Care and mobility considerations

• Treatment of primary disease that is not advanced
• Eating and Swallowing
• Speech
• Advanced or recurrent lip, mouth and oropharyngeal cancer
• Care
• Mobility
• Psychological Problems

Outpatient treatments for this condition are unlikely to take more than 3 months to complete. The main disabling effects of this condition are likely to arise from the enduring effects of treatment on function of the mouth, particularly surgery.

Treatment of primary disease that is not advanced

Minimal enduring disabling effects would be expected. However when a person has had major surgery to the mouth or lip there may be residual disabling effects. In these cases evidence of ongoing problems and needs should be available from the Head and Neck clinical nurse specialist or speech therapist. Such problems may include:

• Difficulties with speech
• Dribbling/difficulty eating
• Difficulty swallowing
• Disfigurement
• Mental health problems

Eating and Swallowing

If a large area around the mouth has been reconstructed especially using free flaps from the arm or leg for example the new reconstructed area will be numb or ‘insensate’. Numbness around the mouth has a major impact on function. Activities such as eating and drinking will be very difficult. If the area around the mouth is numb people are unable to recognise the presence of food in the mouth, and to manipulate it for an effective and safe swallow. If the tongue (all or part) has been removed and reconstructed, it will be difficult to prepare food into a bolus or ball for normal swallowing and also difficult to propel the bolus of food to the back of the throat. A delay in triggering the swallow reflex may also occur, and in some people there may a risk of aspirating or inhaling food into the airway. This is very common immediately after the operation but can be an enduring problem.

Some people may be able to learn safer swallow techniques; for example, altering of their head posture during swallowing, to protect the airway. Others may need supervision when eating because of ongoing aspiration.

Other problems with eating and drinking include diminished lip seal following surgical intervention. This results in the drooling of food and fluid from the mouth (made worse by the fact that the lower lip is likely to be numb). Pocketing of food in the cheek areas may also occur, and reduced range of movement of the tongue can make it extremely difficult to retrieve food and fluid from around the mouth using the tongue. If part of the hard palate has been removed, food and fluid may be ejected into the nasal cavity.

Speech

Communication may also be a major problem, depending on the extent of the surgery, the reconstruction, and the structures involved. Communication difficulties may arise as a result of the range and speed of tongue movement, degree of lip closure and soft palate function. Patients who have had a dental clearance may have an even further reduced repertoire of sounds. This loss of ability to communicate can be devastating to head and neck cancer patients; resulting in frustration, social isolation and depression.

Advanced or recurrent lip, mouth and oropharyngeal cancer

This group are likely to have disabling effects from both the disease and its treatment, symptoms of disease may include:

• Ulceration in the mouth
• pain in the mouth that does not go away
• lump in the lip, mouth or throat
• pain on chewing or swallowing
• difficulty chewing or swallowing
• bleeding in the mouth
• numbness in the mouth
• loose teeth
• difficulty opening the mouth
• speech difficulty
• bad breath (halitosis)

The following may be symptoms of advanced disease:

• a lump in the neck
• loss of weight
• a large tumour may cause difficulty breathing

They may in addition have any of the side effects of previous treatment, the most disabling of these include:

• Pain
• Dental caries – widespread and severe resulting in loss of teeth
• Osteonecrosis – literally means bone death, this may affect the upper or lower jaw, and the symptoms are pain, loose teeth or numbness.
• Trismus – inability to open the jaw, usually because of pain. This can also be caused by scarring and fibrosis of the muscles of mastication (chewing), causing restricted mobility of the lower jaw. This may be due to radiotherapy, surgery, or tumour invasion. Some people may require use of mechanical devices to stretch the jaws, and this should be used frequently throughout the day (approximately seven 15 minute sessions per day). Some patients can only open their mouth a minimal amount (i.e. a few millimetres) and may be reliant on gastrostomy feeding or liquid diet. Oral hygiene may also be a problem, and trismus can also impact on communication.

Care

There may be ongoing problems with activities of daily living related to previous surgical treatment of disease, recent surgical treatment or advanced disease. These may include:

• Disfigurement
• Difficulty eating, including dribbling
• Difficulty swallowing
• Difficulty with speech
• They may need help cleaning and inserting and removing any prosthesis worn or mouth care. Dentures and obturators (a prosthesis that occludes the opening in the roof of the mouth) become coated in plaque and food debris, and can harbour infection. They must be cleaned frequently and meticulously using a soft brush and water. This must be done after every meal and when oral care is performed. Rinsing and soaking alone are not sufficient to remove plaque and debris effectively. Someone else will have to do this if there are any disabilities affecting hand movement or dexterity.
• Food preparation may be more onerous if a special diet is required.
• Supervision to help with choking/aspirating food at meal times.
• General weakness because of weight loss.
• Shoulder dysfunction – loss of shoulder function because of damage to the accessory nerve is likely to have a significant impact on activities of daily living if both shoulders are affected. These will include washing and brushing the hair and dressing because of restricted movement of both upper limbs. Any activity involving raising the arms above shoulder level will be restricted. Typical activities affected would include hanging a coat up on a coat hook, reaching up to kitchen wall cupboards or high shelves.

Changes in the ability to eat and drink in a socially acceptable fashion are a difficult issue. People who feel they are unable to eat in company because of such difficulties, may become socially isolated and stop going out at all. Head and neck cancer is very visible and the consequences of this can be devastating. Treatments for head and neck cancers can result in permanent, visible mutilation which is difficult to disguise. People with such disabilities are likely to fear isolation and rejection, be concerned about the reactions of others and may become socially isolated, depressed and anxious.

Mobility

Mobility is not likely to be affected by this condition except where there is severe weight loss - general debility and fatigue may reduce mobility. Free flaps taken from the hip or lower leg do not have a long term effect on mobility although the donor site may be sore for a few months.

Psychological Problems

Mental health conditions such as depression can occur as a result of treatment of any type of cancer. Cancer of the mouth is especially challenging as it may involve disfigurement, difficulty eating and difficulty communicating. Social isolation is a common problem. Mental health conditions may cause additional needs and problems with activities of daily living.

Psychological effects

Amended November 2008