Living with a laryngectomy stoma

It can take time to recover from surgery to the larynx. You may feel embarrassed about your stoma. This can affect your confidence and may be distressing. 

It can take time to adjust when you are learning how to speak in a different way and breathe through a stoma.

It can help to tell your family and close friends how you feel. Your cancer doctor, specialist nurse and speech and language therapist (SLT) can give you advice and support. They may put you in contact with someone in your area who has had a laryngectomy.

Cancer of the larynx can affect people both emotionally and practically. If treatment has affected the way you breathe or speak, it can affect the way you feel about yourself and how you live your life.

Talking about your feelings can help reduce feelings of stress, anxiety and isolation. There are lots of different ways to do this:

• Try to let your family and friends know how you are feeling so that they can support you.
• You may find it helpful to visit our laryngeal (larynx) cancer forum. You can share your experience, ask questions and get support online. 
• You could also ask your specialist nurse or SLT if there are any local support groups. These can help support you and give practical advice.

We have more information about getting help with your emotions during and after cancer treatment.

When you breathe in, air goes down into your lungs through your stoma. The air is no longer warmed and moistened by your mouth and nose. The cooler, drier air can irritate your lungs.

You may produce more mucus or phlegm. You will not be able to clear the mucus by sniffing or blowing your nose. When you cough, the mucus is coughed out through your stoma, not your mouth.

It is important to keep your stoma covered with a stoma cover or filter. These are also called heat and moisture exchangers (HMEs). Your cancer doctor, specialist nurse or speech and language therapist (SLT) can show you how to use them.

The HME makes sure that the air you breathe is warmed and filtered. This will help reduce the amount of mucus, and reduce the risk of chest infections. You can get HMEs on prescription. Your specialist team will talk to you about this.

When you have a bath or shower, you need to protect your stoma so that water does not get into your lungs. To do this, you need to cover the stoma with an aid or shield.

Your specialist nurse or specialist nurse or speech and language therapist (SLT) can give you information about showering aids or shields and how to use them.

After surgery, your neck may feel numb. To avoid cutting yourself when shaving, try using an electric razor.

Your senses of smell and taste are affected because you no longer breathe through your nose and mouth. This can improve after a few months, but some people might have long-term problems.

There are ways to try and improve your sense of taste and smell. Your speech and language therapist (SLT) may be able to teach you these.

Most people who have had a laryngectomy are able to speak afterwards. But this will be in a different way to before surgery.

Some people cope well with learning to speak again. For others, it can be practically and emotionally difficult. But there are other ways to communicate. The type of communication you use depends on your situation, the type of surgery you had, and your preferences.

You will see a speech and language therapist (SLT) before your operation to talk about different ways of communicating.

You may be able to watch videos of people talking after a laryngectomy. Or you may be able to meet someone who has had similar surgery. Some people find this very helpful. Others prefer written information.

We have a video about speech therapy after a laryngectomy that shows an SLT and someone who has had a laryngectomy. They talk about different ways to communicate, including using a voice prosthesis valve.

There are other ways to help you communicate if you do not have a valve. These include:

• oesophageal speech
• an electrolarynx
• a combination of oesophageal voice and electrolarynx
• an electronic keyboard
• an app on a smart phone or tablet
• mouthing or writing.

This operation can be done at the same time as a laryngectomy or at a later time. It involves a hole (fistula) being made through the wall between your windpipe and gullet (the trachea and oesophagus).

A small valve called a voice prosthesis is put into the opening to connect the windpipe to the gullet. The valve is one-way. This stops food and fluids passing into the windpipe.

When the stoma is covered with a finger or thumb and you breathe out, air from the lungs is pushed through the valve to make a voice by vibrating the muscles in the gullet.

After your valve has been fitted, you will be seen regularly by the SLT. They will support you as you adjust to living with your voice prothesis valve and caring for it.

It can take time to learn how to speak with a voice prosthesis. The voice can sound quite natural and you will speak with your usual accent. It is usually a lower pitch than before.

Some people may be able to use a hands-free valve. This allows them to speak without using their finger to cover the stoma. These are not suitable for everyone, but you can ask your cancer doctor or SLT about it.

Sometimes, people choose to learn a technique called oesophageal speech. You can learn this as you recover from your laryngectomy.

In oesophageal speech, air is squeezed down into the oesophagus (gullet) from the mouth. As the air moves back up from the oesophagus, your throat muscles vibrate and make a sound. As with normal speech, movements of your lips, cheeks and tongue shape the sound into words.

Oesophageal speech has the advantage of not needing any equipment. Some people find it easy to do, but others find it more difficult. It is usually best to practise little and often.

Your SLT can help you develop the best speech possible. They can talk to you about other ways of communicating if this technique does not work for you. They will also help you use your new way of talking for social situations and on the telephone.

There are different types of electronic aids available to help you produce an artificial voice.

You may be given one to use while you practise developing your new voice. You hold them next to your neck under the chin. They make sound vibrations in the mouth that you can form into speech.

Your SLT will help you choose the type that works for you. They will show you how to use it and look after it.

Some people like to use electronic keyboards to communicate. These are like small typewriters. Mini-laptops, tablets or text messaging on your mobile phone can also be good.

There are also different types of writing device available. Your SLT can tell you about these.