Living with Familial papillary thyroid carcinoma with renal papillary neoplasia
An extremely rare inherited tumor syndrome with papillary thyroid cancer and, in some people, kidney tumors.
Understanding Familial papillary thyroid carcinoma with renal papillary neoplasia
It involves papillary thyroid cancer and papillary kidney tumors. It is listed as starting in older adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Papillary thyroid cancer
- Papillary kidney cancer (renal cell carcinoma)
- Enlarged thyroid (goiter)
- Thyroid with several lumps (nodular goiter)
- Swollen lymph nodes
- Head and neck tumor
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, genetic specialists, hormone specialists and kidney 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); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Kidney specialists (nephrologists)
- 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 National Kidney 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
Changes in genes cause it. GARD doesn't name a gene or describe how it is inherited.
Also known as: papillary thyroid carcinoma with renal papillary neoplasia; ptc-rcc; thyroid carcinoma, papillary, with papillary renal neoplasia
Patient organizations
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial papillary thyroid carcinoma with renal papillary neoplasia.
Explore research for Familial papillary thyroid carcinoma with renal papillary neoplasia
Explore actively recruiting Familial papillary thyroid carcinoma with renal papillary neoplasia studies with HealthSpark.
Find actively recruiting studies for Familial papillary thyroid carcinoma with renal papillary neoplasia 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Familial papillary thyroid carcinoma with renal papillary neoplasia studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Familial papillary thyroid carcinoma with renal papillary neoplasia
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Familial papillary thyroid carcinoma with renal papillary neoplasia experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.