Living with Proliferating trichilemmal cyst
A usually benign (noncancerous) growth from a hair follicle, most often found on the scalp of older women.
Understanding Proliferating trichilemmal cyst
Though benign, it may be locally aggressive, and in very rare cases it can become malignant. It usually appears as one growth in older women. It isn't painful, but it can grow large and press on and damage nearby skin, causing wounds and foul-smelling discharge. About 90% are on the scalp.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- A skin growth, most often on the scalp
- Open sores on the skin (ulcers)
- Sparse hair over the growth
- Foul-smelling discharge if the skin is damaged
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
Specialists who may be involved include cancer specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease Foundation
- 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. It says the tumor starts in the hair follicle.
Also known as: pilar cyst; pilar tumor; pilar tumour; proliferating pilar cyst; proliferating pilar tumor; proliferating pilar tumour
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Proliferating trichilemmal cyst.
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