Living with Extranodal nasal NK/T cell lymphoma
A rare cancer that usually starts in the nose, sinuses, or upper airway, mostly in men in their 50s.
Understanding Extranodal nasal NK/T cell lymphoma
It mostly affects men in their 50s. It can cause a hole in the roof of the mouth and sores that damage the face or upper airway. In advanced stages it can spread to other parts of the body, which makes it harder to treat. Some cases start in the lymph nodes.
Signs & symptoms
GARD describes these symptoms in its summary:
- A mass in the nose
- Nasal bleeding
- Trouble breathing through the nose
- A hole in the roof of the mouth
- Sores that damage the face or upper airway
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 blood and bone marrow specialists, 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
- Blood and bone marrow specialists (hematologists); 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 American Cancer Society 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 doesn't describe a cause for this condition yet.
Also known as: angiocentric t-cell lymphoma; extranodal natural killer/t-cell lymphoma, nasal type; extranodal nk/t lymphoma-nasal; extranodal nk/t-cell lymphoma, nasal type; lethal midline granuloma; nasal t/natural killer-cell lymphoma
Patient organizations
- American Cancer SocietyExtranodal nasal NK/T cell lymphoma · United States
- HealthTree FoundationExtranodal nasal NK/T cell lymphoma · United States
- Lymphoma Research FoundationExtranodal nasal NK/T cell lymphoma · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Extranodal nasal NK/T cell lymphoma.
Explore research for Extranodal nasal NK/T cell lymphoma
Explore actively recruiting Extranodal nasal NK/T cell lymphoma studies with HealthSpark.
Find actively recruiting studies for Extranodal nasal NK/T cell lymphoma 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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