Your surgical team will explain the benefits, the risks and what recovery involves, and you will have time to decide together.

Living with this condition

For most people the MIBG scan is a single appointment, or a few appointments over a few days, and life carries on afterwards. The small amount of tracer leaves your body over hours to a few days, mostly in your urine. After the scan you can eat, drink and go about your normal day, unless your team tells you otherwise. If you have a condition that needs ongoing monitoring, your team will explain the follow-up plan and who to contact with questions.

Lifestyle tips

• Keep a simple note of any symptoms — such as headaches, sweating or blood pressure readings — to share with your team.
• Take your medicines as prescribed and do not change them without advice.
• Rest when you need to, especially on scan days, which can be tiring.
• Keep up gentle everyday activity if you feel well, and ask your team about any limits.
• Avoid alcohol heavily and avoid smoking, as both can affect blood pressure.
• Stay in touch with your GP and specialist team, and go to your follow-up appointments.

Diet and exercise

There is no special diet needed for an MIBG scan, though your team may ask you not to eat for a few hours before the injection — they will tell you exactly. Drinking plenty of water afterwards helps flush the tracer out. If you have high blood pressure, eating a balanced diet with less salt and staying active can help. Gentle exercise such as walking is good for most people; if you are having treatment, ask your team what level of activity is right for you.

Mental health and emotional wellbeing

Waiting for a scan and its results can be an anxious time, and it is common to feel frightened or to find it hard to sleep. Parents often feel this most for their children. These feelings are normal and nothing to be ashamed of. Talking to someone — a partner, friend, GP or the hospital's psychology team — really does help. If you or your child feel very low or overwhelmed, please reach out for support.

Prevention

You cannot prevent the need for an MIBG scan — it is a test, not an illness. What you can do is prepare well: follow the instructions, tell the team about your medicines, and ask questions. If you are concerned about a family history of these tumours, talk to your GP — some inherited conditions can be looked for in relatives, and finding something early usually means more options.

Screening programmes

There is no general screening programme for these rare tumours. However, if a family member is known to carry a gene change linked to these tumours, your doctor may offer a referral for genetic counselling and regular check-ups. If you are pregnant or breastfeeding, tell the scan team, as extra advice may be needed.

Complications

If left untreated

• If a nerve-tissue tumour is present and not investigated, it may continue to grow or spread to other parts of the body.
• Some of these tumours release hormones that can cause dangerous surges in blood pressure, which need urgent medical care.
• Untreated tumours can cause ongoing pain, tiredness, weight loss and poor growth in children.
• Note: the scan itself is very safe. The small radiation dose is carefully controlled and kept as low as possible, and serious reactions to the tracer are rare.

Long-term outlook

For most people the scan brings clarity, and knowing what is going on is the first step towards the right care. Many of these tumours can be treated successfully, particularly when they are found early and when the whole team works together. Outcomes vary from person to person depending on the type and spread of any tumour, your age and general health. Your specialist team can talk you through what to expect in your own situation — honestly, kindly and without rushing you.

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