Radiotherapy has been recommended as part of your treatment plan. This information sheet will provide answers to some of the more common questions that are asked by our patients about this treatment.
The Head and Neck Oncology team will meet with you and discuss the treatment options. If you have any further questions about your treatment, you can contact a member of the head and neck team via the contact numbers below or those listed in the head and neck service leaflet PIN0413, which will provided alongside this leaflet.
If you need to see your GP (General Practitioner), GP practice nurse or district nurse during or after treatment about radiotherapy or chemo-radiotherapy side effects please have this information leaflet with you for reference.
Contact; when you call the hospital and attend appointments is it useful to have your hospital number to hand.
My hospital number …………………………….
My consultant oncologist is ………………………………..
Your key worker during radiotherapy is Jo Gemmill, Advanced Practice Radiographer in head and neck radiotherapy and chemo-radiotherapy.
Jo works Monday, Wednesday and Thursday and has a confidential answerphone for any radiotherapy or chemo-radiotherapy queries on 01223 596330.
- Radiotherapy reception (for appointment queries): 01223 216634.
- During and after treatment, If you are unwell, please call the 24 hour Acute Oncology Service on 01223 274224.
What is radiotherapy?
Radiotherapy is the use of high energy x-rays to treat cancer (malignant) and some benign (non-cancerous) tumours. It works by damaging cells within the area of treatment. Although the area treated with radiotherapy is tailored as much as possible to target only the tumour cells, some normal tissue will be within the treatment area and they are also affected by the radiotherapy.
Where do I go for radiotherapy appointments?
Radiotherapy is planned and delivered in the Radiotherapy Department, which is part of the Oncology Department at Addenbrooke’s Hospital, located on level 2 in outpatients. Treatments are usually delivered as daily outpatient appointments from Monday to Friday, occasionally Saturdays or in some circumstances you may have two treatments on one day scheduled.
Your Oncology team will decide how many treatments are most appropriate for you. Treatment regimens vary according to individual needs.
How is radiotherapy treatment given?
The treatment machine used to deliver radiotherapy is called a linear accelerator ('Linac' or 'LA') or tomotherapy unit ('Tomo'). These treatment machines direct high-energy radiotherapy beams over a carefully planned area of treatment. In order to deliver treatment patients are carefully positioned. You will be asked to lie flat on a treatment couch, which is similar to a CT (computed tomography) scanner couch, in the radiotherapy room. Although the treatment machines can be noisy the radiotherapy beams cannot be seen and the procedure itself is painless, much like having an x-ray or CT scan. Radiotherapy can be given conventionally or with image guided intensity modulated radiotherapy (IG IMRT). The team will decide which is most appropriate for your treatment.
Radiotherapy is planned and delivered by male and female radiotherapy radiographers.
How long will I be in the Radiotherapy Department?
We recommend you allow at least two hours for a planning appointment and for pre-treatment or post-treatment appointments.
Please allow at least one hour for radiotherapy treatment appointments.
On review clinic days allow at least two hours in the department. You will have radiotherapy treatment and be seen by the head and neck team in clinic. These clinics are run in the oncology department alongside your radiotherapy treatment appointment and will appear on your treatment schedule.
The Outpatient Pharmacy is very busy; please let the head and neck team know in clinic if you are running low on medications to avoid running out. Allow extra time if you think you may need a prescription and to collect a prescription. Please continue to get any routine prescriptions from your GP. For some patients swallowing tablets can become difficult. Please discuss liquid/ soluble options for routine medication with your GP or pharmacist.
Hospital transport patients may need to let transport know they will be at the hospital for longer on clinic days and to collect prescriptions. More information on this can be found from your transport service.
Patients needing chemotherapy will need to allow more time on chemotherapy days. Please see the chemotherapy section regarding this.
Radiotherapy treatment requires you to be carefully positioned for the radiotherapy beams to be delivered accurately to the target area. The position for treatment needs to be precisely replicated for each radiotherapy treatment. You will also need help to stay as still as possible while you are positioned for treatment and while the treatment is being delivered. A device called an immobilisation mask will be made for you. The mask is made at the planning CT scan appointment.
What is a mask?
A mask is individually made for each patient having head and neck radiotherapy. It is made from a thermoplastic material which is moulded to your shape. The mask will cover your head, face and shoulders. You can see and breathe through the mask.
The mask serves three purposes:
- it ensures that you are comfortably and securely in the same position every time you have radiotherapy treatment
- it helps you to keep still while the radiotherapy is being delivered
- any marks needed to position the treatment can be drawn on the mask and not on your skin
What can I do to prepare for the mask?
- Wear clothes that are easy to remove from your upper body. Thin strapped tops or underwear can be left in place if the straps can be off the shoulder. You will need to wear the same style top/ underwear for each treatment to reproduce the exact position you were in when the mask was made.
- The CT and treatment rooms can be cold. You are welcome to bring a small blanket/ cover for when you are lying down.
- Shave off beards or moustaches before you attend.
- Bring something to tie up any long hair.
- Please do not use hairspray the day your mask is made.
- Remove false eye lashes, eyebrows and hair pieces.
- Do not wear earrings or necklaces, remove nose or tongue piercings.
- Prosthetics and dentures may need to be removed for the procedure. Please wear these as normal to the appointment and discuss this with the scanning team.
- Please let the scan team know of any difficulty you may have lying flat on a CT couch.
You will be asked to lie flat on the radiotherapy CT scanner couch with your head, neck and body as straight as possible. You will need to have your shoulders in a relaxed neutral position, this can be hard when you are nervous, but the staff will reassure and advise you.
The position you are in when the mask is made is the position you will be in for radiotherapy treatment. It is important that you can maintain the position for 20 to 40 minutes. The radiographers will do all they can to achieve a comfortable position for you. The mask needs to fit securely in order to keep you still enough for accurate treatment. If the mask is uncomfortable, please let the radiographers know when they are making it. Sound can be exaggerated in the mask and normal noises can sound distorted, particularly while the radiographers are putting marks on the mask and positioning you for treatment.
How is the mask made?
Each mask is made from a thin sheet of thermoplastic. It comes as a flat sheet and shaped to cover the head and shoulders. Once you are lying on the CT couch, the flat thermoplastic sheet is placed into a warmed water bath for a few minutes until it is flexible.
Once flexible, the thermoplastic is carefully lifted out of the water bath and stretched over your head and shoulders then fixed to the treatment couch. The thermoplastic material feels warm and wet when the impression is taken. It is dried and smoothed to the contours of your shape. You are able to breathe normally.
Once the impression has set the mask can be lifted off and retains your shape.
This mask can be refitted each time you attend for radiotherapy.
What is a mouth bite?
It may be necessary for you to have a mouth bite made. This makes sure that your tongue and lower jaw are kept in the same position for each treatment. The mouth bite is made from dental putty and formed around your teeth. You will be able to breathe normally through your mouth or nose and it does not hurt. If you wear a complete set of dentures it may be more difficult to make the mouth bite. The dentures are usually removed, and your gums may not be able to keep the mouth bite securely in your mouth. The mouth bite will be made before the mask and the staff in the CT scanner will talk you through the process.
What is the radiotherapy planning scan?
Once the mask is made, as part of the same appointment, you will have a radiotherapy planning CT scan, or ‘planning scan’. The whole process takes around 30 to 40 minutes, but please allow an hour in the department.
The radiotherapy doctors (clinical oncologists) use the planning scan to draw where the radiotherapy is to be given. They also draw around important structures to avoid with radiotherapy or measure radiotherapy dose to. It is often necessary to have contrast for this CT scan to help them see the structures they need to outline. Contrast is a dye that is injected into a vein during the CT scan. The head and neck team will be able to advise you if this is required.
Pre-treatment telephone clinic appointment
Before treatment starts members of the head and neck team will call you to answer any questions you may have and discuss how they will support you;
- Advanced practice head and neck radiographer:
- This is an opportunity to ask questions about radiotherapy or chemotherapy before your treatment starts.
- The radiotherapy process and appointment schedule will be discussed.
- Skin and mouth care are discussed. Please read the skin and mouth care guide in this information leaflet.
- Review clinics will be discussed.
- For patients having chemotherapy, the schedule and process of chemotherapy concurrently with radiotherapy will be discussed. Side effects will have been discussed but can be discussed if needed, and any questions answered.
- Specialist dietitian:
- They will explain how the team will support you through treatment.
- Advice, guidance on diet and to record your weight.
- Specialist speech and language therapist:
- They will explain how the team will support you through treatment.
- Pre-treatment assessment, advice and guidance on swallowing, use of your voice, jaw exercises and, if relevant, stoma care.
Having radiotherapy treatment
- Radiotherapy is delivered on treatment unit called a linear accelerator (LA). You will see reference to the treatment unit where your treatment will be delivered on your radiotherapy appointment list, for example LA3. Usually, patients are in the LA for 15 to 20 minutes.
- Every treatment is the same. For each treatment, the radiographers will position you on the treatment couch and carefully fit your mask.
- They will position you for radiotherapy using lasers with positioning marks on your radiotherapy mask.
- The radiographers then leave the treatment room and go to the control area to prepare to deliver the radiotherapy. They will be watching you closely via closed circuit television. They can also speak to you via an intercom. If you need help, raise your arm. The machine can be switched off and the radiographers can return to the room to assist you.
- To prepare for the radiotherapy to be given, the radiographers will do a short scan every day to check you are in the correct position. There is no sensation while this scan takes place and you do not need an injection of contrast for this scan.
- There will be a pause while outside in the control area the radiographers are looking at the scan to check your position.
- Once they have confirmed the position for radiotherapy is optimal the radiotherapy treatment will be delivered.
- The treatment machine will not touch you and there is no sensation from the radiotherapy beams. The length of treatment delivery varies between patients depending on the area being treated, and is usually around four to nine minutes. The treatment team will be able to tell you how long the radiotherapy will take to deliver.
- Once the treatment is complete, the radiographers will come back into the treatment room to remove the mask and the treatment for that day is complete.
The Radiotherapy Department has regular fire alarm tests. If the alarm goes off while you are wearing the mask it is likely to be a routine test alarm. The treatment staff will let you out of the mask immediately in the unlikely event that the area must be evacuated.
Weekly radiotherapy clinic review appointments
Each week, through the course of your treatment, you will have a telephone call or face to face appointment in the radiotherapy on-treatment clinic. You will speak with or see the either a radiotherapy doctor or advanced practice radiographer. You will also speak to or see a specialist speech and language therapist, and dietitian in a separate appointment. Head and neck clinical nurse specialist support can also be accessed via these clinics. Please allow more time in the department on clinic days if you are being seen face to face.
This appointment is an opportunity to discuss treatment side effects and ask questions. Any medication you may need to help manage side effects will be prescribed.
Medication, mouthwashes and creams will be prescribed to help manage side effects. It is important to use these regularly, as prescribed, to get most benefit from them. Please avoid running out by having a list of medications ready for clinic so these can be prescribed. Plan ahead so you can request your prescription one day and collect it the next day. This can help avoid long waits at pharmacy. Try to avoid running out of medication.
If you take routine medication for other medical conditions these will need to be supplied via the normal route.
Driving to radiotherapy
Treatment side effects, especially tiredness, build up as your treatment progresses. You may feel able to drive yourself to your radiotherapy appointments in the first few weeks. You may prefer to make arrangement for a lift if needed and for towards the end of your treatment as the tiredness and other side effects increase.
During treatment you may also require medications that can make you feel slightly drowsy or sleepy. It is important that you do not drive or operate machinery while you are taking these medications.
If you require hospital transport, please ask radiotherapy reception for the transport contact number for your area.
After treatment completion
Once radiotherapy is completed you will be offered an appointment two weeks after the treatment is finished. At this appointment you will be seen or telephoned by the advanced practice radiographer, the speech and language therapist and the dietitian. The purpose of the appointment is to review your side effects and ensure they are being managed appropriately. Your weight will be recorded and if appropriate blood tests completed.
Approximately six weeks after radiotherapy is completed you will have an appointment to come to the joint head and neck clinic. You will see a specialty surgeon or oncology doctor at this appointment for follow up. You will also have the opportunity to see the clinical nurse specialist, speech and language therapist and the dietitian at this appointment.
Chemotherapy with radiotherapy
Chemotherapy is sometimes given alongside radiotherapy. If this recommended the Oncology team will discuss this with you. Chemotherapy is given in the Oncology Day Unit, level 2, Outpatients and is next door to the Radiotherapy Department, in Oncology. There are two main drugs we give alongside head and neck radiotherapy.
Cisplatin chemotherapy is delivered once a week or once every three weeks during radiotherapy. Additional written information about chemotherapy and cisplatin will be provided. Information is also available on the Macmillan website.
On chemotherapy days you will be admitted to hospital as a day case in the Oncology Day Unit for around five to six hours. You will be given your appointment time to attend the day unit for chemotherapy. Often these times are not confirmed until the pre-treatment appointment. Radiotherapy is given the same day as chemotherapy once the chemotherapy has finished. Once you have been discharged from the Oncology Day Unit, please book in at radiotherapy reception for radiotherapy treatment.
Cetuximab is a monoclonal antibody. Additional written information about cetuximab will be provided. Information is also available on the Macmillan website.
Cetuximab starts one week before radiotherapy. This infusion is called a ‘loading dose’. It is delivered on a Monday in the Oncology Day Unit. You will be in the day Unit for around three to four hours.
The following Monday the next treatment, or cycle, of cetuximab is given, with a slightly shorter infusion. Radiotherapy treatment starts after this infusion has finished. Please book in at radiotherapy reception as soon as you are discharged from the day unit. Cetuximab is then delivered once a week, on a Monday throughout radiotherapy. The infusion is always given before radiotherapy.
If you are concerned or have questions about these appointments, either call Jo Gemmill 01223 536330 or radiotherapy reception 01223 216634 for advice, or discuss this at your pre-treatment appointment.
All chemotherapy patients will need weekly blood tests. These are added to your radiotherapy treatment schedule.
Radiotherapy side effects
This information lists possible side effects when radiotherapy treatment is given to the head and neck area.
Side effects vary from person to person, depending on the area that is being treated and the amount of radiotherapy that is being given. These side effects will occur in the area being treated. Therefore, it is important to remember that not all the side effects discussed in this information will be relevant to the treatment that is planned for you. The team will discuss side effects relevant to your treatment before it starts.
Side effects of treatment tend to build slowly and tend to start to be noticeable in the second week of treatment. Side effects can fluctuate over the course of treatment and are worst in the last couple of weeks of treatment and for two to three weeks after treatment has finished. Side effects then start to subside, but healing tends to fluctuate and can take weeks to months.
The side effects of head and neck radiotherapy can be anticipated and are often significant.
What can I do to help reduce my side effects?
- We advise patients to stop smoking; If you smoke it is very important to stop smoking as soon as possible. The treatment side effects are worse, and the treatment does not work as well if you continue to smoke during radiotherapy treatment. Help to stop smoking can be reached via your GP service and local stop smoking services.
- Proactive management of side effects, maintaining nutrition and hydration is essential to keep you feeling as well as possible. The head and neck team will advise how to manage the side effects and prescribe any medication or mouthwashes required.
- Please follow the advice on skin care and mouth care in this information leaflet.
- Some patients find the side effects of head and neck radiotherapy difficult to cope with despite their best efforts to manage them. Occasionally patients are admitted to hospital to help manage side effects.
- If your side effects are not well managed and you need to be seen by the team on a day you are not scheduled for a review, please either call Jo Gemmill or let radiotherapy reception know when you book in for treatment, speak to the radiotherapy treatment team or call radiotherapy reception on 01223 216634.
- If your treatment appointment is in the afternoon and you need an unplanned review, please telephone and arrange to come in earlier.
- Please be aware that the team are likely to be in other clinics so there may be a wait to be reviewed on non-clinic days or you may see the on-call oncology doctor.
- If you need advice or are unwell in the evening or at the weekend please call the Acute Oncology Service on 01223 274224.
- Occasionally, patients can experience unusual side effects that are not expected or mentioned on this sheet. If you are in doubt, please ask a member of staff.
Early side effects
Radiotherapy side effects can be divided into early or acute and late or chronic side effects. Early side effects usually occur two to three weeks into the treatment and subside in the weeks following treatment completion. Late effects are defined as those occurring six months or more following your treatment.
Radiotherapy can cause hair loss (scalp or facial) if the hair is in the area of treatment. For most patients this only involves areas of facial hair and the back of the neck. The scalp area is not often treated.
Hair loss usually occurs about two to three weeks after treatment has commenced and can take a few months to re-grow following treatment completion. Hair in the treatment area tends to not grow back.
Should your treatment involve an area of scalp hair, you can continue to wash your hair gently using a mild baby shampoo. The hair should be gently towel dried and you should avoid, or use, a cool setting of a hair dryer while you are having your treatment. Avoid using perming or colouring products on your hair.
During radiotherapy the skin in the treatment area will gradually redden. This tends to start to build up from week 2 onwards. Skin in may become dry, itchy and sore. Towards the end of treatment the skin can sometimes break down and become ulcerated /moist.
The skin usually takes four to six weeks to heal after the treatment has finished, however it can remain slightly discoloured for some months after this.
Proactive skin care from the start of treatment can help to reduce problems later. The following advice will help prevent the surface of the skin being rubbed off and becoming sore.
This advice applies only to the area being treated. You can continue with your usual skin care regime away from the treated area.
It is advisable to follow the basic skin care advice from the start of radiotherapy and continue for several weeks after radiotherapy has finishes, until the skin changes have settled.
In the treatment area;
- Wash daily with a mild soap. Alternatively, a soap substitute such as Aqueous can be used to help to keep the skin moisturised.
- Avoid rubbing and gently pat the treated area dry.
- Apply a moisturiser to the skin twice daily, increasing frequency if required. It is advisable to use a moisturiser that does not contain sodium lauryl sulphate (SLS). Please note Aqueous cream does contain SLS and is not recommended as a leave-on moisturiser.
- Avoid using thick layers of thick cream. Allow at least two hours for cream to be absorbed before radiotherapy. Avoid an excessive residual layer of cream on the skin prior to treatment. If there appears to be an excess of cream on the skin gently remove before the treatment session.
- A thin layer of Vaseline can be applied to the lips if required (not before treatment).
- It is preferable to use an electric shaver rather than a wet razor.
- You can bath or shower as normal using lukewarm water but avoid perfumed shower gels and bubble baths on the skin.
- Do not use any other preparations on the skin such as cosmetics without checking with the team.
- Avoid using perfumes or after-shaves in the area of treatment.
- Avoid tight fitting clothing that may rub the treated skin.
- Do not apply tapes or adhesive bandages to the skin in the treated area, unless supplied by a member of the team.
- Do not use wax or hair removal creams or products.
- Do not apply hot water bottles, sun lamps, or cold compresses/ icepacks to the skin.
- Avoid the skin being exposed to the sun or strong winds.
- Avoid swimming in heavily chlorinated pools. Ensure you wash the area thoroughly in water after swimming.
- Avoid hydrotherapy, Jacuzzis, saunas and steam rooms during treatment and until the skin reaction has settled after treatment.
- The use of sun beds is not recommended during or after treatment.
- Stay well hydrated, maintain healthy nutrition and stop smoking.
Levels of skin reaction and action to be taken
There are three levels of radiotherapy skin reaction:
Erythema – Reddening of the skin in the treatment area.
This may include hair loss in the treatment area if the treatment beams fall near to hair on your head or facial hair.
If you experience erythema please follow the basic advice in preceding section.
Dry desquamation – Reddening of the skin with dry flaky areas which peel off from time to time.
If you experience dry desquamation you should increase the frequency of sparing applications of a moisturiser. You may find keeping your moisturiser in the fridge boosts its soothing action. Minimise friction to the area and allow air to the skin. Be extra vigilant when outside to protect the area from sun and wind. If the area itches or is sore ask the treatment team if your skin can be assessed by the head and neck team.
Moist desquamation – Breakdown of the skin often with oozing of a clear or yellow fluid from the skin.
This is a normal reaction to radiotherapy experienced by some patients. The reaction should be discussed with a member of the radiotherapy team and will be assessed if necessary. This reaction should heal two to three weeks after treatment finishes. It often is at its worst during the week after treatment. If you experience moist desquamation do not apply any cream to the moist areas unless specifically prescribed for broken skin. Keep applying other creams to the areas which are not broken. Ask the treatment team to assess the skin breakdown and/or phone a member of the head and neck team for review or advice.
If the skin does not heal after treatment, please contact the head and neck team.
Continue the above advice for three to four weeks following your treatment completion or until your reactions have subsided. Then return to your normal washing routine. If the skin continues to feel sore however, follow the advice for a further one to two weeks or until the soreness has resolved.
It is important to avoid exposure of the skin to sun, particularly in the first year after your radiotherapy treatment has finished. Use a high factor suncream lifelong as your skin will be sensitive to the sun. You should also wear a hat, with a brim, for protection.
If you enjoy swimming, you can return to this activity when your skin has healed. If the water causes irritation, then stop and try again after a couple of weeks.
You may notice that the skin in the treated area is more fragile for several months following treatment and the treated area of skin is darker in colour. This can take up to a year to resolve and sometimes does not resolve completely.
Before, during and after your treatment it is very important to notify a member of the team if you notice the following:
- excessive discharge from the treatment area
- discharge that is discoloured or has an offensive smell
- sloughing or excessive peeling of the skin in the area of treatment.
Sore mouth (oral mucositis causing pain, ulcers and bleeding)
Good mouth care is essential and helps to keep the mouth clean, moist and comfortable. It is also important to help look after your teeth. It is especially important to take good care of your mouth while you are receiving treatment and after treatment is complete.
Radiotherapy treatment given to the head and neck, results in inflammation and ulceration of the lining of the mouth and throat causing pain/ soreness, dry mouth and discomfort. These side effects are an expected side effect and tend to start seven to 14 days into the course of the treatment.
- You need to see a hospital dentist and we recommend seeing your local hygienist for a checkup before your mask and planning scan.
- Any dental treatment recommended should be undertaken before radiotherapy planning begins.
- All head and neck radiotherapy patients should use high fluoride (5000ppm) toothpaste and an alcohol-free fluoride mouthwash, lifelong. Please ask if you have not been prescribed these yet.
- Teeth should be cleaned twice daily with a soft, medium head toothbrush and high fluoride toothpaste. Avoid rinsing for 30 minutes after using the toothpaste. You can gently brush your tongue if not too painful.
- Store your toothbrush head up and allow to air dry. Change your toothbrush regularly.
- Dentures should be removed a minimum of twice a day, and/or after each meal cleaned with a toothbrush and rinsed with tap water. They should be soaked in your usual solution and left to air dry. They should be stored in water in a closed container overnight. It is recommended to leave dentures out as much as possible. It may not be possible to tolerate wearing your dentures towards the end of treatment and until your side effects have settled.
- During radiotherapy avoid dental interventions or treatment except in emergency circumstances. Please ask your radiotherapy team for advice.
- Do not use commercial mouthwashes.
- Stop smoking and drinking alcohol.
- Do not use dental floss when you are susceptible to infection or bleeding.
- Avoid eating physically hot and spicy foods/ drinks.
- Try eating softer foods which are easily chewed or swallowed.
- Rinse your mouth with warm water, saltwater or normal saline solution mouthwashes at least four times daily. The mouthwashes can be made up using one teaspoon of salt mixed with 900ml water.
- If your lips/ corner of your mouth become dry, cracked or sore, try yellow soft paraffin or water-soluble lubricant as a moisturiser for lips. Use sparingly – do not apply before radiotherapy treatment.
- Observe for white patches or creamy white areas. These could be an indication of infection such as thrush. This is very common and is easily treated.
- Brush tongue gently, if not sore, from back to front using a soft toothbrush, four times daily.
- Increase fluid intake, particularly water.
- Reduce caffeine intake.
- If your mouth is dry carry a bottle of water with you to sip from.
- Increase use of sauces and gravies with food.
- Consider use artificial saliva and sugar free chewing gum. People with their own teeth should avoid using Glandosane salivary spray.
- Ensure loose teeth, ill-fitting dentures or caries are assessed by your dentist.
During the weekly radiotherapy on treatment review clinic your mouth will be assessed by either a doctor or the advanced practice radiographer.
Mouth care after treatment
Following treatment, it is important that you continue to maintain good oral and dental hygiene. Radiotherapy treatment puts you at increased risk of dental decay if you do not take care of your teeth.
Radiotherapy weakens both the bone (including teeth) and the blood supply in the treatment area. In addition, saliva production, which helps to keep the mouth clean, is often reduced when salivary glands have been irradiated.
These factors can increase the risk of infection and decay inside your mouth. This can become particularly serious if the treated jawbone becomes affected. Occasionally, this can lead to osteonecrosis (permanent destruction of the bone).
In addition to good mouth and dental hygiene, it is important to keep regular six-monthly checkups with your dentist and hygienist. If you wear dentures, please have these checked regularly to ensure that they continue to fit well. Please note that following radiotherapy to the mandible (jawbone) any dental extractions will need to be discussed with, or performed by, a restorative dentist or under a maxillofacial team at the hospital.
Following treatment, your dentist will be able to undertake any routine work in your mouth. However, it is important that you attend the hospital clinic if you need to have any teeth removed from an area of your mouth that has previously been treated with radiotherapy.
Taste changes/ loss
Both your sense of smell and the taste buds in your mouth affect your ability to taste. Your taste buds also depend on a good amount of saliva to help you taste well. Treatment that involves your nose, taste buds and/or saliva glands can affect your sense of taste.
This can mean that certain foods will change in taste, sometimes lose their taste completely or taste unpleasant. This often improves over time (months) but can be a longer-term problem depending on both the treatment volume and the area treated. This can impact on appetite and enjoyment of oral intake. The dietetic team will advise you on how to try to manage this.
Radiotherapy to the head and neck can make saliva and secretions very thick, sticky, ropey and difficult to cough up and clear from the mouth and throat. The secretions tend to re-accumulate quickly after clearing them. The secretions can often be discoloured (yellow/ white). Often this is worse in the mornings when you wake up. Secretions can be a very difficult side effect to manage and varies from person to person.
It is also important to drink plenty of water as the secretions are less sticky if you are well hydrated. Secretions can be helped by rinsing your mouth out regularly with normal saline or salt-water rinses and/or difflam mouthwash. Keeping your environment humid and using gentle steam can loosen them and make the easier to cough up.
Although these secretions are a normal side effect of radiotherapy to the head and neck, they are very unpleasant and can be difficult to manage. Please contact the head and neck team to discuss this if secretions become problematic, particularly if the secretions are difficult to cough up. If you feel you are coughing up secretions from your chest, rather than from your throat, please contact the head and neck team, radiotherapy team or the Acute Oncology Service on 01223 274224.
These secretions tend to be at their worst in the last week of treatment and the two weeks following treatment. They then start to resolve. They can fluctuate in their volume and tenacity. Although this is an expected side effect, secretions can be debilitating and frustrating to manage.
Salivary glands are sensitive to radiotherapy. Radiotherapy can reduce salivary production as well and alter salivary consistency, causing a dry mouth. This can be a side effect in during treatment and in the long term after treatment completion. There is sometimes some recovery of salivary function after radiotherapy, but this is dependent on how much radiotherapy the salivary glands have received. Dose to salivary glands is minimised where possible to preserve salivary function.
Carrying a bottle of water to sip from, moistening foods and considering salivary replacement products can help manage a dry mouth. This can be discussed in clinic.
Difficulty swallowing (dysphagia)
Soreness in the mouth and throat caused by the radiotherapy can make eating and swallowing difficult. You will see a specialist dietitian and speech and language therapist weekly during treatment to advise you about diet and swallowing. It is extremely important to maintain a good diet and avoid losing weight during treatment. Eating softer, easier to chew and swallow food, with plenty of fluids/ sauces/ gravies helps to maintain a good diet. Avoiding hot and spicy foods and drinks helps reduce irritation and soreness in the mouth.
It may be necessary to provide mouth washes and medication to reduce soreness and pain. This will be discussed at your weekly review clinic appointment. However, if you are experiencing problems before your clinic appointment do not hesitate to let your treatment team know in the Radiotherapy Department and they will arrange for you to be reviewed. It is very important to notify a member of staff if the soreness is making it difficult to eat and drink.
If your larynx (voice box) is in the treatment area, your voice may become hoarse. You should limit trying to speak and use alternative methods of communication, such as writing. The speech and language therapy team will review and advise you. This side effect is temporary and should return to normal in the weeks following the end of your treatment. Occasionally, patients are left with a slight alteration to their voice tone or pitch.
Reduced hearing/ discomfort in the ear
Radiotherapy treatment can cause the wax in the ear to become stickier. This can block the ear and reduce hearing or cause discomfort. This can be treated and is usually temporary. Please let a member of staff know if you think this is happening.
This side effect can vary greatly from person to person. Tiredness generally increases throughout radiotherapy and may last for several months after treatment has finished. It is important to listen to your body and pace yourself accordingly. You may find that you need to rest during the day. Fatigue can fluctuate and tends to be its worst in the two weeks following treatment. You can obtain further written information about coping with lethargy/ tiredness by contacting Macmillan Cancer Support.
Late side effects
Late effects are defined as those occurring six months or more following your treatment.
Dental decay (caries)
A dryer mouth as a result of radiotherapy can increase the risk of dental decay inside the mouth. This is because in addition to moistening food, saliva also cleans the mouth and teeth. Please refer to the ‘mouth care after treatment’ section.
Once treatment is complete, and the side effects have subsided, it is important that you continue to clean your teeth at least twice daily. You should use Duraphat 5000 high fluoride toothpaste and a fluoride mouthwash lifelong.
Jaw muscle tightening (trismus)
The bone joints at either side of your face control the movement of your jaw. These are called the tempero-mandibular joints. These joints are in front of each ear and can be felt when you open and close your mouth. The large muscles surrounding these joints can become ‘stiff’ (fibrosed) if they are directly irradiated. This is known as trismus. Trismus can affect how widely and comfortably you are able to open your mouth.
This problem tends to develop over months. Exercises should be started as soon as treatment starts and can be necessary for some time after treatment has finished. If this side effect applies to you the speech and language therapy team will assess you and recommend exercises.
A few patients may experience a reduced blood supply to the jawbone following treatment to this area. This can occur if the jawbone is within the high-dose radiotherapy volume. It usually does not cause symptoms but can be a problem if there is an infection, which can lead to damage to the jawbone (osteoradionecrosis). There is a risk of osteoradionecrosis after removal of teeth (extraction), particularly when from the lower jaw.
There is a network of vessels and glands throughout your body, known as the lymphatic system. This system assists the body in its fight against infection, and with the drainage of fluid between the cells of the body.
Many of these lymph glands (also called lymph nodes) can be found in your neck. It is often necessary for these nodes to receive radiation as part of the treatment for head and neck cancer. Sometimes they have already been removed surgically. Radiotherapy to this area can reduce the drainage of the lymphatic system, leading to a fluid collection or swelling, particularly under the chin (dewlap oedema). In the months following radiotherapy treatment the swelling usually improves. However, it is unlikely to improve completely, particularly if you have had previous surgery to remove these nodes.
For a few patients it will be necessary for the pituitary gland to receive a dose of radiotherapy. This may affect the gland and its hormone production. This usually occurs a year or more after radiotherapy and is easily managed.
For some patients it may be necessary for the thyroid gland to receive a dose of radiotherapy. This can affect the gland and its hormone function. This usually happens a year or more after the radiotherapy has been given and can be easily managed.
Changes in vision are only a side effect if the area being treated is directly near the eye. This would be discussed with you fully before your treatment starts.
It is sometimes necessary for the spinal cord to receive a dose of radiotherapy if it is close to the area of cancer that is being treated. This can have a temporary effect on the cord. Lhermitte’s syndrome is caused by a temporary inflammation to the membrane that covers the cord. This inflammation can take four to six months to settle following treatment. Over this time you can experience some tingling or ‘pins and needles’ in your hands and feet. Very occasionally it can cause intermittent jerking of your limbs. Please contact the head and neck radiotherapy team if you have any questions regarding this.
Damage to spinal cord (myelitis)
In rare cases radiotherapy can cause permanent damage to the spinal cord. Any potential radiotherapy dose to the spinal cord is minimised, carefully measured and recorded. Please contact the head and neck radiotherapy team if you have any questions regarding this.
Risk of causing a stroke
Radiotherapy to the neck can increase the risk of having a stroke. Please contact the head and neck radiotherapy team if you have any questions regarding this.
Receiving radiation may cause a new cancer to grow in the future. Please contact the head and neck radiotherapy team if you have any questions regarding this.
All cancer patients are entitled to free prescriptions. Application forms (FP92A) can be collected from pharmacies, doctor's surgeries and in the oncology centre.
Stop smoking advice
We advise all patients to stop smoking. For information and support on smoking cessation contact your GP or local stop smoking service.
Privacy and dignity
Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and/or specialist one-to-one care is required.
We are smoke-free
Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151