Hodgkin lymphoma in children Freephone helpline 0808 808 5555 www.lymphomas.org.uk

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Freephone helpline 0808 808 5555
[email protected]
www.lymphomas.org.uk
Hodgkin lymphoma in children
Hodgkin lymphoma 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 Hodgkin lymphoma;
despite this, many parents have never heard of Hodgkin lymphoma before. Treatments
for Hodgkin lymphoma are generally very successful and most children who have the
disease will be cured.
This leaflet aims to answer the main questions that parents of children diagnosed with
Hodgkin lymphoma might ask:
●
What is Hodgkin lymphoma? (see below)
●
What causes Hodgkin lymphoma? (page 2)
●
What are the symptoms of Hodgkin lymphoma? (page 3)
●
How is Hodgkin lymphoma diagnosed? (page 3)
●
What further tests might my child need? (page 3)
●
What does the ‘stage’ mean? (page 4)
●
How is Hodgkin lymphoma treated? (page 4)
●
What are the possible side effects of treatment? (page 6)
●
How can I best look after my child at this time? (page 9)
You may find it helpful to read our booklet Hodgkin lymphoma too. Although dealing
mainly with Hodgkin lymphoma in adults, this provides more detailed information on
some of the areas we mention here.
What is Hodgkin lymphoma?
Hodgkin lymphoma occurs when a type of white blood cell starts to grow in an
abnormal, uncontrolled way. These cells usually fight infections and often collect in
our lymph nodes (glands). These lymph nodes are part of our lymphatic system
(see figure 1 on next page), which forms part of our immune system.
Lymph nodes are found in many areas of our bodies: some are easily felt if they are
enlarged; others are deeper inside us and may only be seen on scans.
In lymphoma, the abnormal cells grow in an uncontrolled way within the lymph nodes.
This makes the lymph nodes swell and enlarge. The abnormal lymphoma cells may
collect in other places too, such as the spleen, liver, gut, skin and bone marrow. When
these areas are involved by lymphoma, they are called extranodal sites, meaning
‘areas outside of the lymph nodes’.
LYM0075/HLinChild/2013v2
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Hodgkin lymphoma is named after
Dr Thomas Hodgkin who first
described the condition in the 19th
century. Other types of lymphoma
are called non-Hodgkin lymphoma.
These can behave differently and
need different treatment to Hodgkin
lymphoma. We produce a separate
information sheet about
non-Hodgkin lymphoma in children.
There are two main types of
Hodgkin lymphoma seen in children
and young people. One is called
classical Hodgkin lymphoma and
the other is lymphocyte-predominant
Hodgkin lymphoma. The treatment
for these two types is different with
the classical type usually needing more
intensive treatment. We produce a
separate information sheet about
lymphocyte-predominant Hodgkin
lymphoma although it covers the
disease in adults too.
Figure 1: The lymphatic system
Lymph nodes
in neck
Lymph
vessels
Lymph nodes
in armpit
Lymph
nodes in
groin
Thymus
Diaphragm
(muscle that
separates the
chest from
the abdomen)
Spleen
Liver
If you would like a copy of any
of our other information
booklets or leaflets please
ring our helpline (0808 808 5555).
What causes Hodgkin lymphoma?
The cause of Hodgkin lymphoma remains unclear. It is important that you know:
●
Your child did not catch lymphoma.
●
Your child did not inherit lymphoma from you.
●
Your child cannot pass it on to anyone else.
Who is affected by Hodgkin lymphoma?
Hodgkin lymphoma can affect both children and adults. It is much more common in
adults, with over 1,800 people diagnosed in the UK in 2009.
Hodgkin lymphoma is rare in children under 5 years of age with only about four children
in this age group diagnosed in the UK each year. It is most commonly diagnosed in
children over the age of 10. It is slightly more common in boys than in girls.
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What are the symptoms of Hodgkin lymphoma?
Often the first thing noticed in a child with Hodgkin lymphoma is one or more painless
lumps that do not go away after several weeks. The lumps are enlarged lymph nodes.
These may often be seen with infections too, but in lymphoma they do not shrink
back down.
The most common lymph nodes to be affected are usually in the neck, most often on
one side only. Sometimes enlarged lymph nodes can be felt in the armpits or groin.
If lymph nodes in the chest are affected, this may cause a troublesome cough or
shortness of breath. Sometimes a child with Hodgkin lymphoma may have fevers,
sweating and weight loss. They may develop anaemia, be really tired all the time or
have problems with infections that they can’t shake off.
How is Hodgkin lymphoma diagnosed?
For the doctors to make the diagnosis, your child will need a small operation to
remove all or part of a lymph node. 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. The
biopsy may be carried out at your local hospital but if cancer is already suspected,
your child may be referred to a specialist centre. This is because the sample needs to
be looked at under a microscope by an expert lymphoma pathologist. Other specialist
tests may also be needed on the biopsy to make a definite diagnosis.
Sometimes lymph nodes are easy to feel and easy to biopsy, but other times they can
be seen only on an X-ray or scan and cannot be felt. If this is the case, taking a biopsy
will need a bigger operation. Your child’s specialist will discuss this with you.
What further tests might my child need?
The first question parents ask is ‘what is this lump?’ The second question is ‘where
else is it?’ After the biopsy, your child will need extra tests to find out what parts of
the body are affected by the lymphoma. Knowing this information allows the doctors
to plan the best treatment for your child.
The tests may include the following:
●
blood tests
●
chest X-ray
●
computed tomography (CT) scan of the chest and/or abdomen
●
positron-emission tomography (PET) scan.
Your child may also need to have a bone marrow biopsy. This involves taking a
sample of the bone marrow using a special needle from just above the hip bone
to see if any lymphoma cells are present. It is usually done with your child under a
general anaesthetic.
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 your child’s lymphoma shows which parts of the body have been
affected. The doctors work this out from the results of the scans and other tests.
Stage I
One group of lymph nodes is affected
Stage II
Two or more groups of lymph nodes are affected on one side of the
diaphragm*
Stage III
Lymph nodes are affected on both sides of the diaphragm*
Stage IV
Lymphoma is found in organs outside of the lymph nodes and spleen
* a sheet of muscle that separates the chest from the abdomen (see figure 1 on page 2)
In addition to the numbers, you may also hear ‘A’ or ‘B’ added to the stage. ‘B’ would
mean that your child has B symptoms, meaning marked weight loss, severe night
sweats and/or unexplained fevers; ‘A’ would mean there are none of these symptoms
present.
Knowing the stage of the lymphoma helps the doctors to plan the best treatment for
your child. Do not be alarmed if your child has one of the higher stages; with the right
treatment, their lymphoma is still very likely to be cured.
How is Hodgkin lymphoma treated?
This information does not give advice on what sort of treatment your child should
be having. Your hospital specialist is the best person to talk to you about the exact
choice of treatment. If you would like further general information about lymphoma
treatments and their side effects, please ring our helpline (0808 808 5555).
The main way of treating Hodgkin lymphoma is to use chemotherapy – drugs known
to kill the cancerous cells. These drugs are given in blocks (often known as cycles)
and it is usual to give two cycles and then repeat the PET scan. If the scan shows
evidence of lymphoma at this time, further treatment is needed both with more
chemotherapy and with radiotherapy. If the scan shows no evidence of lymphoma,
the treatment may stop at this point for low-stage disease. For higher stage disease,
more chemotherapy is still needed but without radiotherapy.
Surgery is very rarely used to treat Hodgkin lymphoma, except in some children with
the lymphocyte-predominant type.
Treatment will depend on the stage of the Hodgkin lymphoma and other factors
including your child’s general health. You may find that other children with lymphoma
are having different treatments to your child. This is because treatment is planned
individually for each child.
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Chemotherapy
Chemotherapy means treatment with drugs. The drugs used to treat Hodgkin
lymphoma are called cytotoxic drugs, meaning they kill cells (‘cyto’ means cell and
‘toxic’ means poisonous).
A number of different drugs are used to treat Hodgkin lymphoma. Usually several
drugs that kill cells in slightly different ways are combined together in what is known
as a regimen. These regimens are often known by the initials of the drugs being
used; for instance, OEPA, COPDAC and COPP. You will be given information about the
specific drugs that your child will have and about what side effects to expect.
Some of these drugs have to be given intravenously (through a drip into a vein). Your
child may have a central line put in to make this process easier. A central line is a soft
tube that goes underneath the skin and into one of the larger veins just above the
heart (see figure 2). It needs a small operation and a general anaesthetic to put it in.
Once in place, it should be painless and will hopefully remain throughout your child’s
treatment. A central line can also be used to take blood samples for blood tests. It will
be removed at the end of treatment, which again involves a small operation.
Figure 2: A central line
The line is
inserted
into the
chest here
Superior
vena cava
Tip of
central
catheter
Catheter
tunnelled
under
skin
Heart
The line
comes
out here
Clamp
Connection
for drips or
syringes
Chemotherapy is given over varying periods of time depending on the exact regimen.
At present the regimens being commonly used can take anything from 4 months to
8 months or longer.
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Radiotherapy
Radiotherapy uses high-energy X-rays to kill the abnormal cells. The type of
radiotherapy used in lymphoma treatment will not make your child ‘radioactive’. It will
not be harmful to other members of the family.
The treatments for Hodgkin lymphoma in children use relatively low doses of
radiotherapy. This is to avoid damage to your child’s growing bones and muscles.
The radiotherapy will be given over several days or weeks but each treatment only
lasts a few minutes. Your child will need to lie very still for these few minutes.
Because of this, many hospitals make special moulds to hold your child’s body in
position. Radiotherapy is painless but some children may feel sick during treatment.
The skin is affected by the X-rays in the same way as it is by the sun. You will need
to be very gentle with your child’s skin in the treatment area – do not use perfumed
soaps, creams, powders or deodorants in this area. The area should not be exposed to
sunlight or extreme cold. The hospital staff will give you instructions about caring for
your child’s skin too.
Trials
You may be asked about entering your child into a clinical trial. Trials are a way for
doctors to work together to find out more about a particular illness and the best way
of treating it. In recent years, many trials in children have focused on giving the right
amount of treatment depending on how the lymphoma behaves. The aim of such trials
is to limit side effects, especially in the long term, while still giving every chance of
curing the lymphoma.
At the time of writing there are two trials being run for children with Hodgkin
lymphoma in the UK. Your specialist will be able to give you more information if either
of these is suitable for your child. All trials are voluntary. If you do not wish your child
to take part, the doctors will continue to treat them with the best current treatment.
What are the possible side effects of treatment?
Treatments for Hodgkin lymphoma will also damage healthy normal cells within your
child’s body. This means your child may develop some of the following side effects
from their treatment. Most side effects are short term only, but some of them can be
longer lasting.
Nausea and vomiting
Your child may feel sick for about 24 hours after receiving chemotherapy. They will be
given anti-sickness medicine before their treatment to help prevent this. If sickness
continues to be a problem, other anti-sickness 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 there are medicines that will often help.
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Hair loss
The chemotherapy used to treat Hodgkin lymphoma can lead to temporary hair loss.
The hair always grows again quite normally, and in some cases will be thicker, within
a few months of stopping treatment. Loss of hair can be distressing for children.
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. It is better to allow your
child to decide whether they wish to disguise their hair loss and how.
Effects on the blood
Chemotherapy affects the cells of the bone marrow too. The bone marrow produces
the body’s blood cells:
●
white cells, which fight infection
●
platelets, which help the blood to clot
●
red cells, which carry oxygen.
Chemotherapy briefly stops the bone marrow working, so fewer blood cells are made.
For this reason your child’s blood count will be checked at each hospital visit. This
can be done either by pricking a finger to obtain blood or by taking blood through the
central line. Occasionally, chemotherapy may need to be delayed for a few days if the
blood count shows that the cell numbers are too low.
A low number of white cells (often called neutropenia) means that your child will
have more risk of catching infections.
Often infections come from the bacteria (germs) that live on your child’s own skin or
in their bowel. It is therefore not possible to avoid all infections. Your hospital team will
give you advice on some of the things you can do to limit the risk of infections.
Measles and chickenpox can be particularly serious for children who have no
immunity to these infections and who are also having chemotherapy. If your child has
already had these infections or has had a measles vaccination, there is little risk of
re-infection. If not, you should let the hospital team know immediately if your child
has contact with either of these infections. In the case of chickenpox, treatments can
be given to help limit the effect of the infection. You should let the hospital staff know
before going to the hospital if your child may be incubating measles or chickenpox.
The staff can then make sure that your child does not come into contact with other
children.
Your child is likely to become unwell at some stage during treatment. They will
probably have a high temperature. The hospital staff will give you advice and
guidance on what to do when this happens. You should telephone the hospital
immediately for advice on what to do if you are at all unsure.
You should not give your child any other drugs or medicines while they are on
treatment without first checking with the hospital specialist. Your child should not have
any vaccinations or immunisations during treatment or for 1 year afterwards, unless
this has been agreed by one of your child’s medical team.
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A lack of red cells is known as anaemia. Occasionally it may be necessary for your
child to receive a blood transfusion.
Shortage of platelets may make your child more likely to bruise or to bleed; for
example they might get nosebleeds.
For further information about neutropenia, anaemia or low platelets please ring
our helpline (0808 808 5555).
Sore mouth and throat
Some chemotherapy drugs can make the lining of the mouth sore and cause mouth
ulcers. Your child will be given mouthwashes to use on a regular basis as the mouth
needs to be kept as clean as possible. The hospital staff will be able to advise you
what painkillers to give if a sore mouth becomes a problem for your child. Some
children also find sucking on an ice lolly helpful.
Weight gain or loss
Because chemotherapy may damage the lining of the gut and make your child feel
sick, your child may not eat and could lose a lot of weight. If your child’s weight falls
too much, they may be fed through a tube passed through the nose into the stomach
or fed intravenously through a central line.
Some drugs, such as steroids, may make your child gain weight rapidly instead
and develop a rounded, moon-like face. This will disappear when the treatment is
completed and the weight will be gradually lost. Any change in appearance can be
particularly distressing for teenagers who need to be reassured that the weight gain
is only temporary. Steroids may also worsen acne and may cause temporary mood
swings.
Eating during treatment
It can be difficult to maintain a normal diet at this time. Ideally your child should have
as balanced a diet as possible. This should include lots of carefully washed fresh
fruit and vegetables. It is also important that they drink plenty of fluids. If your child’s
appetite is poor, frequent small meals may help. Children often prefer soft foods such
as eggs, soup, milk puddings, yoghurt, fish and chicken, or ice cream.
If you child’s white cells are low, some hospitals will recommend avoiding certain
foods (a neutropenic diet) during this time. Hospital dietitians can provide advice about
eating during treatment and offer ideas for coping if your child has eating problems.
If you would like further information on nutrition or neutropenic diets 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 had treatment for lymphoma. The newer drug treatments now
being used mean this is much less likely to be a problem for your child. It is possible
however that you may read about major fertility problems in people who have been
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treated with older drug regimens. Your child’s doctors should discuss with you – and
your child, depending on his or her age – the risks of reduced fertility following the
treatment that is being planned.
Many children who have had treatment for lymphoma have later had 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 radiotherapy and some chemotherapy drugs can lead to a
slightly higher risk of developing another cancer later in Iife. This increased risk is
small and doctors believe it is far more important to treat the lymphoma as effectively
as possible.
Effects on growth of bones and soft tissue
If your child is given a course of radiotherapy to the neck, chest or abdomen, the
growth of the bones and soft tissues within the area will be affected. The effects do
not become apparent until several years after treatment. They will be more noticeable
in those children who are younger at the time of radiotherapy. If the neck is treated,
your child will eventually have a somewhat thin neck. This can present a problem for
boys with the size of shirt collars. If the chest or abdomen is treated, there will be
some shortening of the spine in the treated region.
Effects on the thyroid gland
Children who receive radiotherapy to the neck also need to have regular blood tests
to check their thyroid gland is still working well. This gland is found in the middle and
front of the neck, so it cannot be avoided during radiotherapy to the neck. In a few
children the thyroid gland becomes underactive (stops making enough of the hormone
thyroxine) after radiotherapy to the neck. Tablets to replace the thyroxine can correct
this completely.
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?
As cancers in children are very rare, there are only about 20 hospitals in the UK that
regularly treat children with cancer. These are called Principal Treatment Centres
(PTCs). Your child will be referred to a paediatric oncologist or haematologist at one
of the PTCs who will oversee your child’s treatment. 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’.
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The doctors who work in the PTCs have regular meetings to agree the ways to treat
Hodgkin lymphoma. Therefore, they all use the same treatment plans or ‘protocols’,
which will be based on the most recent evidence from trials. The current treatment
protocols are used in many countries across Europe. They bring together the joint
knowledge and experience of many medical staff.
Hospital and ward life
After your child has been diagnosed, you may want some time to go away and think.
You and your child 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 exact
treatment and what side effects you can expect your child to have. You should also be
told about how things are arranged in the hospital and what support is available.
Your child may have some of their treatment as an outpatient, which means they
won’t need to stay in hospital. If it is difficult to arrange hospital visits each day, talk to
the hospital social worker. They may be able to advise you on help with travel costs or
arrangements for your other children. The hospital social worker will be experienced in
dealing with parents’ anxieties.
If your child needs to spend some time in hospital, most hospitals encourage one
parent to stay. Often accommodation can be arranged. All children will want their
parents to spend as much time as possible with them. If you have to leave, it is
important to reassure your child that you love them and will return as soon as you can.
Children who have recently been diagnosed with cancer are exposed to many new
experiences. They may see other children who are feeling ill or are bald or children
with other types of cancer who have had operations. Try to explain to your child that
there are lots of different cancers and that his or her treatment might be different to
that of other children.
It also helps to include your child’s brothers and sisters in your visits occasionally. This
will help them understand what is happening so they do not develop distorted ideas
and unnecessary fears about hospital treatment. They will then be more helpful and
supportive when their brother or sister returns home and less jealous if your child with
lymphoma receives special attention.
Grandparents and friends can also be very helpful in sharing the burden of hospital
trips. If your child feels well enough, visits from school friends, provided that they
have been told in advance what to expect, may be helpful too.
Any relatives or friends with colds, flu or other infections though should be asked not
to visit your child.
What should I tell my child?
Telling your child that they have lymphoma, a form of cancer, is 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
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tests that have been done. When you use the word ‘cancer’, point out that the word
covers many different illnesses and that ‘older people’s cancer’ is not necessarily the
same as ‘younger people’s cancer’.
As soon as you know the diagnosis, it is best to let your child know too. You may find
it helpful to talk to your child’s doctors before doing this. It will help your child if you
have found out a bit about their illness and the treatment that has been recommended
before talking to them. It may also be a good idea to practise what you are going to say.
You know your child best and you may want to tell them yourself. Alternatively you may
want the doctor to explain things. It might be helpful to have someone else there who
can support you and your child. Choose a time that is quiet and when you or the other
person will be around for some time afterwards. In this way your child can come and
ask any further questions as they arise.
Whenever you are with your child, remember they will pick up on how you say things
and your expression too. Even if you feel anxious, try to reassure your child that they
are going to get better. Hard as it may be, remember a smile may be better than any
number of words.
What you tell your child will depend on his or her age.
Young children
Children between the ages of 2 and 7 generally understand something about their
illness, but it is very much from their own point of view. It is very important that they
understand that the cancer is not caused by anything they have done 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 help to explain
how treatment works.
Older children
Children aged 7 to 12 are less likely to think that their illness is caused by something
they did wrong. At this age children understand that they will get better in response to
treatment and by cooperating with the doctors. 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.
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
Teenagers are able to understand things that are outside their personal experience and
can cope with more complex explanations. Teenagers may sometimes appear to be
coping well and get very involved in understanding their treatment. At other times they
may need lots of family support or need to be with their friends and independent of
mum and dad instead.
They may also wish to discuss the progress of their treatment with the doctors on their
own. They might feel very embarrassed and self-conscious about having treatment,
especially as appearance can matter so much at this age.
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Parents need to be sensitive to the varying feelings and moods of their teenager.
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. Try to discuss their illness in a calm and
confident manner, and express your confidence in the medical staff treating them.
We produce a booklet designed specifically 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 they behave more childishly when they are ill.
Older children may become more 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 return to normal.
What happens when my child goes back to school?
It is important for your child to continue normal schooling as much as possible during
treatment. Lessons usually continue on the hospital wards for those who are well
enough to join in. The staff at the hospital school will be able to help arrange support for
normal school studies. The hospital social worker or oncology community nurse may be
able to arrange a visit to your child’s school to ensure the staff understand the problems.
When your child returns to school, inform the head and class teacher about your
child’s illness and any side effects of their treatment. This will help them to support
you and your child. Warn the teacher of the risk of infection to your child; ask that
they inform you if there is serious illness in the school. The risks from measles and
chickenpox can continue for up to 12 months after stopping treatment.
It will help 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. The teacher should explain that these side effects will
gradually go away.
Young children can be very insensitive 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.
What happens when treatment is finished?
Once your child has finished treatment, the doctors will usually arrange some repeat
scans and other tests. These are to make sure that your child is in remission, meaning
there is no visible evidence of lymphoma. After that, your child will be seen regularly
in the clinic for many years.
At first, visits are usually every couple of months and scans or X-rays may be required
at the same time. The doctors will be checking mainly to make sure that the disease
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has not come back (relapsed). Less frequent reviews are needed as time goes by
because relapse becomes less likely, and scans or X-rays will stop after a time. 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 the late teenage years.
Taking care of yourself
When you first learn that your child has Hodgkin lymphoma, your reaction will probably
be a mixture of shock, fear, numbness and disbelief. Some parents find it difficult to
take it in all at once. 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. There is no evidence to suggest that
you could have done anything to prevent your child developing Hodgkin lymphoma.
It may help to be confident that your child is having the best treatment. The treatments
offered are similar throughout the UK; however, if you are concerned, you may wish to
seek a second opinion and 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 talk together about your child’s illness so that misunderstandings
do not arise.
It is important that you continue to make time for yourself and spend time with your
partner doing some of the things 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.
Many children’s cancer centres have parents’ groups where you can meet other parents
of children with cancer and talk about your fears and concerns. 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 Hodgkin lymphoma has changed dramatically over the years. It is
now a condition that can usually be cured. Children with Hodgkin lymphoma can grow
up normally, go to college and university if they wish, have normal jobs, have normal
relationships and have a normal life. It’s just these next few months that may be very
difficult … but remember, there are lots of people around who can help.
Acknowledgement
We are grateful to Dr Martin Hewitt for his assistance in the preparation of this article.
Dr Hewitt is consultant paediatric oncologist at Nottingham Children’s Hospital,
Nottingham University Hospitals NHS Trust and was involved in developing treatment
programmes for Hodgkin lymphoma in the UK.
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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.
Horatio House
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
[email protected] or via website
www.cclg.org.uk
Childhood Cancer Parents Alliance
SDVS 131–141 North Walls
Stafford ST16 3AD
01785 220637 or 07982 426142
[email protected]
www.childcancerparents.org
Make-A-Wish Foundation UK
Grants wishes to children and young people (aged 3 to 17) who are fighting
life-threatening illnesses.
329–331 London Road
Camberley
Surrey GU15 3HQ
01276 405060
www.make-a-wish.org.uk
14/16
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
www.youthcancertrust.org
Selected references
The full list of references is available on request. Please contact us via email
([email protected]) or telephone 01296 619409 if you would like a copy.
Cancer Research UK. Hodgkin lymphoma – UK incidence statistics 2009. Available at:
info.cancerresearchuk.org/cancerstats/types/hodgkinslymphoma/ (accessed July 2012).
Shankar A, et al. Clinical outcome in children & adolescents with Hodgkin’s lymphoma
after treatment with chemotherapy alone – the results of the United Kingdom HD3
national cohort trial. European Journal of Cancer, 2012. 48: 108–113.
Shankar A. Daw S. Nodular lymphocyte predominant Hodgkin lymphoma in children
and adolescents – a comprehensive review of biology, clinical course and treatment
options. British Journal of Haematology, 2012. 159: 288–298.
Stoneham S, et al. Hodgkin’s lymphoma in children aged 5 years or less – the United
Kingdom experience. European Journal of Cancer, 2007. 43: 1415–1421.
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  [email protected]
●
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 [email protected]
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

Hodgkin lymphoma in children Freephone helpline 0808 808 5555 www.lymphomas.org.uk

Transcription

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