diet
What questions should I ask my care team when talking about treatment options for kidney tumors related to VHL disease?
Good questions can help guide talks with your care team about kidney growths caused by VHL disease.
Asking clear questions can help you and your care team talk through treatment for kidney tumors linked to VHL disease. People with VHL disease can develop tumors, or abnormal growths, in their kidneys. Most VHL-related tumors are benign, meaning not cancer. However, kidney tumors in VHL disease can become cancerous. The right treatment depends on the tumor's size and location. Treatment usually involves surgery to remove the tumor. Some tumors are treated with radiation therapy instead. Doctors aim to treat tumors while they are still small. Treating tumors early can help prevent permanent damage. People with VHL disease need careful, ongoing care. This should come from a doctor or team familiar with the disease. Bringing clear questions to your care team can help you understand your treatment choices. Helpful questions include: What are my treatment options for this tumor? Why is surgery, radiation, or watching recommended over other options? How will we decide whether to treat this tumor now or watch it? Does my care team include specialists experienced with VHL disease?
Free guide
10 questions to ask your care team about Von Hippel-Lindau disease
You don't have to become an expert overnight — you just need the right questions in your pocket. Bring these to your next visit.
We’ll email you the guide and occasional plain-language updates. No spam; unsubscribe anytime. Educational only — not medical advice.
Still have a question?
Ask in your own words. Cairava explains it plainly and gives you questions for your care team. Anonymous — identifying details are stripped automatically. Not medical advice.
Ask anything about Von Hippel-Lindau disease
Ask in your own words. We’ll explain it plainly, map out what to expect, and give you questions to bring to your care team.
Sources
Written in plain language from the public health sources cited above and automatically checked for accuracy, reading level, and safe framing before publishing. Read about how we write and check this content.
This page is educational, not medical advice. Talk with your care team about decisions that apply to you. If something feels urgent, contact your care team — for emergencies call your local emergency number.
More about Von Hippel-Lindau disease
- What does it mean when VHL disease is called "autosomal dominant," and why does that matter for my family?
- What does the VHL gene do, and how does a change in it lead to tumors growing throughout the body?
- What is Von Hippel-Lindau disease, and why does it cause tumors and cysts to grow in so many different places?
- What is belzutifan (Welireg), and which VHL disease tumors has the FDA approved it to treat?
- When and why do doctors monitor kidney tumors with imaging instead of treating them right away, and what does that monitoring look like?
- What kind of kidney tumor is most common in people with VHL disease, and how is it different from kidney cancer in people without VHL?