MouthMade

Frequently asked questions

What is oral mucositis?

Oral mucositis (OM), also sometimes known as stomatitis, is a side effect of cancer therapy and is characterised by a red, swollen and ulcerated mouth and tongue. The hallmark of oral mucositis is pain and the pain can be so severe that it is very hard to eat, drink and speak. It may even mean a feeding tube is necessary just to get enough nutrients to carry on with the cancer therapy.

What causes oral mucositis?

Chemo- and radiotherapy work by preventing the growth of new cancer cells by killing rapidly dividing cancer cells that are already there. Unfortunately, these treatments can’t tell the difference between dividing healthy cells and dividing cancer cells. The side effects of therapy, including oral mucositis (OM), happen when healthy dividing cells are also killed. The combination of chemo- and radiotherapy increases the risk of developing severe oral mucositis. The symptoms of oral mucositis also tend to get worse the longer radiotherapy treatment lasts.

During radiotherapy for head and neck cancer or Hematopoietic Stem Cell Transplant (HSCT) (sometimes called a Bone Marrow Transplant [BMT]), the beam of radiation passes near and in the mouth. Normally healthy cells in the mouth quickly divide and replace surface cells with new cells. However, radiotherapy kills these dividing cells meaning the surface cells cannot be replaced, causing ulcers to form.

Chemo- and radiotherapy to the head and neck damage the glands in the mouth that produce saliva (spit), causing the mouth to be drier than normal. A dry mouth means the natural lubrication saliva provides for eating is much less. This makes it difficult to swallow and the mouth is more likely to be damaged by hard food that is normally washed away by saliva.

The type of chemotherapy used to treat the cancer will also affect the likelihood of developing oral mucositis. There are many types of chemotherapy that are known to cause oral mucositis. Some of these therapies are listed below:¹

• 5-fluorouracil
• methotrexate
• doxorubicin
• etoposide
• melphalan
• cytosine arabinoside
• cyclophosphamide

All radiotherapy that passes in and near the mouth is likely to cause oral mucositis.

What should I do if I have oral mucositis?

Speak to your doctor or nurse if you have symptoms of oral mucositis and read our section on Treating OM.

Who gets oral mucositis?

Almost half of the people who are treated with chemotherapy and nearly everyone receiving head and neck radiotherapy or a Hematopoietic Stem Cell Transplant (HSCT) will get oral mucositis (OM).

As well as the type of cancer being treated, the likelihood of developing oral mucositis varies depending on the situation, lifestyle and medical history of the person. Those at particular risk are:  

• young people and the elderly
• those with previous oral health problems or oral mucositis
• people who have poor oral hygiene during treatment
• smokers
• people who drink alcohol
• diabetic patients
• those receiving certain types of chemotherapy (see What causes OM?)

How long does oral mucositis last?

In people undergoing chemotherapy, damage to the lining of their mouths may start from day one of treatment. The first stages of oral mucositis (OM) happen below the mouth’s surface and are not always noticeable. Typically people don’t start noticing symptoms until 5 to 8 days after starting treatment. The symptoms of oral mucositis can last between 7 to 14 days before healing begins. With each cycle of chemotherapy the risk of developing oral mucositis increases and the severity of the condition often worsens.²

Oral mucositis develops later with radiotherapy (at 2 weeks) and healing doesn’t begin until the end of therapy. Therefore with radiotherapy, the symptoms of oral mucositis can continue for up to 8 weeks.

What are the consequences of oral mucositis?

Pain: Pain is the major symptom of oral mucositis (OM). It can make it very difficult to eat and drink, at a time when people with cancer need the physical strength to cope with aggressive cancer therapies. Without enough food and drink, people may feel weak, become dehydrated and lose weight.

Infection: The sores and ulcers that line a mouth as a result of oral mucositis are at serious risk of infection. With poor oral hygiene, viruses, bacteria or fungi can infect the exposed ulcers. If this happens the infection may move into the blood, called a blood infection or septicaemia. People receiving a Hematopoietic Stem Cell Transplant (HSCT) are more likely to get infections and septicaemia, as treatment means their bodies are less able to fight off infection.

Loss of taste: The tongue is very sensitive to radiation. If it is exposed during radiotherapy the taste buds on the tongue’s surface can become damaged. Some patients may even experience a complete loss of taste during radiotherapy. The taste buds will usually begin working normally again within 4 months of finishing treatment, although the long-term effect is different from person-to-person and in some cases the taste buds may never fully recover.

Treatment outcome: Perhaps most the worrying consequence of oral mucositis is that many people develop it so severely it affects the dose of chemotherapy their body can cope with. This could ultimately influence the success of the cancer treatment.

Other: People with oral mucositis can sometimes feel ashamed of their condition and so they spend less and less time with their family, children and friends. This, coupled with the inability to eat and talk, can lead to social isolation and psychological distress. 

If getting enough food becomes a major concern, the use of a feeding tube may be needed to ensure the person receives enough food to cope with their therapy. The tube will be inserted through the nose if feeding is only needed for a short time, but it can be inserted directly into the stomach if longer term feeding is necessary.

How can I prevent oral mucositis?

See our section on Preventing OM.

Always speak to your doctor or nurse if you are worried about oral mucositis.

Download an oral mucositis patient factsheet for your own information and why not print out a nurse factsheet to give to your nurse.

1. Pico J-L et al. The Oncologist 1998;3(6):446–451.
2. Sonis ST. J Support Oncol 2004;2:3–8.