Treatment
Surgery
Please note – your child’s treatment will be discussed with you and will be specific to your child – the following information may be useful.
After a child has been diagnosed with medulloblastoma it will be necessary to remove as much of the tumour as possible. Before this is carried out a team of specialist doctors including a consultant and neurosurgeon will discuss the treatment plan and whether an operation is possible. Sometimes a biopsy may be carried out to determine the type of tumour and how aggressive it is. Usually, though, the surgery will involve removing as much as possible of the tumour without damaging the surrounding tissue. The removed tissue will then be analysed to determine the type of tumour.
Often a child will have a build up of pressure in the head due to raised intracranial pressure caused by increased cerebrospinal fluid. This pressure can cause nausea, sickness and vomiting. Sometimes an operation is carried out to relieve this pressure by putting in a shunt (a device that drains the excess fluid). Steroid drugs are often successful temporarily in relieving the pressure. Before and after surgery, many people need to take steroids either as tablets or injections, this is usually dexamethasone. Steroids are anti-inflammatories and will reduce swelling to keep symptoms under control. Steroids cannot be taken indefinitely and once symptoms are under control the steroids will gradually be reduced.
Before surgery the risks will be discussed with parents/carers and a consent form will need to be signed. The neurosurgeon and anesthetist will discuss with the patient what will be involved. The surgery involves a craniotomy (removal of part of the skull to allow access to the brain). The neurosurgeon will attempt to remove as much of the tumour as possible. If a tumour is incompletely removed it is called debulking. This may help to control symptoms and delay its growth and it will be easier for radiotherapy or chemotherapy drugs to reach the cancerous cells that are left.
After surgery, the patient will be monitored in an intensive-care unit. Parent/carers will be allowed to see their child once they have regained consciousness from the anesthetic.
Surgery may cause other neurological complications. Children can be left with a weakness in either their left or right side. Often this can be helped with regular physiotherapy. Visual problems can also occur resulting in double vision or light sensitivity. Speech can also be affected but usually resolves itself after time or with the help of a speech therapist. Swelling after the surgery can cause headaches, nausea and sickness. Medication can be given to help with this.
The information provided is intended to give a general idea but is not a substitute for professional/medical advice.
Radiotherapy
Please note – radiotherapy treatment is tailored to the individual. Your doctor will discuss the treatment plan with you.
The following will give you an idea of what may be involved.
What is radiotherapy and how does it work?
Radiotherapy uses measured doses of radiation using a machine which will direct the x-rays at the cancer area. It is aimed at the cancer cells to kill them and therefore stop further cancer spread. It will try to destroy the cancer cells whilst causing as little damage as possible to normal cells. Radical treatment is aimed at being curative. Palliative treatment will try to stop the cancer from spreading further to try to alleviate symptoms.
Radiotherapy can be used to shrink a tumour before surgery or after surgery to stop it from coming back.
Before radiotherapy is given the patient and/or carer will have a discussion with a clinical oncologist in charge of the treatment. The doctor will discuss what is involved and the possible side effects. A consent form will need to be signed. Often written information is supplied.
Radiotherapy is often given over a six week period involving treatment each weekday. Treatment initially may take as long as 50 minutes or more if head and spine is involved but can be as little as 10-20 minutes.
Treatment planning
Scans already taken before treatment are used by the radiographers to help plan the treatment. It will involve having a mask made as the patient must be as still as possible when having radiotherapy to the brain. The mask is usually made of Perspex.
The mould room
A mask will be made in the mould room. This can be difficult for a child if they are experiencing back pain from the cancer as it involves lying flat. A pillow or wedge can be used to raise the knees to help ease any back pain. First a mould will be made for the back of the head, neck and shoulders. It involves lying on what looks like an inflated pillow. When the child is in the correct position the pillow will be deflated and will become rock hard. Next a gel is applied to the face and neck area which is quick setting. It will be cold and can upset children. Plaster of Paris bandages are then applied all over the face and neck area but will not cover the mouth or nose. Also, if the child prefers, the eyes can remain uncovered. Once the mask has set it will be eased off. The perspex mask and pillow will be used each time the child has radiotherapy to ensure the child is in the correct position and to prevent movement.
The planning room
Planning the treatment involves lying very still and flat on a couch. The radiographer will position the patient very carefully and the mask will be fixed to the couch to prevent any movement. If treatment involves the spine then tattoos will be made to the treatment area by using a permanent ink but will be just a tiny dot. Treatment to the head will involve marks being made on the mask. Treatment is planned for the individual and may differ in length of treatment. Treatment or fractions are usually given once a day over six weeks. It will usually involve visits as an outpatient.
Treatment
The length of each session will depend on the area to be treated. However the first session is usually quite long (40-50 minutes or more) as it takes a lot of preparation and the radiographer will need to line up the machine with the tattoos. Once this is done the radiographer(s) will leave the room to start the treatment but will still be able to communicate with the patient. If the patient is in discomfort the radiographer will be able to assist immediately. A closed circuit camera will be used to keep a close eye on the patient while the treatment is being given. Parents can stay in the room with the radiographers. The sessions will get shorter over time (10-20 minutes). Music or story tapes can be listened to whilst treatment is given. The machine will move at times and the radiographer may come into the room to reposition or make adjustments if necessary.
Side effects
Some children may experience nausea and sickness especially if the treatment involves the spine. Anti-sickness medication can be given. The area being treated can get red and sore. A special cream can be prescribed which does not include any metallic ingredients to help with this. The skin must be protected during and after treatment. The area treated should not be exposed to the sun without suncream to protect it. Tiredness can also be a problem as treatment continues and even after treatment has finished. Hair loss in the area treated can be very upsetting for children especially girls but it will grow back when treatment is completed. Blood tests will be carried out regularly as blood count can be affected especially causing anaemia.
Chemotherapy
Please note – the chemotherapy protocol will be specific to each individual and will be discussed by the consultant oncologist. The following information may be of help.
What is chemotherapy?
Chemotherapy is a treatment with anti-cancer drugs which are given to kill off or control cancer cells. There are many drugs which can be used and in different combinations for a particular protocol. The protocol will be discussed by the consultant oncologist with the patient/carers dependant on the type of cancer and the stage it is at. It will be given to kill the cancer cells and to try to stop the cancer from returning. It may be given to shrink the tumour to reduce the symptoms.
How does it work?
The chemotherapy can be given orally in tablet form or intravenously (drip). Sometimes it may be given by injection. If it is given intravenously it can be administered by a cannula inserted into a vein or through central venous access. A Portacath or Hickman line is a fine tube inserted into a vein by general anaesthetic through which chemotherapy can be given. It can also be used to take blood samples.
A patient can receive chemotherapy as an outpatient/day patient. If several chemotherapy drugs are given with lot of fluids it may take longer and involve a short hospital stay. Some chemotherapy can be administered by community nurses in the patient’s home or at a local hospital. Before chemotherapy is given blood tests are taken to ensure the blood count is satisfactory as chemotherapy will affect the blood.
Side effects
Chemotherapy affects the production of blood cells. Usually 7-21 days after the chemotherapy is given.
Infection – White blood cells help to fight off infection. If the blood count is low, then infections may be easily picked up. Serious infections such as chicken pox or measles can be very dangerous. A high temperature, shivering, sore throat or cough can be an indication of an infection and may need to be treated with antibiotics. A temperature of 38-38,5 should be notified to a doctor or community nurse immediately.
Anaemia – Red blood cells carry oxygen around the body. If they are low this may result in anaemia which can leave a patient feeling tired, short of breath and pale. If the red cells are very low it may be necessary to have a blood transfusion.
Low platelets – Chemotherapy can affect platelets which help to clot the blood. If platelets are low then tiny little red spots may appear or bruising. A platelet transfusion may need to be given.
Usually three to four weeks after chemotherapy the blood count should recover. Blood tests will be taken regularly to check the blood count.
Other side effects
Hair loss – chemotherapy will usually result in hair loss including eyebrows and eyelashes. However, the hair will grow back within a few months after treatment has finished. This can be more distressing for girls but hats with or without hair extensions can be worn. Boys can wear caps if they wish.
Sore mouth/ulcers – it is important to maintain oral hygiene to prevent infection. A special mouthwash can be prescribed for patients. If dental treatment is needed it is important to notify the dentist of the treatment protocol (and medication if requested).
Nausea and vomiting – chemotherapy drugs can cause nausea and vomiting although it very much depends on the individual and some patients will suffer more than others. Anti-sickness medication (anti-emetics) can be given to help with this. It may be necessary to try a combination of anti-sickness drugs before the right combination is found.
Loss of appetite – often patients will lose their appetite and will not feel like eating or drinking. Small, frequent meals may help. If weight loss becomes a problem because of lack of appetite and nausea/vomiting then a discussion with a dietician will be necessary and meal supplements may be prescribed. This is usually high calorie drinks or soup.
Constipation – chemotherapy can cause constipation or diarrhoea. A nurse or doctor should be consulted if this occurs. Medication can be give to help with this.
Dry skin – skin can become dry and sore. An aqueous cream can help prevent dryness. It is important to cover up the skin and wear a sunscreen before exposure to the sun.
High frequency hearing loss – chemotherapy can cause high frequency hearing loss and hearing test may be carried out during treatment. If the chemotherapy is affecting hearing then a different drug may be used. The consultant oncologist will advise.
Effect on the kidneys – some chemotherapy drugs may affect the function of the kidneys and a regular kidney function test may be carried out during treatment.
Effect on the nerves – tingling sensation, numbness or loss of sensation may be experienced. Pins and needles in the hands or feet may be felt.
Tiredness – patients often become tired. This is normal but it may also be caused by anaemia therefore it is important to tell the nurse or doctor.
