I think most people have heard of Bradley Lowery by now, but just in case you haven’t, he was a young boy who touched the nation’s hearts as a young football fan stricken by a rare childhood cancer. He united the football world with “cancer has no colours” as many tried to create lovely experiences and memories for him during the last few months of his life.
Sadly Bradley passed away on Friday 7th July 2017 at the age of six. Like so many other people across the UK, I have been touched by Bradley’s cheeky smile and he has inspired me to restart this blog. Today’s post is dedicated to this wonderful boy and his family.
What is Neuroblastoma?
Neuroblastoma is a rare childhood cancer, mostly affecting children under the age of five. In the UK there are around one hundred cases diagnosed per year. It is rarely seen in older children, teenagers or adults.
Neuroblastoma gets its name from the nerve cells it develops in – neuroblasts:
*neuro = nerves
*blast = early developed cells
*oma = tumour
Neuroblastoma usually starts in the abdomen – in the adrenal glands or the nerve tissue found at the back of the abdomen. As with many cancers, it spreads to other parts of the body such as bones, liver and skin via the blood and lymphatic system. This is usually found in half of neuroblastoma sufferers.
Causes of Neuroblastoma:
Unfortunately not much is known about the causes of this cancer type at present, although research is being carried out. Around 1/100 cases will find a family history of this cancer type but this is very rare.
Symptoms of Neuroblastoma:
Symptoms for this cancer type, like most of them, will depend on which part of the body the cancer has started in. If the cancer has already spread then symptoms may appear in more than one place.
As neuroblastoma usually develops in the abdomen the most common symptom is a lump in the tummy, which can cause the child’s stomach to swell and cause discomfort and pain.
In the occasion that it affects the spinal cord it can cause numbness and loss of movement in the lower body, as well as weakness.
On rare occasions it can appear as a lump in the neck and can cause breathlessness or difficulty swallowing.
Neuroblastoma tumours usually spread to the bones which can cause pain and swelling as well as difficulty walking.
Any of these symptoms should be urgently investigated by a doctor. It is hugely important that any lumps found in children, especially those in the abdomen, are referred to a specialist within 2 days of being presented at A&E or to your GP. If you are concerned by symptoms found in your child, please push your medical professional for an urgent referral.
As with most cancers, there are a variety of tests which can be used to diagnose the cancer as well as determine its stage. These tests are not normally painful but some may require sedation, especially for young children.
Tests could include:
*Chest X Ray
*CT, MRI or Bone Scans
*A biopsy or bone marrow biopsy
*MIBG –this is a particular scan to diagnose neuroblastoma as they absorb a substance called MIBG. The doctor will attached a small amount of radioactive iodine to MIBG and inject it into the bloodstream. The neuroblastoma cells pick up the MIBG and the iodine shows up on the scan.
As with all cancers, treatment for neuroblastoma is dependent on the stage of the tumour, and the risk group of the patient – i.e. how likely is the cancer to return at a later date.
The most common treatment for this cancer type are:
*Surgery – the surgeon will try to remove the whole tumour, or as much as possible. If the tumour hasn’t spread then surgery may be the only treatment required, providing the surgeon is able to get the whole tumour and clear margins around it.
*Chemotherapy – This can be used to kill the cancer cells. Doctors may use two or three different types of chemo. The main side effects will include tiredness, hair loss, nausea and an increased infection risk. A central line will be inserted for the child to receive the chemo and will be kept in place for the duration of their treatment. We used to call Georgie’s his wiggly when he was little.
*Radiotherapy – Children with advanced neuroblastoma may require targeted radiotherapy, which is similar to the MIBG process I explained above. However, children needing this may require a stem cell transplant as the dose of radioactive iodine may damage the bone marrow. A stem cell transplant is done by doctors who collect some blood stem cells from the patient before treatment and store them until the child is ready to have them injected back into their body after treatment.
*Immunotherapy - This is a type of drug treatment used to help the immune system kill cancer cells. It’s a biological therapy which is often used if there is a high risk of the child developing neuroblastoma again.
Recurrent neuroblastoma (where the disease had been treated previously but has returned) depends on a number of factors. This can be treated the same way it was treated previously but usually the treatment is much more intense and will include a number of the treatments mentioned above. Clinical trial treatments may also be offered.
Long Term Effects of Neuroblastoma:
Your specialist should talk to you about the possible long term effects of cancer on your child. As treatments improve these effects are lessening but they are still there. The risks include fertility issues, hearing problems, changes in the heart and kidneys, growth problems and the risk of developing a second cancer. Childhood cancer sufferers should be closely monitored as they grow up and should have access to doctors and information regarding these effects.
Research is being conducted into various issues surrounding this cancer type, including causes, diagnosis and improving treatments for it. It is a particularly cruel cancer as it affects young children and a lot of work is being put into trying to find out more about it to improve survival rates.
Obviously, your child being diagnosed with cancer is unimaginable and truly horrific. Should you be concerned then there are people that can help:
The Neuroblastoma Society is run by parents and grandparents of neuroblastoma sufferers and they have a befriending scheme for affected families.
The Children’s Cancer and Leukaemia Group (CCLG) produces booklets for parents and siblings of childhood cancer sufferers which can be incredibly helpful. I have very dear friends that are part of this group and can personally vouch for their dedication and knowledge.
You can also contact the Cancer Research UK information nurses on 0808 800 4040 between 9am and 5pm Monday to Friday. They can offer advice on what support is available. This is a Freephone number.
Regular readers of this blog will know that childhood cancer is something my family has been affected by, and a subject very close to my heart. I send lots of love and good wishes to all sufferers and their families.