As a twitter addict, I get to know lots of people, many of whom have been affected by cancer in some way. Lately I have noticed that a lot of parents are tweeting to raise awareness and fund for children affected by neuroblastoma. Now I’m not exactly clueless when it comes to childhood cancer but I don’t know much about this specific type. It does seem to affect a lot of children which makes it one of the most cruellest cancers around, in my opinion. So this post is dedicated to all the children that have been affected by neuroblastoma; those that have survived, those that are still fighting and those that have sadly been lost. You are all in my thoughts xxx
What is Neuroblastoma:
Neuroblastoma is the second most common solid tumour found in children and most of the children diagnosed are under five years old. It is a cancer that affects the specialised nerve cells known as neural crest cells. These cells play an important part of the development of the nervous system. Neuroblastoma can occur anywhere in the body but it is most often found in the adrenal glands, which are found in the abdomen. These glands are very specialist and can be found above the kidneys. The release hormones that are used for maintaining blood pressure and enabling us to respond to stress. neuroblastoma can also occur in the nerve tissue along the spinal cord in the neck area as well as the chest and pelvis to name a few.
Causes, Signs and Symptoms of Neuroblastoma:
As with most cancer types, the exact causes of neuroblastoma are no yet known. The first symptoms are usually quite vague and it can be difficult to know something is wrong. These symptoms include loss of appetite, tiredness and a pain in the bones. There are other symptoms that may occur too:
* If the tumour is affecting the abdomen that the stomach may be swollen, the child may be suffering from constipation, they may also have difficultly weeing and they may have high blood pressure.
* If the tumour is affecting the chest area then the child may be breathless and have difficulty swallowing.
* If the tumour is affecting the neck then the child may have a visible lump and they may have difficulty swallowing or breathing.
* If the tumour is pressing on the spinal cord then the child may have weak legs and an unsteady walk. If they are not yet able to walk then they may have reduced leg movements and not crawl as much. They may also suffer constipation and pass urine infrequently.
* Sometimes small, blue coloured lumps will appear on the skin. These are deposits of neuroblastoma.
* Very rarely, children may suffer from jerky eye and muscle movements and generally be unsteady on their feet.
If a child is suffering from suspected neuroblastoma, they will have to undergo a series of tests to confirm the diagnosis. These tests can include blood and urine tests, bone marrow tests, x-rays, CT’s, MRI’s and MIBG scans. The tests will allow the doctors to discover if there is neuroblastoma present, what area of the body it affects, whether it has spread and the grading of the tumour. This is known as staging. Treatment will depend on the stage. The stages of neuroblastoma are:
Stage one: The cancer is localised to one area of the body and there is no evidence that is has spread. It can be completely removed by surgery.
Stage Two A: The cancer is localised and has not yet started to spread but complete removal by surgery is not possible.
Stage Two B: The cancer is localised but has begun to spread to nearby lymph nodes
Stage Three: The cancer has spread into surrounding organs but has not spread to distant areas of the body.
Stage Four: The cancer has spread to distant lymph nodes, bones, bone marrow, the liver, skin or other organs.
Stage Four S (Special Neuroblastoma): This is found in babies under one years of age. The cancer is localised at between stage one to two B but it has started to spread to the liver, skin or bone marrow.
A newer staging system has been developed and introduced by the International Neuroblastoma Risk Group (INRG) and is beginning to be used more widely. It is designed to look at “image defined risk factors” and whether or not they are present in tumours. These factors are detected by scans and help doctors to understand the extent of the disease. A doctor can obviously explain this in more detail.
Treatment will depend on the size, biology and position of the tumour, whether grading and staging of the cancer and the age of the child. Surgery is usually the option for localised tumours whilst chemotherapy is also an option. High dose chemo with stem cell rescue is also used and so is monoclonal antibody treatment. Radiotherapy and Photo Dynamic Therapy are also option. This can be explained by a doctor.
Watching a child suffer from cancer is one of the worst things you can ever experience. There are so many different emotions involved and it is an exhausting process, both physically and mentally. Help and support is available so please do take advantage of it should you ever find yourself in this horrific situation. Some support groups and organisations for neuroblastoma are:
CLIC Sargent: I love this charity and take part in their yearly big bucket collections. They were very helpful and supportive to our family whilst Georgie was ill and are genuinely a fabulous charity for children with cancer and their loved ones. They offer very practical help and support to children and young people under the age of twenty one. http://www.clicsargent.org.uk/Home
Neuroblastoma Society: This organisation offers the chance for parents to give each other mutual support and help as well as comfort. They have a very useful information booklet which you can download straight from their website. http://www.nsoc.co.uk/
Children’s Cancer and Leukaemia Group (CCLG): the CCLG provides research and care for children with cancer and their parents. They have twenty one specialist centres across the UK. http://www.cclg.org.uk/
If your child or a child that you love is diagnosed with neuroblastoma then my heart goes out to you. There are so many families in this horrific situation across the UK. Please know that there are lots of people out there trying to find ways to help these children survive their battles. Neuroblastoma is a very cruel cancer and I sincerely hope ways of beating this disease and preventing it from occurring in the first place are found in the near future.