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Dr. Ian Clark, paediatric ophthalmologist at Children's Hospital of Winnipeg, Canada, and Dr Judith Kingston, paediatric oncologist at Great Ormond Street Children's Hospital in London, England, apply their combined exprience with retinoblastoma to answer your pain related questions.
Radiotherapy | Enucleation | Second Primary Tumour
What causes pain in the eye when Rb hasn’t yet been treated?
A retinoblastoma tumour by itself is not painful. If the eye becomes painful, it is because the tumour is interfering with some aspect of the eye’s working processes. The commonest cause of a painful eye with untreated retinoblastoma is increased pressure in the eye (glaucoma).
The inside of an eye is constantly producing a fluid to nourish parts of the eye that have no blood supply (like the lens). This fluid has to escape and does so all the time, draining into tiny blood vessels around the eye. Drainage can be disrupted by large retinoblastoma tumours. The resulting pain can cause loss of appetite, nausea and even vomiting if the pressure gets very high. Eye pressure can be brought down by giving either eye drops or a liquid medicine taken by mouth.
How does the presence of glaucoma at diagnosis impact the chances of preserving an eye?
In most cases, the presence of glaucoma in an eye with retinoblastoma signifies that the tumour is advanced. As such, the chance of saving the eye is small and the risks of keeping the eye are increased. Therefore glaucoma is usually an indication to proceed to an enucleation.
My daughter almost always gets a little throat infection following EUAs. Why is that? Am I doing something wrong in preparing her for them? She is in her fifth round of chemo.
The endotracheal tube or laryngeal mask used to safeguard the airway during the general anaesthetic, can sometimes cause minor trauma locally. If your child is old enough to suck a lozenge with some anaesthetic in it, for example Tyrozets, that would help relieve the soreness – otherwise Calpol is probably the best option. Also best to keep to soft, non-spicy foods such as mashed potato, ice cream or yoghurt with honey for 24 hours after the EUA.
My daughter’s eye is always very puffy and sore after cryo. What causes that exactly, and can something be given to reduce the impact?
Cryotherapy freezes tumour tissue to damage it. Retinoblastoma is sensitive to this treatment and it can be used to kill tumour cells situated near the front of the eye.
Unlike laser treatment, cryotherapy is relatively non-specific. When the ophthalmologist positions the cryotherapy probe to deliver the treatment, the probe will also freeze other adjacent tissue. These tissues are less sensitive to cryotherapy, so they will not die, but there will be some inflammation as they recover, which causes redness, swelling and some discomfort.
The discomfort can be reduced by taking “simple analgesics” (pain relief medicines) such as paracetamol (acetaminophen / tylanol) or ibuprofen. Ibuprofen is also an anti-inflammatory medicine. It is important to check with your oncologist before using these medicines as they may be contraindicated for some patients on chemotherapy.
The swelling will usually settle after a few days. Keeping your child’s head slightly elevated during sleep will help to keep the swelling down. Cold compresses will also help, although some child may not take kindly to their use. These work best during the first 24-48 hours.
Never put ice directly on the skin, rather wrap some ice in a wet facecloth and hold that over closed eyelids. Alternatively, dip a facecloth in clean iced water, wring it out so it isn’t dripping, and hold it over the eyelids. Repeat when it is no longer cool.
Are there any good non-drug therapies we can use to help reduce post-focal therapy pain?
Cool compresses can help, but not every child will take kindly to having something cold held over an already-sore eye. If your child has only received laser treatment, be |reassured that their distress is more due to disorientation and hunger, and will settle with a sleep. Children are helped by reassurance, explanation, a calm manner from trusted adults, and distraction by pleasurable activities.
Does ocular haemorrhage in Rb cause pain?
Bleeding into the eye rarely causes any pain at all. The only rare exception is if there is a bleeding at the front of the eye, which can cause glaucoma (discussed above).
Does sub conjuctival carboplatin cause pain with the swelling/bruising? What kind? If there is minimal swelling/bruising, does the child still feel pain, and how can I reduce it?
Subconjunctival carboplatin injections can cause dramatic swelling and some pain. The pain is probably sharp and gritty, like conjunctivitis, and will be less if there is only minimal swelling. Swelling is a sign of inflammation, which is what causes the pain.
There is not yet an effective way to minimise swelling significantly. However, It can be reduced to a degree by the surgeon injecting some steroid at the time of the carboplatin injection, and by using steroid eye drops for 72 hours after the procedure. Sleeping with the child’s head elevated can also speed up the rate at which swelling settles. Swelling usually settles over a few days.
Any injection can cause bruising, and if a child has low platelets, a small bruise can become quite large. The site of the injection will also impact on how much swelling occurs as injections closer to the eyelids will be more apparent than injections behind the eye.
Remember that an eye can look quite swollen and bruised without being painful. Despite this, children can find swelling distressing if it is a struggle to keep the eyelids open. So reassure them that it will soon settle.
My son had terrible bone pain during chemo (he didn’t get GSCF). We were told is was caused by vincristine. We are looking at doing another course of treatment following new tumour growth. Can something be done to control that pain?
Vincristine often causes aching pains, particularly in the lower legs and feet, but this can usually be controlled by Paracetamol. For more severe neuropathic pain which is sometimes seen following Vincristine, Gabapentin (Neurontin) is probably the best drug to give to alleviate the pain.
Can chemo increase risk of soft tissue injuries and pain long after treatment?
Vincristine can sometimes cause damage to the peripheral nerves, resulting in tingling sensations like “pins and needles”, sometimes numbness and loss of sensation, and sometimes weakness of the peripheral muscles, resulting in foot drop. Although these problems are usually reversible, and sensation and function recover when the drug is discontinued, some patients complain of aching pains in the lower legs, and a tendency to cold feet and hands many years later. This may be a persistent effect of Vincristine on the nerves supplying the blood vessels, so it is possible that some of the damage may be permanent.
Vincristine can also occasionally cause long-term tightening of the Achilles Tendon, but not inflammation of the tendon.
We always have a terrible time finding veins for IVs and blood samples. We always try hard to keep her hands warm, and keep her hydrated beforehand. What else can we do to reduce this problem?
The only way to avoid this problem is to have a central line fitted. Central intravenous lines are used as part of standard practice in children receiving chemotherapy in most developed countries, but unfortunately in poorly resourced countries this may not be possible.
If having a central line inserted is not possible for your child, the only way to try to preserve her veins is always to ensure that any drugs given through the peripheral cannula are diluted well, and that the cannula is flushed well with saline after the drug has been administered. It is the irritant effect of the drugs rather than the cannula which causes the vein to harden and clot.
Why don’t kids in developing countries get a central line for chemo? It seems very mean to not use that and make them have lots of pokes every time. Surely it doesn’t cost that much?
Central lines are much more expensive compared to cannulae, and often the doctors do not have the expertise or equipment needed to insert them. With adequate training and additional resources, this should be possible.
However lack of community nurse support, great distance from medical care and poor access to intravenous antibiotics may be a significant problem in many countries. In such circumstances, insertion of a portacath may be the safer (but more expensive) option, if skilled personnel and material resources are available.
Radiation caused a bad sunburn rash that is just fading. Is that painful or just uncomfortable? We used a cream every day for it. It’s hard to know whether the tears are from pain or from feeling something unfamiliar, in all the unsettling experience of treatment.
The pain and discomfort from a radiation reaction is the same as one gets with ordinary sunburn – I think the redness is quite painful but this pain is best alleviated by topical applications of cream together with some Calpol/Paracetamol if the discomfortis not relieved by the cream.
I had radiotherapy as a baby and my eye is very dry, which causes considerable pain at times. I use drops to reduce the problem, but have only been doing this for the last two years. Does it make a difference to begin using artificial tears early on after treatment, even if there is no apparent problem, rather than waiting until problems occur in adulthood?
Tears are important as they lubricate the eye surface, wash away debris, and provide some protection against infection. When an eye has been enucleated, tears provide the same basic functions for the socket. Everyone’s tear production declines as we age. Radiotherapy causes a particularly rapid decline in tear production, such that it can become a major problem even in childhood.
Artificial tears attempt to replicate the lubrication provided by natural tears. This can be important after radiotherapy as a dry eye is uncomfortable and, if the problem is severe, it can lead to corneal ulceration and scarring. Artificial tears are also important for keeping the socket lubricated and comfortable, particularly if a prosthesis is used.
Artificial tears are harmless drops or gels. Problems only arise if a patient develops an allergy to one of the constituents. Drops are less messy but do not last as long as the gels, so they have to be used more often.
Children don’t usually experience problems with a “dry socket”, but it does no harm to see if they feel more comfortable after using a lubricant. . Placing an artificial tear gel on a prosthesis can also make it easier to insert.
If you are having problems with a dry eye or eye socket, it would be useful to see your retinoblastoma specialist, an oculoplastic or corneal specialist, or your ocularist, depending on the nature of your problems.
Why did our daughter’s eye look so bruised after enucleation?
During enucleation, the muscles that attach to the eye are cut, as is the optic nerve behind the eye. These structures have a blood supply, and are capable of causing a lot of bruising. The eye muscles are generally not a major problem as they are sutured to the orbital implant at the time of surgery, . The sutures help to stop the cut ends of the muscles from bleeding.
The optic nerve is not sutured to anything, and it invariably bleeds when cut. Measures are taken at the time of surgery to stop the bleeding, and the ophthalmologist will not proceed to put an implant in the socket until he/she is satisfied that the bleeding has stopped. However, it is possible that further bleeding or oozing can occur from these and other blood vessels.
The amount of bruising and swelling after enucleation varies from one person to another, but it is likely there eyelids will be puffy and a “black eye” will develop, due to the way blood collects around the eyelids. This will heal over a week or two. And will not have any impact on the lasting cosmetic effect.
Our daughter is only 4 months old, and it’s difficult to know if she is in pain after procedures or just mad at the world. When in doubt, what is the best advice on pain management following enucleation?
Some procedures, such as examination under anaesthesia or laser treatment, are not associated with any post-operative pain. Assuming the same anaesthetic technique is being used, you may be able to tell whether there is a difference in your child’s reaction to different procedures. There is only a limited range of treatments for retinoblastoma, and the doctors should be able explain how much discomfort they anticipate after a given procedure. They will also be able to explain their plans or protocols to help your child recover in comfort.
It is always best to keep on top of pain: pain leads to anxiety and this will make the child more sensitive to painful stimuli. Children will always receive a good dose of pain-relief medicine in the operating theatre. After this, regular dosing with simple analgesia (such as paracetamol) in the first few days after enucleation will usually be sufficient to keep a child comfortable. These medicines are quite safe and should not be withheld for fear of giving too much, as long as dosing guidelines are followed.
If stronger pain relief is needed, the use of “opiates” (such as codeine or morphine) can be considered. However, care needs to be taken as opiates can cause nausea, which can also make a child grumpy.
If your child is receiving chemotherapy, it is always wise to check with your oncologist whether pain-relief medicines are safe, prior to using them.
The benefit of positive support should not be overlooked. Remember that even young children are very astute, and they will pick up on any negative vibes from their parents. Lots of loving encouragement will go a long way to helping a child through their recovery.
Does a person who has had an eye removed get phantom pains the way a limb amputee does? If so, does a person with an implant/prosthetic eye get the same sensation?
This is not a problem that is encountered by ophthalmologists looking after children with retinoblastoma. Enucleations are also performed on adults for other conditions and they do not describe phantom eye pains. Children who have glaucoma prior to their enucleation typically feel much better within days of their enucleation as they no longer have a painful eye.
What kind of pain/pressure/discomfort does one feel when the prosthetic eye is being put in or removed? Does it hurt to take out and replace the prosthetic?
Conjunctiva is the “skin” that covers the white of a normal eye. It is relatively numb – you can see for yourself by looking in a mirror and touching the white of your own eye. After enucleation, the conjunctiva covers the whole eye socket. When the swelling settles, the socket is relatively numb and it will not hurt to put in or remove a prosthesis. We know this from adult patients who wear a prosthesis.
The struggle typically seen with children learning to deal with a prosthesis arises from the strong natural instinct to protect the eyes. The doctors, ocularist (maker of artificial eyes) and child life specialists can help the whole family learn how to deal with keeping a socket healthy, and how to handle a prosthesis (remember how important it is that your child learns a positive attitude about this from his/her parents).
If one method of removing and replacing the prosthesis is causing problems, it is worth asking the professionals, support groups and other families about the alternatives. Once a child has the hang of things, the eye can be removed and inserted quite painlessly.
If a child doesn’t get an eye or an implant, can that cause them pain?
No, the use of an implant and artificial eye are for cosmetic benefit and no physical pain is caused if they are not used. However, restoration of a near normal eye appearance is very important for a child’s psychosocial wellbeing, and lack of an implant and prosthetic eye can cause considerable emotional distress.
The implant fills the space created by removing an eye. Without an implant, it is very difficult to fit a good prosthesis. If a prosthesis does not sit comfortably in the socket, it can cause discomfort, and other problems such as being unstable and prone to falling out. A child’s orbit (the bones around the eye socket) may also not grow in a normal fashion without the placement of an implant. Again, this will not cause pain, but will lead to some facial asymmetry.
There should be no pain if a child has an implant but no prothesis. However, every effort should be made to have some sort of prosthesis or shell in place to preserve the natural folds that extend under our eyelids. These folds allow a prosthesis to be larger than the opening of the eyelids, enabling the eyelids to hold the prosthesis firmly in place. If these are not preserved, it will be very difficult to fit a prosthesis later in life.
How can I tell when a headache is just a headache, and when it is something I should act on for my child?
As you know, everybody gets a headache from time to time and some children get more headaches than others. However, if the headaches are frequent – i.e. occur nearly every day - or if they are associated with other symptoms such as vomiting, blurring of vision or unsteadiness, then they should be brought to the attention of your child’s doctor as a matter of urgency. Also, headaches on waking in the morning are usually more worrying than those that come on at the end of the day when the child is tired.
Most info sheets I have looked at are vague about the type of pain one should be wary of in relation to osteosarcoma. What is the best advice for us when knowing our child has a risk for that cancer?
The most common site for osteosarcoma is around the knee joint. The pain from an osteosarcoma in the lower limb is usually an aching pain which gets worse on weight bearing, and therefore is relieved when the child is sitting or lying down. If the pain is associated with any swelling, it needs to be investigated promptly.
Focused Care Q&A will get to grips with EUAs, including EUAs for unaffected at risk siblings. If you have any questions for us on this subject, please send them in before July 31 to news@daisyseyecancerfund.org
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