Management of PROS is limited and may be based on symptoms rather than its root cause—PIK3CA mutations

The way your doctor manages your PIK3CA-Related Overgrowth Spectrum, or PROS, symptoms can vary depending on which PROS condition you have been diagnosed with and how it presents (appears) in your body. You will work with your health care team to determine which approach makes sense to you based on your symptoms and goals.  

 

Current management can include:

Current Management Options Current Management Options
 
  • Surgery: If you have overgrowth that requires intervention, your doctor may decide that surgery is needed. Surgery involves removing areas of overgrowth. When a person has this type of debulking surgery, the lesions may come back in the same area, and the procedure may need to be repeated

  • Interventional radiology: If you have vascular malformations, your doctor may use interventional radiology, which involves obtaining images and using different techniques to cut off blood flow from blood vessels and surrounding body tissues so that affected cells die

  • Monitoring: You and your doctor may decide that the most appropriate management of your current symptoms is careful monitoring. This means that you and your doctor carefully watch to see how your symptoms change

  • Compression and elevation: Vascular issues, such as bleeding, venous insufficiency, and lymphedema (accumulation of lymph/lymphatic fluid), can be managed with applied pressure and the raising of limbs to reduce inflammation and swelling

 

The risks and benefits of these approaches need to be considered for each person to help him/her decide, with their doctor, if these are options.

Researchers are investigating potential treatment options that may address the common cause of PROS, PIK3CA mutations.

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