LAM (lymphangioleiomyomatosis)

Complications of LAM 

LAM can affect people in different ways. Some people may develop complications that affect the lungs, kidneys or lymphatic system. Your healthcare team will monitor for these complications and work with you to find the treatment that best meets your needs. 

Collapsed lung (pneumothorax) 

A collapsed lung is one of the most common complications of LAM. It happens when a lung cyst bursts and air leaks into the space around the lung. 

Symptoms can include: 

• sudden chest or shoulder pain 
• a sudden increase in shortness of breath.

For some people, a collapsed lung is the first sign of LAM. A pneumothorax is a medical emergency and requires urgent treatment in hospital to remove the trapped air and allow the lung to re-expand.  

Because a collapsed lung can happen more than once in people with LAM, a procedure called pleurodesis may be recommended to help prevent it from happening again. 

Kidney growths (angiomyolipomas) 

Around half of people with LAM develop non-cancerous kidney growths called angiomyolipomas (AMLs). 

Most AMLs are small and do not cause symptoms. However, larger AMLs can sometimes cause pain or bleeding. They can be detected using tests such as ultrasound, CT scans or MRI scans.  

Most AMLs only need monitoring. If they become large or cause symptoms, treatment may be recommended. Medicines that help slow the growth of LAM cells can help reduce the size of AMLs. Other procedures may be needed if an AML is causing pain or bleeding. 

Fluid around the lungs 

LAM can sometimes affect the lymphatic system, which helps move fluid through the body. This can cause lymph fluid to build up around the lungs, making it harder to breathe. 

In rare cases, some people may cough up a small amount of milky or whitish fluid. Treatment for LAM can often help manage this complication and lower the chance of it coming back. 

Fluid in the abdomen 

LAM can also affect the lymphatic system in the abdomen (tummy). This may cause swelling, bloating or discomfort. Treatment for LAM can often reduce fluid build-up and help prevent it from returning.