Neuroblastoma Cancer Myths vs Facts

When families are given a frightening diagnosis, incorrect information is quickly shared – making a very difficult time even more confusing. Family and friends, meaning well, will share claims which have not been checked, and looking on the internet can bring up conflicting information from sources that aren’t reliable. As neuroblastoma is a fairly unusual cancer, there is a lot of misunderstanding about what causes it, how it’s treated, and what people can reasonably expect. 

Being able to tell what is true from what isn’t, gives families the ability to make decisions based on what science shows, not on what they are afraid of. Doctors regularly come across wrong ideas which cause people extra worry, or cause them to make decisions which could actually be damaging. This article deals with common myths directly, and replaces bad information with correct information – which is based on proof – about this cancer in children. 

Myth: Parents Caused Their Child’s Cancer 

A lot of parents feel awful, thinking they did something while they were pregnant which caused their child’s terrible illness. This very bad feeling of guilt comes from the wrong idea that neuroblastoma is the result of things in the environment which could have been avoided, or things parents did. However, scientific research has clearly shown that what causes neuroblastoma is random changes in genes which happen by themselves while a baby is normally developing in the womb. In the great majority of cases, what parents eat, what medicines they take, or what they are exposed to in the environment, does not cause the illness to develop. 

The changes in the genes happen as normal mistakes during the very fast division of cells in the developing baby. These genetic accidents happen purely by chance, and are not at all connected to anything parents did, or didn’t do. Even in the rare cases where the illness is passed down in families – only 1 to 2 percent of cases – the changed genes are unknowingly passed on by both parents. Parents should stop blaming themselves for something they didn’t deserve to feel guilty about, and understand that this cancer develops through biological accidents which no one can control. 

Myth: Childhood Cancer Means Death 

What people have experienced in the past shapes what they think, and many people remember when all childhood cancers were always fatal – only a few decades ago. Modern improvements in treatment have changed neuroblastoma in children from something with no hope, to something which can be cured in most cases. At the moment, over 80 percent of patients survive overall, when all the risk groups are put together, and have completed treatment. Patients at low risk are cured in over 95 percent of cases, and need very little treatment. 

Even people with the high-risk illness – which used to be considered fatal – now have about a 50 to 60 percent chance of surviving, thanks to strong treatment. Babies with widespread Stage MS disease often need very little, or no, treatment, as the illness gets better by itself. These great results are the result of decades of research being used to improve treatment plans, and create new treatments. 

Myth: Alternative Treatments Can Cure Neuroblastoma 

Sometimes, families who are desperate will try treatments which have not been proven – promising miracle cures, but without the poisoning effects of normal chemotherapy. These methods – special diets, herbal supplements, or energy treatments – have no scientific proof that they work. If proven, normal treatment is delayed while these alternatives are tried, the illness may get worse and become impossible to cure, and will be fatal. No alternative treatment has ever shown it can cure neuroblastoma in proper scientific studies. 

Treatments which support normal treatment are very different from alternative treatments which replace standard, proven care. Things like acupuncture, massage, or meditation can reduce the side effects of treatment, and improve the quality of life, with the therapies. Neuroblastoma chemotherapy, with surgery, radiation, and immunotherapy, offers the only way to cure the illness – and this is based on scientific proof. 

Myth: Sugar Feeds Cancer 

This idea is very common, and causes parents to restrict their children’s diets without needing to, when good nutrition is most important during treatment. All cells – including healthy ones – use glucose for energy, in completely normal ways. Cancer cells do use glucose differently, but taking sugar out of a diet does not make the tumours get smaller. When a patient is already having trouble getting enough calories during strong treatment, severely restricting carbohydrates risks dangerous malnutrition. 

Children who are being treated need good nutrition to help them get better, to help their immune system, and to allow them to continue to grow during the treatment. A balanced diet, with enough calories, protein, vitamins, and minerals, helps people to tolerate treatment, and to get better. Limiting sugar as part of a healthy diet is sensible, but extreme restriction does harm without any benefit. 

Myth: Radiation Should Always Be Avoided 

Because people worry about radiation causing secondary cancers, some families refuse to allow the radiation therapy which is recommended. While radiation does carry a small risk of cancer in the long term, this is much less than the risk of the neuroblastoma coming back if the patient does not have enough treatment. Modern radiation techniques give exact doses to the tumours, and at the same time reduce the amount of exposure to the tissues around them. The risk of secondary cancer is between 1 and 5 percent over a whole lifetime, and happens many years later. 

Without radiation, many patients at high risk will immediately get worse and die from the neuroblastoma itself. Treatment teams carefully weigh the risks against the benefits, and only recommend radiation when it is clearly needed to cure the patient. Refusing essential radiation because of theoretical risks in the future, means giving up the chance of surviving now. Hospitals such as Fortis Healthcare, Gurgaon, use sophisticated planning methods to lower risk and control tumours well. 

Myth: All Neuroblastomas Behave Identally 

This is too simple, and doesn’t allow for the huge variety in neuroblastoma diagnoses. The genetics of the tumour, the patient’s age, and how far the disease has spread all make very different situations, which need treatments designed for them. Some babies with widespread disease only need to be watched, as the disease goes away on its own, without any treatment. Other children, with disease in one place, need strong treatment because of aggressive genetics, which include MYCN being multiplied. 

Systems of risk assessment put patients into groups, based on factors that correctly predict how the disease will behave and what the result will be. Low, medium, and high-risk groups get very different levels of treatment, balancing a cure with the harm treatment can do. This personal approach recognises that the disease is biologically varied, and gets the best results, while avoiding giving unnecessary treatment in cases that are likely to be favourable. 

Myth: Chemotherapy Always Causes Lasting Harm 

Worry about the harm chemotherapy can do sometimes makes families refuse, or delay, vital treatment that could save lives. Although treatment does have side effects, many of these are not permanent, and get better completely. Hair loss, feeling sick, and low blood counts all get better when treatment is finished, in all patients. Most children get back to normal health and development after successful treatment, with no lasting problems. 

Some late effects – like loss of hearing, kidney problems, or trouble with fertility – do happen, especially with strong treatments. Modern changes to treatments aim to reduce these long-term problems, while keeping good rates of cure. Regular checks for survivors find late effects early, and allow actions to greatly reduce the long-term impact. 

Myth: Brothers and Sisters Have a High Risk of Cancer 

Most parents worry if their other children might get neuroblastoma, after one child in the family has been diagnosed. Most cases happen by chance, and have nothing to do with inherited factors. Brothers and sisters of children with the disease only have a slightly higher risk than people in general. Routine checking of healthy brothers and sisters is no use, as watching them does not improve their results. 

Rare cases where the disease is inherited – about 1 or 2 percent – involve specific genetic faults passed from the parents. Genetic advice and testing can find these families, and allow proper watching of relatives who are really at risk. Most families are reassured that the neuroblastoma happened as a one-off, and is unlikely to happen again. 

Myth: When Treatment Finishes, Medical Care Ends 

Finishing treatment is a big step, but not the end of medical care relating to the cancer. Long-term watching for the disease coming back, and for late effects of treatment, goes on for many years. Pictures and blood tests continue regularly – at first often, then less and less over the years. Most returns of the disease happen within two years, though late returns are possible, and need watching for. 

Survivorship programmes deal with late effects including problems with growth, learning difficulties, hormone shortages, and other cancers. Many of these effects appear years after treatment, so continued awareness is needed throughout childhood and into adult life. People who have survived cancer need to understand, all their lives, the health problems that might be connected to their treatment. 

Myth: Low-Risk Disease Needs Strong Treatment 

More treatment does not necessarily improve results for disease that is biologically favourable, and has a good natural history. Research shows that doing as little as possible gets excellent results in low-risk patients, while avoiding harm. Some children only need surgery to remove the tumour, with no chemotherapy or radiotherapy. Others benefit from only being watched, when the tumours go away on their own over time. 

Giving too much treatment causes harm without helping, and exposes children to harm that does not improve their chances of survival. Treatment that is suited to the risk – matching the strength of treatment to the biology of the disease – gets the best results in a sensible way. It is hard for worried families to trust in biological markers that suggest less treatment at first.