Problems & Solutions

Being anxious about the diagnosis and treament of head neck cancer is experienced by every patient and their carers/family. Anxiety is particularly high after the diagnosis and before treatment starts. Also some patients remain very anxious during follow-up about the cancer returning.

All the staff appreciate the anxiety of patients and carers. They will support and answer questions.

When you have had a serious problem in the past, who have you turned to for support? Is that person still around to help you again?

Also at the Regional Head and Neck Unit we have Kelly Mawdsley who is an emotional support therapist. She provides specialist counselling and therapy.

Kellie Mawdsley
Emotional Support Therapist
Head & Neck Cancer
Aintree University Hospital
kellie.mawdsley@aintree.nhs.uk

Click here for the Patient information leaflet on Emotional Support Therapy.

If you wish for further information about this please don't hesitate to ask 'to speak to one of the H&N Clinical Nurse Specialists, or speak to the staff on the ward / out-patients.

Change of appearance is quite common with head and neck cancer and it treatment. Generally changes in appearance are quite mild even with radical surgery.

There are various ways we can help you with issues of appearance so please ask about:

• Advice
• Post-op scar management - Dermatix silicone gel, sheet clear or sheet fabric. These preparations help soften, flatten and smooth scars.(see Dermatix website)

Advice sheets should be available in clinic or ask your doctor / nurse about:

• Camoflague
• Revision surgery
• Support Therapy

Click here to go to the Skin Camouflage website>
Click here to go to the Let's Face it website>

Serious loss is something which we will all face at some time in our lives. It can seem difficult to know what is 'normal' and to understand how we or our families may respond when we face a loss. People often describe shock soon after the death of a loved one. They may feel numb, panicky, guilty, very weepy or unable to cry at all. Some people find it difficult to sleep and also have physical symptoms such as heart palpitations.

Coming to terms with a death is a very gradual process, which can take a considerable time.
There are many local hospital contacts and support organisations that can offer help and advice.

You can contact the Consultant, Clinical Nurse Specialist or other member of the team.
We have an Emotional Support Therapist who will be able to see you.

Other numbers include:

• The Family Support Service 0151 529 2578
• The Chaplaincy Office 0151 529 3195

The presence of cancer in the mouth and throat and also changes in function following treatment can make chewing more difficult. Sometimes it is more difficult to move the food around the mouth, sometimes there is a reduction in the ability to bite.

At the Regional Unit we have a specialist Consultant Restorative Dental Surgeon (Mr Butterworth). You may need to be seen by Mr Butterworth before treatment. Sometimes this is simple care in conjunction with your dentist, occasionally it is new dentures and bridges and much less frequently it is implants (screw in teeth). The Consultant in charge of your care will inform you if it is needed as part of your treatment.

Please raise the issue of chewing at the out-patient or ward visit if you have concerns. If needs be the team will arrange for you to see Mr Butterworth again.

Many patients who experience chewing and eating difficulties find that it helpful to eat very soft foods such as ice cream and blended foods.  Check out the Recipes section of our forum, where you will find several user-contributed recipes.  The Mouth Cancer Foundation has also produced a very helpful Cookbook with specific recipes for patients with eating difficulties.

Ask about 'Gelclair' if you mouth is sore as this gives a protective film and helps reduce irritation. Click here to find out more about Gelclair.

Also if you have difficulty opening your mouth ask about 'Therabite'.

Other products include:

Ora-light - oral motoer exercise system (Kapitex). There are instuments like spoons that can help give exercise to stimulat the lips, the tongue tip, the main part of the tongue and the back of the tongue. Please ask our Speech and Language Therapist if you would like more information.

Kapitex also produce "Chewy tubes" which are aimed at promoting better biting and chewing skills. It might be that youe chewing difficulties are very complex so please ask for advice as it might be that other ways are more suitable.

Some of the medication that you take in the treatment of head and neck cancer can tend to make you go to the toliet less frequently than usual. There are plenty of simple ways to tackle this and the nursing staff will be able to advise you.

If you have a problem with constipation please don't feel embarassed to mention it when you attend the ward or out-patient clinic. To prevent or manage constipation early is much better than waiting.

For patients with constipation, a good over the counter remedy is Senokot, but if the problem persists for more than five days, we would recommend you visit your GP or inform the nurse at your next out-patient clinic.

Please note that, where possible, codeine base painkillers should be avoided as these are most likely to lead to constipation.

Coughing can be a nuisance especially following surgery. Food can tend to go down the wrong way to start with after major surgery. 

If you are feeling unwell as well as coughing, we would suggest that you visit your GP as you may well have a bacterial infection which needs antibiotics.  A chest ray or CT scan of the chest is sometimes helpful and can be arranged through clinic. 

A swallow test can be performed (called a video-fluoroscopy) to better assess any swallowing problems that might lead to a cough.

The Speech and Language Therapists have a considerable amout of experience is help with any problems in swallowing and they will see you before and after treatment.

Depression or having low mood is a natural reaction to cancer. Depression is not uncommon and for some patients is something that carries on through treatment and beyond. Sometimes it is hard to realise just how low your mood is and other might tell you.

If you feel depressed or have a history of depression please speak with a member of the team.

There are several ways we would wish to try and help and support you, not necessarily by medication but it may be that you would wish to see our Emotional Support Therapist.
Please ask when you are on the ward or at out-patients or speak directly to our Clinical Nurse Specilaist who can book your appointment.

Dry mouth is very common following radiotherapy to the mouth and throat. It can make it more difficult to chew, swallow and speak. A dry mouth makes keeping your teeth and mouth clean much more difficult.

There are several things you can try such as artifical saliva - pastilles to suck or a spray.  Patients preference differs so you might want to try several.. Some patients find a bottle of water the best solution..

Please be very very careful about your teeth. Saliva protects the teeth and if you have sugary drinks the teeth will rot.

Please discuss the issue of dry mouth wth your own dentist, with your Clinical Nurse Specialist  or with Mr Butterworth, our specialist Consultant Restorative Dental Surgeon can advise you and it might be that you should see our hygienist.  

Some of the recommended products for dry mouth include:

• Oralieve spray (effective for up to 3 hours) and Oralieve mouth gel (effective for up to 6 hours). [Both available only on prescription]  

• Oralieve also offer a toothpaste and lip balm with the ingredients to help with the dry mouth,  but  these need to be purchased.

• Oramoist mouth-moistening spray and lozenges' by Periproducts

• A.S Saliva Orthana 50ml spray (with fluoride, PH neutral) by AS Pharma

• A.S Saliva Orthana Mint mouth lozenges 2 X 15 pack by AS Pharma

• Biotene Oral Gel

  A booklet produced by Macmillan called “Managing the Late Effects of Head & Neck Cancer Treatment” (pages 20/21) provides a wider range of products that patients may find useful.

Facial swelling is common after surgery. It normally takes a week ar so to go down. The amount of swelling is variable and depends on how much surgery is required. It is worse if you are unfortunate enough to develop a wound infection or have radiotherapy. This is because the small drainage channels (lymph) also get blocked (Lymphoedema). In this situation the swelling is often worse first thing in the morning and goes down somewhat as you stand and move around.

Although it can take time it is usual for lymphoedema to settle by one year. There are lymphoedema services so if in doubt please ask.

If the swelling has still not settled down after three months post treatment this may be a symptom of Lymphoedema.  Please get in touch with our Head & Neck Clinical Nurse Specialists) to arrange a referrral to a Lymphoedema Service.

This can be a major problem for some patients. The fear that the cancer is going to come back is felt by all patients but for some it becomes a real source of anxiety and distress. The fear of recurrence does not necessarily deminish with time. If you are fearful about the cancer coming back we would like to talk this over with you and if you want your family / carers. Please tell us when you are on the ward or in out-patients.

It might be helpful for you to see our Emotional Support Therapist.

'The fear of recurrence patient information leaflet was written by Jess Silva Trainee Clinical Psychologist, Jim Anderson Emotional Support Therapist, Dominic Bray Consultant Clinical Psychologist, and Simon Rogers Consultant Surgeon. We also acknowledge the advice of the Head and Neck Patients and Carers Support Group. Aintree University Hospital hold the intellectual property and copyright for the fear of recurrence patient information leaflet on this website'.

If you would like to read our patient support leaflet on fear of recurrence click the preview image below.

The vast majory of patients find that there is a 'cost' to cancer treatment. The cost of transport to the hospital, the cost of parking, the cost of prescriptions, cost of changing your life style. Also income can be considerably reduced. At times when you feel vulnerable and anxious, money worries can add to that strain. Remember though that help is always available.

Free prescriptions for patients affected by cancer now available

From 1st April 09 cancer patients in England have been eligible for free prescriptions. All cancer patietns undergoing treatment for cancer, the effects of cancer, or the effects of cancer treatment can now apply for exemption certificates from their Clinical Nurse Specialist, Hospital Consultant or GP.

The Clinical Nurse Specialists will be able to direct you to financial and benefit support services in your local area.

There is a benefit officer in Aintree who is available via the Macmillan Cancer information centre. Call 0151 529 4742 to arrange an appointment.

You might be able to claim a small grant from Macmillan Cancer Support. Infomation about this is avaialble from the wards, clinics and again from the Clinical Nurse Specialists. You can also visit the Macmillan Cancer Support website or ring on 0800 500 800.

Please do not be afraid to ask about this as help is available.

A recent study at Aintree University Hospital has shown that approximately 40-50% of patients report a change in their hearing following chemo-radiation therapy. In general this change is due to damage in the inner ear (cochlear) and the hearing loss is likely to be permanent.

In some cases this change can be due to a middle ear problem (usually a build-up of fluid behind the eardrum) and this may resolve over time and on occasion it may be treated.

In the event of either type hearing loss you may find hearing aids beneficial. Your consultant or GP will be able to refer you to your local hearing aid provider for these to be fitted.

Tinnitus may be experienced by approx. 25% of individuals following treatment. Tinnitus is the perception of noises in the ears and/or head which have no external source.  It is not an illness or a disease but a symptom generated within the hearing system and brain.  Some people find the tinnitus intrusive and annoying. Over time most people habituate/accept the tinnitus however if your tinnitus is particularly annoying your consultant or GP can refer you onto Audiology for additional help and support. Using low level sounds and relaxation techniques may help.

The British Tinnitus Association has additional information at tinnitus.org.uk

0800 018 0527

www.takeontinnitus.co.uk           helpline@tinnitus.org.uk

The 'Patient and Carer Support Group' is a charitable organisation run by patients and carers based in Merseyside and surrounding areas providing support via support group meetings and online information.

For dates, and more information about the Head and Neck Cancer (HaNC) support group meetings, please check our Calendar or visit the HaNC Facebook page.

Lymphoedema is swelling of the tissues. It is caused by problems in the way the tissue drain fluid. It is most likely to happen after surgery in patients who have had previous surgery, those who have an infection in the neck following their operation, and those who have had radiotherapy. The tissues are swollen with soft pitting oedema (indentation when pressed) and can sometimes be red and warm without the presence of infection.

The swelling can take a year to settle and is particularly slow to get better if the surgery is followed by radiotherapy. The swelling is usually worse first thing in the morning because of lying flat over night. During the day the swelling goes down by the effect of gravity.

There are techniques to try and break down the fibrous reaction by using connective tissue release exercise and simple lymphatic massage. Also sleeping more upright helps to aid drainage. On occasion a compression garment can be fitted to the head and neck region at night to help promote drainage.

There is a lymphoedema service and often this is available through the local palliative care team (Macmillian Clinical Specialist in Lymphoedema).

Please get in touch with the Clinical Nurse Specialists in Head and Neck if you want more information or referrral to a Lymphoedema Service.

Osteoradionecrosis (ORN) is a rare and serious late effect of radiotherapy. The radiotherapy may cause changes to the jawbone. Sometimes, this may lead to tissue in the jawbone dying.  

Risk Factors

Certain factors can increase the risk of ORN, including

• smoking
• wearing poorly-fitting dentures
• having an infection
• certain dental treatments

A good mouth care routine will considerably reduce your risk of ORN. If you feel any changes in mouth, for example, roughness on your gum, swelling, loose teeth or numbness you should see your dentist as soon as possible (even if you have no natural teeth).

Treatment

Treatment of ORN may involve medications, painkillers and sometimes surgery to remove the affected tissue. ORN can be difficult to treat effectively, so it is important to visit your dentist regularly to ensure an early pick of any ORN issues.

More information about ORN can be found in this useful brochure produced by Clatterbridge Cancer Centre.

Head and neck cancer is painful. Usually surgery reduces the amount of pain. There are many different painkillers available to you sometimes used individually, often in combination. Occasionally there are otherways to help patients cope with pain.

Please bring the issue of pain - its nature, severity and frequency to a member of the team. It might be worth keeping a diary of the pain as this could help plan the best treatment.

Further Information.

Macmillan Cancer Support have extensive information on a wide range of issues relating to cancer on their website - click on the logo for their 'Controlling Cancer Pain' webpage.

Click here for the 'Macmillan Cancer Support Homepage'

Click here for the Pain Speak Cancer Pain website. This website (Pain Speak) is a patient education campaign launched by the Breakthrough Cancer Pain Coalition

Patients with advanced head and neck cancer can experience significant difficulties in swallowing as a consequence of the cancer or as a result of treatment. Difficulty swallowing (dysphagia) is more common in cancer of the back of the mouth and throat and in patients having radical treatment such as chemoradiotherapy or surgery followed by radiotherapy.

There are various ways to help give patients the extra nutrition needed to get though treatment. Percutaneous endoscopic gastrostomy (PEG) tubes we first described by Gauderer in 1980 and are a tube placed in to the tummy under local anaesthetic with sedation (please see the patient information leaflet). The other way of getting the tube into the tummy is using xrays to guide its placement radiologically inserted gastrostomy (RIG).

PEGS are usually temporary and are moved between 6 to 12 months following treatment. In the Unit only 8% of patients treated by primary surgery for oral and oropharyngeal cancer had a long-term PEG. The major PEG related problems are not those of discomfort, leakage or blockage, but interference with family life, intimate relationships, social activities, and hobbies. More can be done to counsel and support patients with long-term PEG placement. Please ask for additional information.

Click on the preview below to download an information leaflet on patient nutrition by Rachel Skelly, the Senior Head and Neck Dietician.

Patients often report various changes to their skin as a consequence of radiotherapy.  These symptoms include; redness of the skin, soreness/pain, itching, hotness, tenderness, throbbing, flaking, bumpy, tightness. This reaction is termed radiationdermatitis.  These skin changes range from mild redness to dry or moist superficial ulceration similar to very bad sun burn.

Various treatments have been suggested including aloe vera, hyaluronate cream, corticosteroids, antimicrobials, and dressings. However, washing with a mild soap or moisturising cream (eg E45 wash or moisturising lotion) is still considered very effective way to calm the skin and increase moisture.

Further information about the side effects of head & neck radiotherapy can found at Cancer Research UK.

Reduced saliva is very common following radiotherapy to the mouth and throat. It can make it more difficult to chew, swallow and speak. Very occasionally patients feel that they have too much saliva.

A dry mouth makes keeping your teeth and mouth clean much more difficult. There are several things you can try suich as artifical saliva - pastilles to suck or a spray. Patients preference differs so you might want to try several - just ask. Some patients find a bottle of water the best solution. There are tablets you can take that try to make your body make more saliva but these are not used very often.

Please be very very careful about your teeth. Saliva protects the teeth and if you have sugary drinks the teeth will rot.

Please discuss the issue of dry mouth wth your dentist. Our Specialist Consultant Restorative Dentist can advise you and it might be that you should see our hygenist.

Ask about 'Oramoist', 'Saliva Orthana', and Glandosane (this is acidic and should be used with caution if you have teeth).

Changes in your body image and your thoughts about your body after head and neck cancer is only natural. It can also affect others, even those most close to you.

It is a difficult issue to talk about and we can organise specilaist referral for advice. Please just ask. Also Kellie Mawdsley our Emotional Support Therapist can discuss things with you and of course this will be confidential. A meeting with Kellie can be arranged through the nurses on the ward or clinic.

As part of the treatment of head and neck cancer surgery or radiotherapy to the neck is required. As a result for some patients there might be difficulty lifting the arm up, and doing such every day tasks as combing the hair. The reduced shoulder movement can also be accompanied by pain.

As part of you care you would have most likely met with our Senior Physiotherapist. You should have excercises.

If shoulder problems do not settle following treatment please bring this to the attention fo the team when you are on the ard or at out-patients.

A sore mouth (or Mucositis when your mouth or gut is sore and inflamed) is a common side effect of chemotherapy and radiotherapy for cancer. It can be very unpleasant, but usually stops in a few weeks.   

More information about Muscositis can be found at the NHS website.  

If the soreness does not settle over a few weeks, patients look to book an earlier clinic review.  Please get in touch with the Head & Neck Clinical Nurse Specialists to arrange this.

Communication can be affected following surgery and radiotherapy treatment. This can take the form of changes in the clarity of speech and the quality of the voice. Certain situations can be more difficult than others, such as using the phone. Your Speech and language Therapist will be able to assess your communication and offer advice and therapy to help you.

Swallowing function can be affected following surgery and radiotherapy treatment. Swallowing is a complex mechanism that can breakdown in many ways. The degree to which it is affected depends on where your surgery is and whether you have additional treatments such as radiotherapy. The Speech and language Therapist will meet you at the time of your surgery and assess any difficulties and offer techniques that will help you through your treatment.

Kapitex produce the Kapi-cup, Dysphagia cup, Provale cup, Maroon Spoon, Novo cup and these might be helpful to you. Please ask for advice.

Problems with taste are common following radiotherapy to the mouth as it damages the taste buds. Whilst never returning fully back to normal, some recovery of taste function can be expected over time although this can take up to a year. Whilst chemotherapy can also interfere with taste function, this is largely reversible and tends to return in a matter of months.

Patients can often be tempted to eat/drink sugary things in an attempt to have some taste sensation - this is to be avoided as this can be extremely damaging to the teeth.

Click here to find out about teeth problems>

Teeth are extremely important for patients in many ways but unfortunately can easily be overlooked by patients and clinicians during treatment for head and neck cancer. Fortunately, at Aintree we have a well developed team and we are making every effort to ensure that patient's teeth are not overlooked during treatment.

Dental problems are common in patients with head and neck cancer and it is important that a full oral screening is undertaken prior to cancer surgery. It is mandatory that patients are screened prior to head and neck radiotherapy.

Below, you can download a Dental Advice Leaflet for use both during and after radiotherapy.

Here are the answers to some common questions:

Why do I need a dental checkup before my cancer surgery?

It is important that any dental problems are discovered prior to treatment and an appropriate 'plan' produced to help the doctors treating your cancer. This may mean that any teeth which are badly decayed or are likely to cause you problems in future are taken out at the same time as your operation or before you have radiotherapy. Sometimes cancer surgery will mean that you are not as able to open your mouth wide after treatment making dental treatment very difficult afterwards. In such cases, some back molar teeth may need to be taken out to help you and your dentist in future.

Can my own dentist treat me after my cancer treatment?

Yes! - there is generally no problem with you receiving normal dental treatment after your cancer treatment. In fact it is really important that you see a dentist every 3 to 6 months after your treatment to help pick up any future dental problems early. I f you have had radiotherapy though, we recommend that your dentist does not take any of your teeth out as there can be problems with your jaw healing afterwards. These extractions should be carried out by a hospital-based Oral/dental surgeon who is experienced in such circumstances.

Will I need all my teeth out before treatment?

The vast majority of patients will not need all their teeth removing although there will be some whose teeth are in such a poor state that they should be removed. The dentist or consultant who assesses you will be able to advise you whether any teeth should be removed or treated and will be able to explain why.

How does radiotherapy affect my teeth?

Radiotherapy itself does not physically affect the structure of the tooth itself but the effects of radiotherapy on the mouth make it more likely that your teeth will decay. Radiotherapy often produces a dry mouth as it damages the salivary glands. This reduces the amount of saliva in your mouth. Saliva is responsible for 'washing' your teeth and protecting them from decay. If you are not careful with what you eat and drink then your teeth can rot very quickly. It is very important that you do not eat sugary foods or have sugar in your drinks. If you are unsure what things to eat/drink then please ask your dentist or clinical nurse specialist.

Tiredness is often mentioned as a problem for patients in the first 6 to 12 months following treatment. It is relatively common and tends to improve with time.

For more information on tiredness / fatigue, click here for a very informative Macmillan webpage on the subject, what causes it and how to cope with it.

If you have had radiotherapy, it is recommended that patients used a specialist toothpaste, such as Colgate’s “Duraphat ® 5000”.   This is a toothpaste that contains a higher level of fluoride than ordinary toothpastes, as clinical studies indicate that certain people who are at a higher risk of tooth decay can derive additional benefits from daily use of “Duraphat ® 5000”..

Please note that “Duraphat ® 5000” is only obtainable on dental prescription and that you should visit your dentist to get hold of such a prescription.  

Some patients who suffer from particularly dry mouths report that Duraphat can lead to a slight stinging sensation.   In such instances, patients are advised to use Duraphat for their morning cleaning routine, but at night to use Oralieve® Ultra Mild Toothpaste, which is a mint flavoured toothpaste that is designed specially for dry mouths. 

Vomiting is usually a problem in the early post-treatment phase. It is uncommon as a long-term issue. There are very good medications that are available to help so please make the team aware if you have this symptom.