Living with Carotid body paraganglioma
A tumor in the neck, near where the main artery to the head splits, that usually grows slowly.
Understanding Carotid body paraganglioma
The tumor can be benign or malignant (cancer). Most people notice a slow-growing mass in the neck that is not painful.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes this sign:
- A slow-growing, painless lump in the neck
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
Pheo Para Alliance 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: Pheo Para Alliance
- 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 Pheo Para Alliance
- 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 doesn't describe a cause for this condition yet.
Also known as: chemodectoma; chemodectomas; neoplasm of carotid body; paraganglioma of carotid body; paraganglioma, carotid body, somatic
Patient organizations
- Pheo Para AllianceCarotid body paraganglioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Carotid body paraganglioma.
Explore research for Carotid body paraganglioma
Explore actively recruiting Carotid body paraganglioma studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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