Care and mobility considerations
- Speech and people who have had a Partial Laryngectomy
- Speech and people who have had a Subtotal Laryngectomy
- Speech and people who have had a total laryngectomy
- Caring for a tracheostomy
- Mobility
- Swallowing and diet
- Musculoskeletal problems
- Psychological Effects
Localised disease
Most treatments for laryngeal cancer last less than 3 months. For example radiotherapy and recovery or recovery from surgery. The exception to this is chemotherapy when it is given by itself over 6 cycles. If chemotherapy alone is being given, this treatment is likely to be palliative rather than curative. Side effects related to this treatment that result in needs during the first cycles are only likely to get worse through the treatment, a time limited award may be appropriate to cover this period. Rarely there may be the enduring side effects of chemotherapy treatment. Rarely there may be ongoing difficulties with swallowing which require special feeding ranging from soft diet to gastrostomy feeding.
Most people with laryngeal cancer are likely to be mobile and self caring at 3 months post treatment, if needs are present they are likely to be related to:
- the ability to speak
- having a tracheostomy
These difficulties are described in detail. The best source of evidence for assessment of needs will be the speech and language therapist who has most recently treated the claimant.
Speech and people who have had a Partial Laryngectomy
A person who has had this treatment will not have a permanent tracheostomy and will be able to speak with the remains of their larynx; it may take several months to become confident speaking to strangers. Their voice is likely to be weaker and hoarser than before. Likely difficulties include tiring of the voice when speaking for long periods and some difficulty being heard in noisy environments such as pubs, parties and shops. This is likely to be a significant problem for people who need their voices at work e.g. teachers, actors. Rarely tongue movement which makes many of the sounds of speech may be affected by treatment – this is likely to leave a person with a speech impediment as well as a weak voice. This often responds well to speech therapy but there may be a long period during which speech is unintelligible to strangers and confidence is lost.
There may be problems with swallowing in the months after surgery; this may occasionally involve aspirating or accidentally breathing in or choking on food whilst swallowing. Often this problem improves with time and patients will be taught techniques to enable safer swallowing. If this problem is persistent it is likely to be a cause of embarrassment and may lead to social isolation. If help or supervision is required because of aspiration at mealtimes this is a care need. Aspiration is likely to be persistent if it is still a problem 12 months after surgery. Should the problem result in frequent difficulties or recurrent chest infections then in consultation with the patient and their family, further treatment in the form of a total laryngectomy may be offered.
Speech and people who have had a Subtotal Laryngectomy
After this surgery part of the larynx remains which enables a person to speak with an altered quiet hoarse voice. It may take months to become confident speaking to strangers. A tracheostomy will be in place and needs to be cared for.
This may be temporary but as breathing becomes more confident may be removed. Likely difficulties include tiring or fatiguing of the voice when speaking for long periods and some difficulty being heard in noisy environments such as pubs, parties and shops. This is likely to be a significant problem for people who need their voices at work e.g. teachers, actors. Rarely, tongue movement which makes many of the sounds of speech may be affected by treatment – this is likely to leave a person with a speech impediment as well as a weak voice. This often responds well to speech therapy but there may be a long period during which speech is difficult or unintelligible to strangers and confidence is lost.
There may be problems with swallowing in the months after surgery; this may involve aspirating or accidentally breathing in food whilst swallowing. Often this problem improves with time and there are techniques to enable safer swallowing which can be learnt. If this problem is persistent it is likely to be a cause of embarrassment and may lead to social isolation. If help or supervision is required because of aspiration at mealtimes this is a care need. Aspiration is likely to be persistent if it is still a problem 12 months after surgery.
Speech and people who have had a total laryngectomy
A person who has their whole larynx removed is called a total laryngectomee. They have no larynx at all to speak with and will need to learn to speak again. There are several ways of speaking without a voice box:
- Oesophageal speech – a person swallows air and speaks (vocalises) by burping it back out again using resonance in the back of the throat (the pharynx) to make sounds. They may manage one word at a time within 6 weeks and be speaking in short sentences (3 – 4 words) within 6 months. Often even people who speak really well using the technique speak more slowly than normal. The length of each sentence will be dependent upon the amount of air “burped back”. Continued improvement in speech is likely for the first year. This type of speech is tiring at first and sounds very different to normal speech; it may be difficult for strangers to understand. Practical problems include making themselves heard and understood speaking over the telephone and in noisy environments - particularly to strangers. Psychological problems may develop because of the inability to express emotion through the voice by moderating pitch or speak for long enough to express feelings or needs. It is possible to develop good speech using this technique but this is the exception rather than the rule, social isolation is common.
- Speech Valves – there are various types of one way valves which connect the oesophagus to the trachea. The sound is the same as oesophageal speech but the air doesn’t have to be swallowed it comes through the one-way valve from the trachea to the oesophagus from the lungs. The hole is called a tracheo-oesophageal puncture (TEP). Mostly someone using one of these will have to close their tracheostomy by putting a finger over it every time they want to speak but some of them are ‘hands free’. The names of the valves are:
- Blom-Singer
- Provox
- Groningen
Problems are common with these valves; some people will not manage with them and have to use oesophageal speech or other speech aid. Common problems include -:
- Leakage through the valve of fluid into the trachea and lungs – this causes coughing.
- Candida infection around the valve –this is the main cause of leakage, regular anti-fungal drugs may be taken to control it.
- Leakage of the valve at the end of its life – they last around 6 months – the valve needs to be replaced usually at the hospital. When this occurs there will be problems including coughing and inability to speak until valve is changed.
- Dislodged valve – the valve may be inhaled rather than just falling out. Foreign bodies in the lung can cause severe ‘aspiration’ pneumonia if not removed straight away and the hole for the valve can close within a few minutes of dislodging meaning further surgery to put a new one in or adopting a new technique for speech.
Some of these valve problems can be minimised or reduced if the patient or their relative can learn how to replace the valve themselves but not everyone can do this and periods of coughing, loss of speech and trips to the hospital may be a real burden.
The effort of speaking with one of these is less than for oesophageal speech and the voice achieved can be louder. It takes time and practice to develop good speech using a valve. The disadvantages are that saliva can leak into the trachea and lungs through the valve and they require more care and attention in terms of keeping them clean through the day. Under normal circumstances the valve needs cleaning twice a day with a special brush. More frequent cleaning is required if the person has a cough or a cold. When the valve blocks a person cannot speak, this may happen regularly. Speech is usually possible 6-8 weeks after surgery and improves over the first year.
This type of voice sounds very different to normal speech; it may be difficult for strangers to understand. Practical problems include making themselves understood to strangers and speaking over the telephone. Having to place a finger over the stoma in the neck to speak draws other people’s attention to the neck and can make a person feel more abnormal and self conscious. Psychological problems may develop because of the inability to express emotion through the voice by moderating pitch or speak for long enough to express feelings or needs. It is possible to develop good speech using this technique but not everyone can do this, social isolation is common.
- Electronic larynx - this is an electronic vibrating device which is held against the neck to enable speech. It can take up to a year to be able to use the device well enough to make strangers understand and the voice sounds mechanical. Practical problems include making themselves understood to strangers and speaking over the telephone. Psychological problems may develop because of the inability to express emotion through the voice by moderating pitch or speak for long enough to express feelings or needs. Whispering is not possible either. As one hand has to hold the device for speech, only one hand is free during speech. This makes it impossible to speak whilst driving, eating, preparing food etc. This is a less tiring method of speaking without a larynx and is often the option of last resort; the mechanical ‘robotic’ voice can be very off putting. Strangers may react very negatively to the voice particularly on the telephone and this is embarrassing and upsetting. Social isolation is common.
About 20-30% of laryngectomees do not communicate using the above methods, this is usually because caring for the valve was very frustrating and difficult or they disliked the sound of the new voice. People who do not have a voice have to attract attention first - by waving, clapping or tapping someone on the shoulder, they articulate words silently, make gestures, write or use picture charts. Communication difficulties are likely to cause terrible frustration and sometimes severe anxiety as the easiest and quickest means of summoning help when they are in distress is lost.
Caring for a tracheostomy
A tracheostomy is a hole in the neck that a person breathes through instead of breathing through the mouth; the hole may be called a tracheostomy or a laryngectomy stoma. The airway is not connected to the mouth unless there is a one way speech valve in place. Nearly everyone needs some help caring for the tracheostomy and encouragement to eat and drink in the early months after surgery. A tracheostomy will leak mucus and become crusted over without care. Some people may need to change bedding and /or nightwear during the night due to excess mucus production. The hole can block with crust or mucus over 24 hours or sooner if a person has a cold. Blocking of the stoma is potentially life threatening. A person may need to attend to their stoma every few hours to keep it clean. This involves cleaning the stoma. Crusts need to be removed from the stoma to prevent blockage. Most people use cotton buds and tweezers to remove crusting.
They may need to wear a device to keep the stoma open and clear: a ‘tube’ or a ‘vent’ or ‘stoma button’ as well as a protective dressing over the stoma. This stoma button needs to be removed and cleaned regularly. The stoma needs to be protected from water e.g. during bathing, showering or the rain. Most people are able to manage themselves e.g. by wearing a shower shield. Protecting the stoma from the rain is difficult for those who cannot lift up their arms to hold an umbrella in the air because of neck surgery. Most people are also able to cough up mucus through their stoma most of the time and do not need home suction.
Rarely a humidifier or home suction may be needed to keep the stoma functioning – travelling away from home is likely to be restricted if this type of equipment is needed. If mucus is a problem and coughing is difficult the stoma may block from time to time – this is an emergency and will normally mean a carer has to be available to perform suction when the laryngectomee cannot breathe.
Mobility
The nose and throat provide important protection and airflow resistance to the lower airways which help to keep the alveoli open and protected from cold and dryness. Closure of the vocal cords assists the effort of coughing considerably and also the ability to perform certain activities such as straining to lift a heavy object and straining to open the bowels. Consequently lifting heavy items, straining to open the bowels and coughing up mucus are much harder than they were before. Techniques can be learnt to overcome the coughing difficulty but not the other difficulties. Secondly, the lower airways are much more open to irritants and damage and chronic lung problems on top of frequent coughs and colds and the need to protect the stoma may result. In order to prevent chronic lung damage humidification and filtration of air are necessity.
Most patients wear a HME (heat and moisture exchanger) to conserve heat and moisture during expiration (breathing out), then returning it to the inspired air. Examples of HME’s are:
- Buchanan bibs
- Laryngofoam
- Deltanex protectors, etc
People who have had a laryngectomy are more likely to have Chronic Obstructive Airways Disease and if breathlessness is severe or exercise tolerance much reduced walking is likely to be affected.
Swallowing and diet
Many people may have swallowing difficulties post-laryngectomy. Some people may need to liquidise food, make it semi-solid, or cut food up into very small pieces. Extra attention to proper and careful swallowing may be necessary. This may make mealtimes prolonged, and the person may have to reheat food during a meal.
Some people develop stricturing (tightening) of the neo-pharynx (reconstructed throat), making swallowing difficult and sometimes resulting in regurgitation problems during meals. Periodic stretching of the stricture under general anaesthetic may sometimes be required in order to continue with oral feeding.
Acid reflux is a common problem. Patients may experience reflux of stomach contents into the mouth and throat, and this may be worse when bending forwards, or when lying down. Sleeping propped up in bed may be necessary, as may lifestyle and dietary modifications, and some may require medicine such as ranitidine, omeprazole (Losec) to control this reflux.
Smell and taste are also greatly diminished, as air no longer flows through the nose and throat. Olfaction (sense of smell) plays a crucial role in the ability to appreciate the flavour of food. Therefore, so called ‘neck breathers’ have a decreased enjoyment of eating. In addition to this, olfaction is important for monitoring the safety of the environment. Thus, the laryngectomee will not be alert to the smell of fire, gas leaks and the presence of toxins in food that has spoilt.
Musculoskeletal problems
Shoulder dysfunction – loss of shoulder function is a potentially distressing consequence of neck dissection. This may cause a significant loss of shoulder flexion and abduction, and shoulder pain and drooping may also be a problem. This restricted range of movement of the shoulder, and loss of function can impact on all activities of daily living related to shoulder function; for example, washing, dressing, combing hair, writing, reaching for objects above shoulder level, reaching into cupboards, hanging out washing, etc. Severe pain in the neck and shoulder (s) may also occur as a consequence; and this pain often increases when moving the shoulder and lying on the affected shoulder.
Neck tightness, stiffness, loss of sensation in the neck, or a feeling of constriction and restricted range of movement may also be a problem. This can impact on everyday activities, such as turning the head to watch for traffic and other dangers. The appearance of the neck may also lead to psychological problems.
Psychological Effects
Particular problems for people who have had laryngectomy in addition to the general psychological effects of cancer (see general notes) are related to quality of life which may be severely impaired:
- Embarrassment because of altered voice or inability to speak
- Ability to swallow and enjoy food with others
- Cosmetic effect of having a hole in the throat, altered appearance of neck after neck dissection
- effects on taste and smell,
They may become socially reclusive without help and support.
Advanced, Recurrent or Metastatic Cancer
A person who has had treatment for advanced laryngeal cancer may have any of the problems related to speech or care of a tracheostomy. In addition to those problems there may be any of the symptoms of metastatic disease.
Amended November 2008
