My treatment

You may be interested to know more about the treatment you had as a young child.  This pages gives you information about all the treatments which are used for retinoblastoma (Rb) now.

Cryotherapy

Cryotherapy works by making the eye really cold.  The doctors will put an instrument that looks like a pen on your eye which freezes the tumour to stop it from growing.  You might have to have this done up to three times depending on what the doctor advises.  This will be done while you are under anaesthetic and your eye might be a bit sore when you wake up, but if it is you can take some medicine.  The doctor will also give you cream to take home which you will need to put on the eye that had the cryotherapy for about 5 days or as long as prescribed.

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Laser

Laser therapy is a treatment that involves an infra-red beam which is directed onto the surface of the tumour to destroy it.  It is done under general anaesthetic and the doctor will direct the infra-red beam directly to the tumour through the pupil.  This can sometimes be combined with chemotherapy.  If this is necessary, an infusion of chemotherapy is given and then the laser will be given the same day.  Normally laser therapy is given in one or two sessions.

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Chemotherapy

Chemotherapy is a type of medicine that is commonly used as a cancer treatment.  For retinoblastoma you will usually need to have about 4-6 cycles of chemotherapy.  In order to get it you will need to have a special tube inserted inside your chest; which is called a Hickman line or port.  The chemotherapy will then be given through this tube and will take about 6-8 hours each cycle.  The Hickman line or port will stay in your chest until you have finished all of your cycles.  Chemotherapy not only kills the bad cancer cells but some of the good cells as well which means that it can make you feel a bit tired, sick and sometimes your hair can fall out. Once you have finished all of the chemotherapy your hair will grow back.

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Intra-arterial chemotherapy (IAC) or Melphalan (IAM)

Intra-arterial Melphalan is a specific chemotherapy drug that is given under general anaesthetic. A catheter (which looks like a long straw or tube) is feed all way up through the inside of your leg and all the way to your eye.  The doctor will then put the Melephalan chemotherapy medicine in, it goes through the tube, directly into the eye that needs treatment.  It takes about 30 minutes to give the Melphalan.  You may need to have up to two doses of this chemotherapy.

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Enucleation

Enucleation means the removal of an eye.  This is done in retinoblastoma when the tumour(s) are so large that no other treatment can be used. An enucleation is done under anaesthetic and takes about two hours.  When you wake up you will have a conformer in your eye which is a temporary eye that looks like a large contact lens but resembles an eye.  You will need to keep this in for about six weeks until you are able to get an artificial eye.

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Radiotherapy

Radiotherapy is a treatment that can be given to the whole eye.  It is done by using high-energy invisible rays from a machine, these rays destroy cancer cells.  This treatment is usually given everyday, five days a week, for four weeks, but this can change depending on what the doctor suggests.

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Radioactive plaque

Plaques are small radioactive discs that are stitched to the outer surface of the back of the eye, this is done under general anaesthetic.  Each plaque has a time limit that it needs to stay on for in order to give the correct amount of medicine.  While the plaque is in place, you will need to stay in isolation at the hospital and wear a patch over your eye.  The doctors will take the plaque out under general anaesthetic.

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Click on the links below for further pages within this section you might like to read:

School/college/work

Looks at different ways of telling your friends and colleagues about how retinoblastoma affected you, how to tackle negative comments and how to keep safe.

Who can I talk to?

Need someone to talk to? Whether it is someone who has been through a similar experience or a medical expert for advice we can point you in the right direction.

My story

Hear our younger members' accounts of how they have been affected by retinoblastoma and how they have overcome any difficulties.

Into adulthood

Looks at further considerations adults who had Rb as a child may have depending on treatment and the type of retinoblastoma they were diagnosed with.

Extras and links

Some links to some other relevant websites you might find interesting which are especially designed for young people.