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.
Diagnosing Neuroblastoma:
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:
*Blood tests
*Chest X Ray
*CT, MRI or
Bone Scans
*A biopsy or
bone marrow biopsy
*Urine tests
*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.
Treating Neuroblastoma:
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.
xxx
