If your paediatrician suspects that your child may have neuroblastoma there will be a number of confirmatory tests that will need to be done. These include urine tests to check for compounds that are secreted by the neuroblastoma; ultrasound scans and MRI scans. Another diagnostic scan that is used is called MIBG (metaiodobenzyl guanidine) which is a radioactive molecule, given in an injection, which attaches to neuroblastoma cells and then makes them visible when scanned.
Like all cancers neuroblastoma can spread to other parts of the body, the most common areas include the liver, skin, and bones. There are different “stages” of the disease which describe how far it has grown and spread and clinicians use this staging to decide the best treatment paths for the child.
Tumour is localised and has not spread. It can be almost completely removed by surgery.
The tumour is localised and has not spread but it cannot be completely removed by surgery. This is often due to of the position of the tumour meaning total tumour removal would cause damage to organs or major blood vessels.
The tumour has begun to spread to nearby lymph nodes but not distant parts of the body.
This is a tumour that has spread to distant parts of the body, often including the liver, skin, or bones. This stage is usually designated as “high risk” and will often need to be treated with chemotherapy, surgery, radiation and potentially a stem-cell transplant. Once this treatment is complete, children tend to undergo “maintenance treatment” to reduce the likelihood of the cancer returning. This involves treatments to target the cancer cells and stimulate the immune system. Relapse in this risk group is common and families can access clinical trials, such as immunotherapy, while their child is in remission to reduce the risk of the cancer returning.
This is a “special” stage unique to this type of childhood cancer. It refers to a type of the disease that presents as a primary tumour and may have spread to local lymph nodes, but only on one side of the body. There will be no spread to the bones and less than 10% bone marrow cells will be neuroblastoma. This type of disease has been known to spontaneously regress into a benign state and so often the only course of action will be to maintain close observation of the child to ensure nothing changes.
When families receive a diagnosis of neuroblastoma they can often experience confusion, shock and bewilderment. These are normal reactions. It is important to remember that it is not your fault your child has cancer and is not the result of anything you have, or have not done. It is likely that you have never heard the word ‘neuroblastoma’ before and may not have even realised that children can get cancer.
In the days surrounding diagnosis you may have met new specialists, doctors, nurses and support staff. These staff are experienced and will understand that families may need some time to absorb what has happened. Nobody is expected to understand complicated cancer treatments straight away and health professionals are very used to having to repeat themselves and rephrase things in a way that helps parents to understand. It is very common to find it difficult to take in and remember information for a length of time after diagnosis.
If your first language is different from that of your treatment team, if possible arrange for a friend or family member to translate for you. If this isn’t possible, the hospital will help you find an appropriate interpreter.
Many parents cannot think of any questions to ask when a doctor is there, but think of all sorts of things as soon as they have gone. It is a good idea to write down questions that occur, to be discussed at a later date. Some people are shy of questioning or approaching members of the treatment team, feeling that they are too busy. They probably are very busy, but they will want to know and discuss any family might have.