Adenoid cystic carcinoma is a rare type of cancer that usually starts in the salivary glands, located under the tongue and on both sides of the jaw. This slow-growing cancer can also occur in other parts of the mouth, throat, and body, such as sweat glands or tear glands. While it affects more women than men, adenoid cystic carcinoma can develop at any age, typically between the teens and 80s.
Symptoms of Adenoid Cystic Carcinoma
The first sign of adenoid cystic carcinoma is often a painless lump inside the mouth, under the tongue, or inside the cheek. As the cancer grows slowly, it may spread to other parts of the body before noticeable symptoms appear. Other symptoms may include:
If you experience any of these symptoms, it's important to consult your doctor for a proper evaluation.
Diagnosing Adenoid Cystic Carcinoma
To diagnose adenoid cystic carcinoma, your doctor will likely start with a biopsy. This involves taking a small sample of the tumor for examination by a pathologist. The tumor may appear solid, round and hollow like a tube, or cribriform (resembling Swiss cheese). Solid tumors tend to grow faster than other types.
Your doctor may also recommend imaging tests to determine the size, location, and potential spread of the tumor. These tests may include:
MRI (magnetic resonance imaging)
CT scan (computerized tomography)
PET scan (positron emission tomography)

Treatment Options for Adenoid Cystic Carcinoma
The primary treatment for adenoid cystic carcinoma is surgery followed by radiation therapy. During surgery, the doctor will remove the tumor along with a margin of healthy tissue to ensure all cancerous cells are eliminated. Unlike many other cancers that spread through the lymph nodes, adenoid cystic carcinoma spreads along nerves. Your doctor will carefully examine the nerves to remove any cancerous tissue while minimizing damage.
In some cases, parts of the windpipe or voice box may need to be removed. If the entire tumor cannot be safely removed, or if there are concerns about the cancer spreading, radiation therapy may be recommended. The three main types of radiation therapy are:
External beam radiation
Internal radiation therapy (brachytherapy)
Neutron therapy
Radiation therapy targeting the head and neck can cause side effects such as dry mouth, difficulty swallowing, and soreness. It may also damage teeth. Discuss these side effects with your doctor and ask about available management options.
Prognosis and Follow-Up Care
Adenoid cystic carcinoma can be challenging to eliminate completely, and tumors may recur years later, either in the same location or elsewhere in the body, particularly the lungs. However, nearly 90% of people with this cancer survive at least five years after diagnosis.
After treatment, regular checkups are crucial to monitor for signs of new tumors. These may involve X-rays, CT scans, or MRIs, depending on your specific case. By staying vigilant and working closely with your healthcare team, you can effectively manage adenoid cystic carcinoma and maintain your quality of life.
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