Hereditary Leiomyomatosis and Renal Cell Cancer

What are the screening options for HLRCC?

There are no specific screening guidelines for HLRCC. The most common screening options for those at a higher than average risk of HLRCC are regular skin examinations and an abdominal/pelvic computed tomography (CT) scan (a three-dimensional picture of the inside of the body using an x-ray machine) with contrast (a special dye) or a magnetic resonance imaging (MRI) every two years. An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. If a suspicious kidney lesion is found, a CT scan with and without contrast, renal ultrasound examination, and/or an integrated positron emission tomography-computed tomography scan (PET-CT) (a way to create pictures of organs and tissues inside the body using a small amount of a radioactive substance) may also be done to learn more about the suspicious area. Also, women may be recommended to have regular gynecological examinations and imaging studies, such as an ultrasound, to look for uterine fibroids.

Screening options may change over time as new technologies are developed and more is learned about HLRCC. It is important to talk with your doctor about appropriate screening tests.