Living with Adenoid cystic carcinoma
A rare cancer that starts in glandular tissue, most often in the salivary glands of the head and neck.
Understanding Adenoid cystic carcinoma
It most often starts in the major and minor salivary glands of the head and neck. It can also occur in the breast, uterus, or other places. ACC often spreads along nerves, and it may spread through the bloodstream. It spreads to lymph nodes in about 5% to 10% of cases.
Signs & symptoms
Symptoms depend on where the tumor is. GARD's summary says they may include:
- Painless lump in the mouth or face
- Bulging eye or vision changes
- Breathing symptoms or voice changes
- Pain
- Nerve paralysis in advanced tumors
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Adenoid Cystic Carcinoma Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Adenoid Cystic Carcinoma Research Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Adenoid Cystic Carcinoma Research Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the cause of ACC is currently unknown. It typically does not run in families.
Also known as: adenocarcinoma, cylindroid; adenocystic carcinoma; adenoid cystic cancer; cylindroid adenocarcinoma; cylindroma; cylindroma (except cylindroma of skin, m-82000)
Patient organizations
- Adenoid Cystic Carcinoma Research FoundationAdenoid cystic carcinoma · United States
- Adenoid Cystic Carcinoma Organization InternationalAdenoid cystic carcinoma · United States
- American Cancer SocietyAdenoid cystic carcinoma · United States
- The Oral Cancer FoundationAdenoid cystic carcinoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Adenoid cystic carcinoma.
Explore research for Adenoid cystic carcinoma
Explore actively recruiting Adenoid cystic carcinoma studies with HealthSpark.
Find actively recruiting studies for Adenoid cystic carcinoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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