Non-Hodgkin lymphoma in children Freephone helpline 0808 808 5555

Transcription

Freephone helpline 0808 808 5555
information@lymphomas.org.uk
www.lymphomas.org.uk
Non-Hodgkin lymphoma
in children
Non-Hodgkin lymphoma (NHL) is a type of lymphoma, a cancer of the lymphatic
system. Lymphomas are the third commonest group of cancers in childhood (after
leukaemia and brain tumours). Every year over 80 children in Britain develop NHL.
Despite this many parents have never heard of non-Hodgkin lymphoma or NHL
before. Treatments for NHL are generally very successful and most children who have
lymphoma will be cured.
This leaflet aims to answer the main questions that parents of children diagnosed with
NHL might ask:
●
What is non-Hodgkin lymphoma? (see below)
●
What causes NHL? (page 2)
• What are the symptoms of NHL? (page 3)
●
How is NHL diagnosed? (page 4)
●
What further tests might my child need? (page 4)
●
What does the ‘stage’ mean? (page 5)
●
How is NHL treated? (page 5)
●
What side effects is my child likely to have? (page 7)
●
How can I best look after my child at this time? (page 10)
You may find it helpful to read our booklet High-grade non-Hodgkin lymphoma
or one of our type-specific information sheets too. Although dealing mainly with
NHL in adults, these provide more detailed information on some of the areas we
mention here. Please see our website or ring our helpline (0808 808 5555) for more
information.
What is non-Hodgkin lymphoma?
Lymphomas occur when a type of white blood cell called a lymphocyte starts to grow
in an abnormal, uncontrolled way. Lymphocytes are involved in fighting infections.
They move around the body in the blood, but also live in our lymph nodes (glands).
These lymph nodes are part of our lymphatic system (see figure 1 on next page),
which is part of the body’s defence against infection – the immune system. Lymph
nodes are found all over our bodies: some are easily felt if they are enlarged, like
those in your neck when you have a sore throat; others are deeper inside us and may
only be seen on scans.
Non-Hodgkin lymphoma in children
LYM0076/NHLinChild/2013v2
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In lymphoma, the abnormal lymphocytes Figure 1: The lymphatic system
grow in an uncontrolled way within the
lymph nodes. This makes the lymph
nodes swell and enlarge. These
abnormal lymphocytes (lymphoma cells)
Lymph nodes
may grow in other places too, such as
in neck
the spleen, liver, gut, skin and bone
Lymph
vessels
marrow. When these areas are affected
Lymph nodes
by lymphoma, they are called
in armpit
extranodal sites (meaning ‘areas
outside of the lymph nodes’).
Non-Hodgkin lymphoma (NHL)
refers to any lymphoma that is not a
Hodgkin lymphoma. In children about
6 in every 10 lymphomas are NHL;
the remainder are Hodgkin lymphoma.
Hodgkin lymphoma differs from NHL in
both its behaviour and the way it is
treated. This information sheet is
specifically about NHL in childhood;
we produce a separate information
sheet about Hodgkin lymphoma in
children.
Lymph
nodes in
groin
Thymus
Diaphragm
(muscle that
separates the
chest from
the abdomen)
Spleen
Liver
What causes NHL?
In most cases of childhood NHL there
is no known cause. There are though a few children who have problems with their
immune systems due to congenital immune deficiency or human immunodeficiency
virus/acquired immune deficiency syndrome (HIV/AIDS). Children with such illnesses
are more likely than other children to develop NHL. However, most children in the UK
who develop NHL were previously fit and well with no other medical problems.
It is important that you know:
●
Your child didn’t catch lymphoma.
●
Your child did not inherit lymphoma from you.
●
Your child can’t pass it on to anyone else.
Who is affected by NHL?
NHL is a relatively rare disease in children but some types are seen more commonly
in late teenage or early adult life. NHL is rare in children under the age of 2 years. Boys
are more often affected than girls.
NHL is much more common in adults with almost 12,000 people diagnosed each year
in the UK. Many of the types of NHL seen in adults, especially the low-grade types, are
almost never seen in children.
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Most of the lymphomas seen in children are what are known as high-grade (rapidly
growing) lymphomas. Although this may sound alarming, the high-grade lymphomas
are in fact more likely to be cured with treatment. The outcome for children with NHL
is much better than it is for adults.
What different types of NHL are seen in children?
The different types of NHL seen in children are divided by the type of lymphocyte
they develop from. Lymphocytes are either T cells or B cells, so the types of NHL are
known as either T-cell or B-cell lymphomas. The B-cell lymphomas seen in children
include Burkitt lymphoma (BL) and diffuse large B-cell lymphoma (DLBCL); the
T-cell lymphomas include lymphoblastic lymphoma (T-LBL) and anaplastic large cell
lymphoma (ALCL).
B-cell lymphomas (Burkitt and DLBCL) account for around half of the NHL seen in
children, T-LBL for up to a quarter, and ALCL for about 1 in every 5 cases.
If you would like further information on lymphoma classification please ring our
helpline (0808 808 5555).
What are the symptoms of NHL?
The symptoms children with NHL develop are quite variable, depending on the exact
type of lymphoma or where the disease develops. Symptoms such as unexplained
fever, weight loss and night sweats can occur in all types.
Burkitt lymphoma often involves lymph nodes in the abdomen or the bowel itself.
As a result it may present with massive abdominal swelling, pain, vomiting, or with a
build-up of fluid in the abdomen. It may also cause fluid to collect in the chest, which
can result in difficulty breathing.
The other common form of B-cell NHL, diffuse large B-cell lymphoma (DLBCL), can
develop in the chest, abdomen and sometimes the bones. This type of lymphoma, like
Burkitt lymphoma, is rapidly growing, sometimes called 'high grade'. Both types can
present with what is known as ‘bulky disease’, meaning the lymphoma has formed
large lumps.
T-cell lymphoblastic lymphoma (T-LBL) most commonly causes enlargement of
glands inside the chest around the heart, in an area known as the mediastinum.
Enlargement of these glands can put pressure on the trachea (windpipe) and result in
coughing or wheezing and shortness of breath. These symptoms may be mistaken for
asthma. Sometimes the glands will also put pressure on the blood vessels inside the
chest. This pressure can lead to swelling of the neck and redness of the face and can
make the neck veins stand out. Shortness of breath may also be due to fluid collecting
in the chest around one or both of the lungs.
Much more rarely B-cell lymphoblastic lymphoma (B-LBL) can occur. It causes
symptoms similar to those seen with T-LBL but lumps and nodules under or in the
skin/scalp occur quite commonly.
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Anaplastic large cell lymphoma (ALCL) can present anywhere in the body, either in
the lymph nodes or elsewhere in extranodal sites. The lymphoma often causes pain
and swelling, for example in the gut, bones and skin.
How is NHL diagnosed?
If any type of lymphoma is suspected, a number of tests will be needed. These aim
firstly to confirm the diagnosis and the precise type of lymphoma. Further tests then
assess what areas of the body are being affected.
To make the diagnosis, a small operation to remove some or all of the involved lymph
node will be needed. This is known as a biopsy. Your child will usually be given a
general anaesthetic to send them to sleep for about half an hour. Sometimes the
diagnosis may be made by drawing off a sample of the fluid from the chest, if there
is any. Often your local hospital will carry out the biopsy but will send the sample
to a specialist centre to be examined. The sample needs to be looked at under a
microscope by an expert lymphoma pathologist. Other specialist tests that look more
closely at the cells may also need to be done to make a definite diagnosis.
What further tests might my child need?
Your child will need other tests too. These tests will be to find out what parts of the
body are affected by the lymphoma. Knowing this allows the doctors to help plan the
best treatment for your child. This process is known as ‘staging’.
The tests may include the following:
●
blood tests
●
chest X-ray
●
ultrasound scan
●
computed tomography (CT) scan
●
magnetic resonance imaging (MRI) scan.
Your child will probably also need to have a bone marrow biopsy and a lumbar
puncture. Both of these are usually done with your child asleep (under general
anaesthetic).
A bone marrow biopsy involves taking some of the bone marrow from the hip bone
using a special needle to see if any lymphoma cells are present.
A lumbar puncture (LP) involves taking some of the cerebrospinal fluid (CSF) from
your child’s back using a special needle. The CSF is the clear liquid that cushions and
protects the brain and spinal cord. Lymphoma cells may be found in the CSF in some
types of lymphoma, so the fluid is examined to see if any lymphoma cells are present.
If you would like more information about these tests, please ring our helpline
(0808 808 5555).
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What does the ‘stage’ mean?
The ‘stage’ of the lymphoma tells the doctors where the lymphoma is in your child’s
body. It is based on the doctor’s examination and on the results of any tests that have
been done.
There are a number of different staging systems for lymphoma but the one used most
often for NHL in children and young people is the St Jude classification.
Stage I
One group of lymph nodes or a single extranodal site affected, but not
in the chest or abdomen
Stage II
One of the following:
Stage III
Stage IV
●
Two or more groups of lymph nodes or two extranodal sites on one
side of the diaphragm*
●
One extranodal site and the nearby lymph nodes affected on one side
of the diaphragm*
●
The lymphoma was in the abdomen but has been completely
removed by surgery
One of the following:
●
Lymph nodes or extranodal sites affected on both sides of the
diaphragm*
●
Lymphoma that started within the chest
●
Lymphoma that started alongside the spine or on the outer covering
of the brain
●
Lymphoma that is in the abdomen only but cannot be removed by
surgery
Lymphoma in the bone marrow or in the central nervous system (the
brain and spinal cord), whether or not there is lymphoma elsewhere
* a sheet of muscle that separates the chest from the abdomen (see figure 1 on page 2)
Lymphomas that are stage I or II are often referred to as localised NHL; stages III and
IV may be referred to as extensive or advanced-stage NHL. This may sound alarming
but there are good treatments available for all stages of NHL in children and most
children have stage III or IV disease.
How is NHL treated?
This information does not give advice on what sort of treatment your child should be
having. Different sorts of treatment are needed depending on which type of NHL your
child has and what stage it is. Your hospital specialist is the best person to talk to you
about your child’s treatment.
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The outlook for children and young people with NHL has improved considerably over
the last 30 years: today most are cured with chemotherapy. Radiotherapy (treatment
with X-rays) is rarely required.
Chemotherapy
Chemotherapy means treatment with drugs. Many of the drugs used to treat NHL are
known as cytotoxic drugs, meaning they kill cells (‘cyto’ means cell and ‘toxic’ means
poisonous).
A number of different drugs may be used to treat NHL. Several different sorts of drugs
are usually given together. Each combination of drugs is known as a drug regimen.
Using a variety of drugs and often giving them again a few weeks later increases the
chances of killing all the lymphoma cells. You will be given information about all the
drugs your child will receive and the likely side effects of each drug.
Some of these drugs have to be given intravenously (meaning into a vein). Most
children with NHL will have a central line put in to one of their main veins (see figure 2).
The ‘line’ stays in throughout their treatment, making it easier to have blood tests as
well as the chemotherapy. Lines used in children may be in the form of a Hickman® or
Broviac® line or a portacath. These lines are put into one of the big veins just above the
heart during a small operation before treatment starts. You will be given instructions
about how to look after the line at times when your child is not in hospital.
Figure 2: A central line
The line is
inserted
into the
chest here
Superior
vena cava
Catheter
tunnelled
under
skin
Tip of
central
catheter
Heart
The line
comes
out here
Clamp
Connection
for drips or
syringes
Some drugs are given orally (by mouth). Chemotherapy may also be given into the
CSF (the fluid surrounding the spinal column). Chemotherapy given this way is called
intrathecal chemotherapy. It is given during a lumbar puncture (LP), generally with
your child under a short general anaesthetic.
Treatment with chemotherapy can last from a few months to 2 years, depending on the
type of NHL your child has.
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Treatment of specific types of NHL
All types of NHL in children are treated with chemotherapy. The precise combination
of drugs used and how long they are given for varies with the type of lymphoma. The
treatment regimens used have been worked out over the last 20 years with the help
of clinical trials run in the UK and Europe for children with NHL. Your child’s specialist
will discuss with you the treatment they are recommending. They will provide you
with details of the drugs and the treatment plan. They will also discuss the option of
your child entering a clinical trial if one is currently available.
Burkitt lymphoma and diffuse large B-cell lymphoma (DLBCL)
If your child has one of these types of lymphoma their treatment will be several
courses of fairly intensive chemotherapy, including intrathecal chemotherapy. The
exact number of courses of treatment will depend on the stage of your child’s
lymphoma and how well it responds to treatment.
Lymphoblastic lymphoma (T-LBL)
If your child has this type of lymphoma, they are likely to receive a course of
treatment similar to that used for children with acute lymphoblastic leukaemia.
Doctors know from previous research that this is the best way to treat this type of
lymphoma. The course of treatment usually lasts for 2 years, with intensive blocks of
treatment given over the first 6–9 months, followed by a less intensive ‘maintenance
therapy’ for the remainder. Nearly all the therapy is given as an outpatient although
hospital admission is occasionally required. Most children will manage to return to
school during some of the intensive phases and during all the maintenance therapy.
Anaplastic large cell lymphoma (ALCL)
The current treatment for this lymphoma involves six courses of chemotherapy after a
short initial (pre-phase) course.
What side effects is my child likely to have?
Because chemotherapy drugs work by killing any cells that are dividing, they affect
normal cells as well as cancerous cells. It is this damage to normal cells that causes
many of the side effects. The normal cells in the body that are dividing include those
in the bone marrow, gut and hair follicles. Most side effects are only short term but
some can be longer lasting. Some side effects (known as late effects) may only
become apparent in the future.
Your specialist will give you information on all the drugs your child will be receiving.
There are a number of general side effects that can occur with most chemotherapy
drugs. Certain side effects may be specific to some drugs only and your child’s
specialist will give you advice about these. The following are some of the more
common side effects of chemotherapy. Do discuss with your hospital team if you have
concerns about side effects not mentioned here.
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Nausea and vomiting
Your child may feel sick for about 24–48 hours after receiving a course of intravenous
chemotherapy. They will be given anti-sickness medicine before and during their
treatment to help prevent this. If sickness continues to be a problem other antisickness medicines can be tried to help control vomiting. Some children feel sick
because of worry before their treatment but feel better as soon as the treatment
is over. Let the team looking after your child know if this is a problem, as other
medicines or help from a psychologist may be useful.
Hair loss
Many of the chemotherapy drugs used can lead to a temporary loss of hair. The
hair will grow back again, and in some cases it will be thicker, within a few months
of stopping intensive treatment. The hospital can arrange for a wig to be provided
(sometimes privately) until the hair grows back. Some children prefer to wear hats or
scarves. Loss of hair can be distressing and it is best to help your child decide what
they want to do about their hair loss.
Sore mouth and throat
Some of the chemotherapy drugs can make the lining of the mouth and gut very sore.
Your child may be given mouthwashes to use on a regular basis as it is important
to keep the mouth as clean as possible. Regular toothbrushing with a soft brush is
important too. The doctors may also prescribe preventative agents during your child’s
chemotherapy to protect the lining of their mouth. Painkillers can be given if a sore
mouth is causing particular problems.
Weight gain or loss
Because chemotherapy may damage the lining of the gut and make your child feel
sick, your child may not eat well and could lose weight. The hospital team including
the dietitian will give you advice on how best to feed your child. If your child’s weight
falls too much, they may be fed through a tube passed through the nose into the
stomach – known as a nasogastric (NG) tube – or fed intravenously through their
central line – known as total parenteral nutrition (TPN).
Keeping your child well nourished during treatment is important as it aids recovery.
Should you want to give your child any unusual foods or herbal remedies, do discuss
this with the team first. Some herbal remedies contain moulds or fungus that would
be dangerous for your child.
Some drugs such as steroids can cause a marked increase in appetite. These are not
the same as ‘anabolic’ steroids sometimes used by bodybuilders. The steroids used
in lymphoma treatment could make your child gain weight rapidly, develop a rounded,
moon-like face or weaken the muscles in their legs. These changes will disappear
gradually when treatment is completed.
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Effects on the blood and risk of infection
Chemotherapy particularly affects the cells of the bone marrow. The bone marrow
produces the body’s blood cells:
●
white blood cells, which fight infections
●
platelets, which help prevent bleeding
●
red blood cells, which carry oxygen.
Chemotherapy briefly stops the bone marrow working, which slows the growth of
normal blood cells so fewer blood cells are made. For this reason your child’s blood
count will usually be checked at each hospital visit. A blood count can be taken from
the central line or is sometimes done by pricking a finger to obtain a drop of blood.
Treatment may need to be delayed for a few days if the blood count hasn’t recovered
from the last chemotherapy and is still too low.
One important type of white blood cell is called a neutrophil. If your child has a
low number of neutrophils, the doctors and nurses will tell you that your child is
neutropenic. Being neutropenic means that your child is at risk of severe bacterial
infections.
Your hospital team will give you advice on some of the things you can do to limit the
risk of infections. They will also tell you what symptoms to look out for and how to get
in touch with them immediately if you are worried.
Measles and chickenpox can be particularly serious for children who have no
immunity to these infections and who are also having chemotherapy. The doctors
will usually test your child’s blood at the start of treatment to check whether they
are immune to these infections. If they are immune, there is little risk of re-infection.
If not, you should inform your hospital team immediately if your child comes into
contact with either of these infections. The team may need to arrange treatment to
lower the risks for your child. They will also want to avoid contact between your child
and other children who are at risk.
A lack of red blood cells is known as anaemia. This may make your child more tired
or short of breath. Occasionally it may be necessary for your child to receive a blood
transfusion.
Low numbers of platelets may make your child more likely to bruise or bleed, for
example they may get nosebleeds. If your child starts bleeding, they may be given a
platelet transfusion to help stop the bleeding.
For further information about neutropenia, anaemia or low platelets please ring
our helpline (0808 808 5555).
Fertility
Fertility, meaning the ability to have children in the future, can be reduced in some
people who have undergone treatment for lymphoma. The newer drug regimens
mean this is becoming less of a problem in children treated for lymphoma. Your child’s
doctors should discuss with you – and your child, depending on their age – the risks
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of infertility following the treatment that is being planned. Post-pubertal boys will be
offered sperm collection and storage where possible.
Many children who have had treatment for lymphoma have gone on to have children
of their own. When your child grows up, they will be able to have sex in just the
same way as other children who have not had lymphoma or lymphoma treatments.
As they become sexually active, it is therefore important that they take contraceptive
precautions in order to avoid unplanned pregnancy.
Risk of other cancers
There is evidence that some chemotherapy drugs (and radiotherapy, although this is
rarely used to treat children with NHL) can lead to a slightly higher risk of developing
another cancer later in life. Your child will need to be aware of this in the future. They
should know to always see a doctor promptly for any concerns about their health.
How can I best look after my child at this time?
The following section looks at some of the practical issues that often concern parents
looking after children with lymphoma. Your hospital team will be able to give you
more specific advice on these topics. Our helpline team are always happy to discuss
anything that is concerning you too (0808 808 5555).
Where will my child be treated?
In the UK most children with NHL are referred to a paediatric oncologist or
haematologist working in a specialist centre called a Principal Treatment Centre (PTC).
There are only about 20 specialist paediatric oncology centres in the UK and Ireland.
Often some of the treatment can be given at your local hospital, under the guidance
of the PTC. This sort of care is known as ‘shared care’.
Your specialist centre will give you all the information you require about your child’s
treatment. They will also introduce you to all the members of the ‘multidisciplinary’
team who can help you, your family and your child through their therapy and beyond.
Doctors working in paediatric oncology and haematology are members of the
Children’s Cancer and Leukaemia Group (CCLG). This organisation has been running
treatment trials for children with cancer since 1977. They have also developed
protocols (treatment plans) that are used by all the centres that treat NHL in children.
Children treated for NHL in the UK may be offered the chance to take part in a national
or international treatment study or clinical trial. Because childhood NHL is a relatively
rare disease, it is important that trials involve as many children as possible. Trials now
often involve children from the UK, Europe and the rest of the world. Over the last few
years such collaboration has led to improved outcomes for children with NHL.
The challenge for future trials is to find treatments that reduce the risk of side effects,
particularly late effects. But these new treatments must still be just as good at curing
lymphoma in children. Taking part in any trial is entirely voluntary, so if you prefer
you can opt for your child to receive the current ‘gold-standard’ therapy. This is the
treatment that doctors think is the best from previous clinical trials.
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Hospital and ward life
Once a diagnosis has been confirmed, your child’s doctors will probably wish to start
treatment as soon as possible. You will have the chance to talk things through with
the doctors and nurses before treatment starts. They will give you information about
your child’s particular treatment and what side effects you might expect them to
have. You should also be told about how things are arranged in the hospital and what
support is available. This may include help from a number of different staff such as
social workers, outreach nurses and play specialists, who may be able to visit you at
home.
Often, treatment for NHL will mean that your child needs to spend some time in
hospital. Most hospitals encourage one parent to stay with their child and often
accommodation can be arranged for you nearby. Relatives, including any brothers and
sisters, will also be welcome to visit. But any potential visitors with colds, flu or other
infectious illnesses should be asked not to visit your child.
What should I tell my child?
Telling your child that they have cancer can be a difficult thing to do. You may be
tempted to withhold information that seems too frightening. Experts working in this
field generally agree it is best to be honest with your child. Most also advise that
parents should use the words ‘cancer’ and ‘lymphoma’ openly. Your child will know
that something is wrong because of visits to the doctor and the various tests that
they have had.
What you tell your child will depend on your child’s age and understanding.
Young children between the ages of 2 and 7 will vary in how much they understand
of illness, particularly their own. It is important that they understand that the
lymphoma has not been caused by anything they have done wrong and they are
not being punished for anything. They need simple, clear explanations about their
treatment. There are publications designed for this age group that can be used to
explain how treatment works. Play specialists on the wards are trained to help parents
explain things to their children (including the affected child’s siblings), often through
pictures, paintings and play.
Older children aged 7 to 12, are less likely to think their illness has been caused
by something they did wrong. At this age children can understand that they need
treatment to get better and that they need to cooperate with the doctors and nurses.
You can explain that the treatment will help the ‘good’ cells to do their job properly
and get rid of the ‘bad’ or ‘out-of-control’ cells. Sometimes it is difficult for them to
accept this, especially if they weren’t too unwell to start with.
We produce a booklet that is designed to be read to, or by, children with
lymphoma; please ring our helpline (0808 808 5555) if you would like a copy.
Teenagers are able to understand things that are outside their personal experience
and can cope with more complicated explanations. Teenagers may sometimes appear
to be coping well and get very involved in understanding their treatment. At other
times they may become withdrawn, and need a lot of family support. Sometimes they
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seek support from their peers rather than their parents and often require their own
space. Your child may also wish to – and can – discuss the progress of their treatment
with the doctors on their own. They might feel embarrassed and self-conscious about
their treatment and may lose self-esteem. They may worry about dealing with both
the physical and emotional effects of their treatment.
Parents need to be sensitive to the varying feelings and moods of their teenagers.
It is hard enough being a teenager without having to cope with having treatment for
lymphoma. Some young people will be more outgoing and confident than others, but
they will all have good days and bad days.
Finally, if you do not know the answer to your child’s question you should say so, and
ask your child’s doctor or nurse to help. Your child will lose confidence in you if you
avoid the subject or give incorrect information. Be honest, if you don’t know what to
say or how to say it, ask the team for advice.
We produce a booklet that is designed to be read by young people with
lymphoma; please ring our helpline (0808 808 5555) if you would like a copy.
What happens when we go home?
If your child is young, you may find that they behave more childishly when they are
ill. Older children may become aggressive or jealous of their brothers and sisters.
Whatever your child’s age, maintaining a routine that is as familiar as possible will help
your child to adjust and cope.
What happens when my child goes back to school?
It is important for your child to continue normal schooling and their social life as much
as possible during treatment. Lessons are usually available on the hospital wards
for those who are well enough to participate. The hospital teacher, social worker or
outreach nurse can arrange a visit to your child’s school. If necessary home tuition can
be arranged.
Before your child returns to school the head and class teacher should be made aware
of your child’s illness and any side effects of their treatment. Outreach nurses from
your unit will help liaise with schools on your behalf. Warn the teacher of the risk
of infection to your child and ask that they inform you if there is serious illness in
the school. The risks from measles and chickenpox can continue for 6 months after
stopping treatment.
It will be helpful if the teacher can prepare the class for your child’s return too. The
teacher should explain that children get better after lymphoma and it isn’t like cancer
sometimes is in older people. The class should be aware of any hair loss or weight
change that may have occurred. It should be explained that these changes are just for
now and will gradually go away.
Young children can be very insensitive and thoughtless to anyone who is different
and find it difficult to cope with a change in the appearance of a friend. It may help to
explain to your child that not everyone understands as much about cancer as they do.
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What happens when treatment is finished?
Once your child has finished treatment, the doctors will usually arrange some repeat
scans and other tests to make sure all is well. After that, your child will be seen regularly
in the clinic for several years. In the first instance, visits are usually every couple of
months and scans or X-rays may be required at the same time. Initially the doctors will
be checking mainly to make sure that the lymphoma has not come back. Less frequent
reviews are needed as time goes by and scans or X-rays will stop. After a few years the
doctors will be checking mainly that your child is growing and developing well. Usually, the
visits end up being just once a year until your child is safely through puberty.
Taking care of yourself
When you first learn that your child has NHL your reaction will probably be a combination
of shock, fear, numbness and disbelief. Some parents find it very difficult to take it all
in at the first visit. Sometimes it is simply a relief to find out at last what is wrong with
their child’s health. You might feel very angry and wonder why this has happened to
your family – these feelings are very common. It is very important you know that there
is nothing you could have done to prevent your child from developing NHL.
The treatments offered throughout the UK are pretty much identical as most units offer
the same treatment. However, if you are concerned or have any worries about the
treatment, you can ask for a second opinion. Most specialists will be supportive of this.
If you would like to seek a second opinion you can discuss this with your child’s hospital
specialist or GP.
Having a seriously ill child can put a great strain on a relationship. It will help if you and
your partner can talk together about your child’s illness so that misunderstandings do
not arise.
It is important that you continue to make time for yourself, look after yourself and spend
time with your partner doing some of the things that you normally enjoy. This will help
to create a sense of balance in your life and will enable you to recharge your batteries.
It will help you to find the strength to continue to cope with both your child and your
family during this very demanding period in your life. Your child needs your help and
support and you can only give them this if you are well yourself.
Many children’s cancer centres have parents’ groups where you can meet other parents
of children with cancer and talk about your fears and anxieties. Our helpline staff will
always be happy to talk about anything that is worrying you. They might also be able to
put you in touch with someone who has had similar experiences to your own. You might
like to see what people are saying on our website forums too.
A final note
The treatment of NHL has changed dramatically over the years: it is now a condition that
can usually be cured. Children with NHL can grow up normally, continue their schooling,
go on to higher education if they want, have normal jobs and relationships, and enjoy a
normal life. It’s just these next few months that may be difficult … but remember, there
are lots of people around who can help.
13/16
Acknowledgement
We would like to thank all of our expert reviewers and the many people affected by
lymphoma who help us in the preparation of our information. In particular we are grateful to
Dr Georgina Hall for her assistance in the preparation of the latest version of this article.
Dr Hall is consultant paediatric haematologist at John Radcliffe Hospital, Oxford.
Useful sources of further information and support
CLIC Sargent
Provides support and information to children with cancer and their families, including
accommodation near hospitals, grants and benefit advice, and free breaks for families in need.
HoratioHouse
77–85 Fulham Palace Road
London W6 8JA
0300 330 0803
 via website
www.clicsargent.org.uk
Teenage Cancer Trust (TCT)
Provides specialist units to treat teenagers and young adults with cancer, offers a support
network to teenagers affected by cancer, funds specialist nursing posts and research into
teenage cancer.
3rd Floor
93 Newman Street
London W1T 3EZ
020 7612 0370
 via website
www.teenagecancertrust.org
Children’s Cancer and Leukaemia Group (CCLG)
CCLG, the national association of healthcare professionals involved in the treatment of
children with cancer, provides information for patients and families.
University of Leicester
3rd floor, Hearts of Oak House
9 Princess Road West
Leicester LE1 6TH
 0116 249 4460
info@cclg.org.uk or via website
www.cclg.org.uk
Childhood Cancer Parents Alliance (CCPA)
Formerly known as NACCPO; this is a group of parent-run organisations that work together
to support children and young adults with cancer.
SDVS, 131–141 North Walls
Stafford ST16 3AD
01785 220637 or 07982 426142
ro@ccpa.org.uk
www.childcancerparents.org
14/16
Make-A-Wish Foundation UK
Grants wishes to children and young people (aged 3 to 17) who are fighting lifethreatening illnesses.
329–331 London Road
Camberley
Surrey GU15 3HQ
01276 405060
info@make-a-wish.org.uk
www.make-a-wish.org.uk
Starlight Children’s Foundation
Aims to brighten the lives of seriously ill children (aged 4 to 18) by granting wishes
and providing in-hospital entertainment for children to take their minds off their illness.
Starlight Children’s Foundation
Macmillan House
Paddington Station
London W2 1HD
 020 7262 2881
via website
www.starlight.org.uk
Youth Cancer Trust
Provides free activity-based holidays for young people (aged 14 to 30) who have, or
have had, cancer.
Tracy Ann House
5 Studland Road
Alum Chine
Bournemouth BH4 8HZ
01202 763591
admin@yct.org.uk
www.youthcancertrust.org
Selected references
The full list of references is available on request. Please contact us via email
(publications@lymphomas.org.uk) or telephone 01296 619409 if you would like a copy.
Cancer Research UK. Non-Hodgkin lymphoma – UK incidence statistics 2009.
Available at: info.cancerresearchuk.org/cancerstats/types/nhl/ (accessed Nov 2012).
Miles RR, et al. Risk factors and treatment of childhood and adolescent Burkitt
lymphoma/leukaemia. British Journal of Haematology, 2012. 156: 730–743.
Okebe JU, et al. Therapeutic interventions for Burkitt lymphoma in children (Review).
Cochrane Database of Systematic Reviews, 2011. CD005198.
Reiter A, Klapper W. Recent advances in the understanding and management of
diffuse large B-cell lymphoma in children. British Journal of Haematology, 2008. 142:
329–347.
15/16
How we can help you
We provide:
●
a free helpline providing information and emotional support  0808 808 5555 (9am–6pm
Mondays–Thursdays; 9am–5pm Fridays) or  information@lymphomas.org.uk
●
free information sheets and booklets about lymphoma
●
a website with forums – www.lymphomas.org.uk
●
●
the opportunity to be put in touch with others affected by lymphoma through our
buddy scheme
a nationwide network of lymphoma support groups.
How you can help us
We continually strive to improve our information resources for people affected by lymphoma
and we would be interested in any feedback you might have on this article. Please visit
www.lymphomas.org.uk/feedback or email publications@lymphomas.org.uk
if you have any comments. Alternatively please phone our helpline on 0808 808 5555.
We make every effort to ensure that the information we provide is accurate but it
should not be relied upon to reflect the current state of medical research, which is
constantly changing. If you are concerned about your health, you should consult
your doctor.
The Lymphoma Association cannot accept liability for any loss or damage resulting
from any inaccuracy in this information or third party information such as
information on websites which we link to. Please see
our website (www.lymphomas.org.uk) for more
information about how we produce our information.
© Lymphoma Association
PO Box 386, Aylesbury, Bucks, HP20 2GA
Registered charity no. 1068395
Updated: March 2013
Next planned review: 2015
16/16

Non-Hodgkin lymphoma in children Freephone helpline 0808 808 5555

Transcription

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