Monitor Your Kidneys
TSC kidney tumors are benign and can grow rapidly. These kidney tumors are called renal angiomyolipomas or sometimes AMLs for short. They grow an average of 1.25 cm/year, which sounds like a little but is actually a lot. Most of the time, people with kidney tumors do not even know they have them because they usually don’t cause any pain or discomfort.
Experts agree that when tumors reach 4 cm or more in length, they can cause serious harm by rupturing (hemorrhaging). Sometimes when the tumors are that large, they can cause pain or tenderness in your lower back . Often the pain feels like it moves to the side or groin area.
If these kidney tumors rupture, they can cause life-threatening bleeding and require emergency surgery. Because of this, it is important for you to get regular scans and talk with your doctor regularly to understand if this is a risk for you.
The more you communicate with your doctor, the more you can take control of your tumors.
The Lifetime Risk of Hemorrhage From These Tumors Is Between 25% and 50%
The Story of TSC Kidney Tumors
Watch a short animated film about TSC and kidney tumors.
The Story of TSC Kidney Tumors
Watch a short animated film about TSC and kidney tumors.
Kidney Tumor Conversation Starter
Print this guide to help you know what to ask your doctor about your kidney tumors. It has tips to help your conversation, including useful questions to ask at each visit. Use it to write notes and questions, and bring it to your next doctor's visit.
Signs & Symptoms
Kidney tumors usually occur during adolescence or adulthood, but they can develop at any time. That’s why people with TSC should have their kidneys checked regularly.
Many times, the tumors grow and can be harmful without any symptoms. But if you have the following symptoms, call your doctor right away:
- Blood in the urine
- Pain in the lower back and/or abdomen
Manage Your Symptoms
Nephrologist and urologist
These specialists check for kidney tumors or kidney cysts. Nephrologists specialize in the kidneys, especially their structure, function, and diseases, including TSC. Urologists specialize in the urinary organs, which include the kidneys. They also perform surgery.
Ultrasound, MRI, and CT scans
Your specialist will likely recommend regular scans of your kidneys. These scans will include at least one of the following:
- Ultrasound: an imaging method that uses sound waves to produce images of the internal body
- Magnetic resonance imaging (MRI): a scan that uses a magnetic field and radio waves to produce pictures of the internal body
- A computerized axial tomography (CT, or CAT) scan: a procedure that uses x-rays to create pictures of the cross sections of the organs and tissues within your body
Your TSC kidney tumors should be monitored regularly
- To avoid serious complications, have an MRI at least every 1 to 3 years to check the growth of your tumors
- An MRI is preferred, but you can have an ultrasound or CT scan
- Ask your doctor about the size of your kidney tumors after each MRI
- If you have kidney tumors that are about 4 cm long, discuss a treatment plan with your doctor.* Treatment options include surgery and medication
- Have your kidney function and blood pressure checked at least once a year
*Experts recommend treating TSC kidney tumors greater than 3 cm in size that are not symptomatic and growing.
