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Long term effects of treatment

We have a large section about the treatments used for retinoblastoma, this includes many of the treatments which have been used in years gone by.   Most treatments change slightly as the use of them becomes more common however the main principles remain the same.  To look up the treatment you had as a child click on the treatment link at the bottom of the page, this will take you into the section written specifically for parents of children with Rb.

Most treatments have side effects.  When a prescribing doctor makes a decision on which treatment to use they weigh up the expected results of the treatment with the risks of possible side effects.  They expect that a treatment will be successful however they know that the side effects of a particular treatment may be life long.  Detailed below is information about some of the long term side effects of treatment.  This information is intended to be informative and useful.  If you would like some support in relation to this subject contact our support workers to be directed to the most appropriate professional.

Anyone affected by retinoblastoma as a child should attend a follow-up clinic with an oncologist to discuss the treatment they had as a child and any consequences of this and the retinoblastoma.

Late effects of chemotherapy for retinoblastoma

The chemotherapy drugs used to treat retinoblastoma (carboplatin, etoposide and vincristine) are very well tolerated and most patients will not experience any significant long term effects . However, a small number may develop complications.  These are specific to the drug  and tend to occur with greater frequency the higher the dose received. The specific complications that may occur after retinoblastoma treatment are:

Hearing problems

Hearing problems after cancer treatment are uncommon but they may occur with certain drugs and after radiotherapy to the head, in the region of the ear. Carboplatin is a drug which very infrequently may cause hearing impairment (i.e. partial deafness).  This causes particular difficulty in hearing high pitched noises, and can be detected by sensitive hearing tests.  It is seldom severe enough to be noticeable by either the parents, their family or friends, since the lower pitched noises used for speech are not usually affected.  Hearing problems due to carboplatin do not get worse after treatment has finished but once hearing problems are present, they usually remain.

Kidney problems

Kidney problems can occur after carboplatin, but fortunately they are rare and not usually severe.  The main job of the kidney is to get rid of waste products from the blood stream into the urine.  It is also involved in controlling blood pressure. Carboplatin can reduce the efficiency with which the kidneys ‘clean’ the blood, and may make the kidneys ‘leaky’.  This means that the body loses too much of certain substances, e.g. some salts such as phosphate.  These substances may need to be replaced by medicines or tablets taken regularly to ‘supplement’ the losses from the kidneys.  Kidney damage is always evident at or within a few months of finishing.  Patients whose kidneys are working satisfactorily at the end of their treatment should not develop problems in the future although the  doctor will organise checks from time to time to be sure.

Second malignancies

Acute myeloid leukaemia is a rare second malignancy amongst retinoblastoma patients.  This may be linked to the use of chemotherapy, particularly etoposide, but the underlying risk factors are unclear.

If you want to know more about any of the side effects mentioned here then make an appointment to speak to one of the oncologists at the retinoblastoma centres.  Contact details below.

Overall, side effects from chemotherapy are reassuringly low and most patients can expect very few late effects.  Occasionally, if first line drugs have not been successful or if treatment was given many years ago, additional or alternative chemotherapy drugs will be used to treat retinoblastoma.  The side effects of these will be discussed with the patient on an individual basis, as they will vary with the drug and dose received.


The Retinoblastoma Service, The Royal London Hospital, 020 3594 1419
The Retinoblastoma Service, Birmingham Children's Hospital, 0121 333 9475


Intra-arterial chemotherapy for retinoblastoma

Intra-arterial chemotherapy is a new method of giving chemotherapy directly into the ophthalmic artery and is being used in the treatment of retinoblastoma when other treatments have not been successful. Intra-arterial chemotherapy enables a higher dose of chemotherapy to be given to the eye and results in fewer general side effects associated with conventional chemotherapy e.g lowering of blood count, hair loss, nausea and vomiting.  During the procedure, which is performed under general anaesthetic, a small tube is inserted into an artery in the groin and then threaded all the way up to the ophthalmic artery which supplies blood to the eye. Once in the correct position, the chemotherapy is given.

Following administration of intra-arterial chemotherapy children may experience swelling around the eye, flushing of the skin around the eye and forehead and droopiness of the eyelid.  Children may also experience a minor drop in their blood count. A number of children experience a drop in the vision in the treated eye which may be temporary or, in a proportion of cases, permanent.

If you want to know more about any of the side effects mentioned here then make an appointment to speak to one of the oncologists at the retinoblastoma centres.


The Retinoblastoma Service, The Royal London Hospital, 020 3594 1419
The Retinoblastoma Service, Birmingham Children's Hospital, 0121 333 9475


Late effects of radiotherapy


After whole eye radiotherapy, most children will develop a cataract. A method of radiotherapy called lens sparing radiotherapy has been devised, which is suitable for many children requiring external beam radiotherapy, and cataracts do not occur with this technique. If a cataract does develop after whole eye radiotherapy, it can be removed by a simple operation, and the child will then be given special glasses to correct their vision. Unfortunately, following removal of the cataract, the eye is likely to be rather sensitive to bright light.

Dry eye

Whole eye radiotherapy also results in a rather dry eye, caused by to damage of the lachrymal glands, which produce tears. A dry eye is more susceptible to infection, to damage from dust and air pollution, and to extremes of temperature. Therefore, children treated by whole eye radiotherapy will need to use artificial tears or eye drops to lubricate and keep the eye moist on a long-term basis. This problem is much less evident after "lens-sparing" radiotherapy.

Facial asymmetry

Another late effect of radiotherapy is a reduction in the growth of the bones around the eye socket. If the radiotherapy beam has exited through the jaw, dental problems may also occur, and for this reason, children should be monitored regularly by an orthodontist.

Retinal detachment

Very rarely, the retina may become detached some months or possibly years after successful treatment for retinoblastoma. This tends to occur in eyes that were treated for large tumours and in certain eyes that received cryotherapy. People of all ages, who had retinoblastoma as a child have been advised by the professionals to refrain from diving until this issue has been discussed with their ophthalmologist. Any sudden deterioration in vision should be taken seriously, and people are advised to make an urgent appointment to see the ophthalmologist.

If you want to know more about any of the side effects mentioned here then make an appointment to speak to one of the oncologists at the retinoblastoma centres as part of a follow up appointment.


The Retinoblastoma Service, The Royal London Hospital, 020 3594 1419
The Retinoblastoma Service, Birmingham Children's Hospital, 0121 333 9475



Artificial eyes and possible concerns

If you have an artificial eye it is good practice to have this checked regularly, perhaps yearly unless you have decided with your prosthetist that less often appointments are fine.  People in the UK can visit the NHS National Artificial Eye Service (NAES) or a private ocularist about their artificial eye.  There are also a small number of NHS ocularist services in the UK which are not part of the NAES.  Your GP can make referrals to any of the NHS services. When you visit an artificial eye service you must make sure you are completely happy with the eye that has been made for you.  If you are not happy then you are entitled to tell them why.  They want to make the best possible match for you so will be happy to deal with your concerns.

If you are unhappy with the cosmetic appearance of your implant or the shape of your socket or eye lid, you should first see a prosthetist. Care of the artificial eye by a prosthetist is associated with less socket problems. If the prosthetist is unable to improve the appearance, then a referral to a local oculoplastic/orbital surgeon via the GP is important as reconstruction of the socket may be possible or necessary.



If any of the issues mentioned above affect you then you can make an appointment to discuss them with a member of the retinoblastoma teams.

The Retinoblastoma Service, The Royal London Hospital, 020 3594 1419
The Retinoblastoma Service, Birmingham Children's Hospital, 0121 333 9475



Information about retinoblastoma (Rb) treatment. This link takes you out of Adults after Rb and into Parents.


Second primary cancers

Information on the risk of second primary cancers.