MouthMade

Frequently asked questions

What is oral mucositis?

Oral mucositis, also sometimes known as stomatitis, is a side effect of cancer therapy and is characterized 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?

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

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

Radiation to the head and neck and chemotherapy damage the glands in the mouth that produce saliva (spit), causing the mouth to be drier than normal. A dry mouth means that there is less saliva which makes it difficult to chew and swallow.  Dry mouth is also 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 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:

• 5-fluorouracil
• Methotrexate
• Doxorubicin (Adriamycin®)
• Etoposide (Vepesid®)
• Melphalan
• Cyclophosphamide
• Capecitabine (Xeloda®)
• Docetaxel (Taxotere®)
• Cisplatin

All radiation that passes through and near the mouth is very 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 radiation or undergoing Bone Marrow Transplant (BMT) or Hematopietic Stem Cell Transplantation (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:  

• children 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?

With both chemotherapy and radiation damage to the lining of mouth starts on day one of treatment. The first stages of oral mucositis happen below the mouth’s surface and are not always noticeable.

Typically people undergoing chemotherapy 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.¹

Oral mucositis manifests later with radiation (at 2 weeks) and healing doesn’t begin until the end of therapy. Therefore with radiation for head and neck cancer, 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 fluids, 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 ulcers. If this happens the infection may move into the blood, called a blood infection or sepsis. People receiving chemotherapy are more likely to get infections and sepsis, as treatment means their bodies are less able to fight off infection. In some cases, infections can even cause death.

Loss of taste: If the tongue is exposed during radiation the taste buds on the tongue’s surface may get damaged. Some patients may even experience a complete loss of taste during radiation. 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 the most worrying consequence of oral mucositis is that many people develop it so severely it interferes with prescribed cancer therapy. This could ultimately influence the success of the cancer treatment.

Other: People with oral mucositis can sometimes feel embarrassed about their condition and so they spend less and less time with their family, children and friends. This, along with not being able to eat and talk, can lead to feeling lonely and depressed.

If eating enough food becomes a major concern, the use of a feeding tube may be needed to ensure the person receives enough food to deal with their therapy.
 

What can I do about oral mucositis?

See our section on Being Proactive about OM.

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

Download an oral mucositis patient factsheet for your own information and a nurse factsheet to give to your nurse.

1. Sonis ST. J Support Oncol 2004;2:3–8.