What Is LAM?
- LAM lung tumors can cause the cells lining the lungs to spread into areas of the lung where they don’t belong
- The air sacs throughout the lungs also swell and form small pockets called cysts. These cysts destroy normal lung tissue, leading to breathing difficulties
As Many as 40% of Women With TSC May Be Affected By LAM
LAM is less common in men—about 12% of men with TSC will develop it in their lifetime.
Signs & Symptoms
Manage Your Symptoms
Pulmonologist
Pulmonologists specialize in the structure, function, and diseases of the lungs. If you have TSC, they can tell you if you have LAM.
LAM does not usually appear on an x-ray.
In fact, because it can only be imaged with a high-resolution computed tomography (HRCT) scan of the chest, many people with LAM may go undiagnosed for years. And because symptoms are like those of asthma, bronchitis, or emphysema, an accurate diagnosis can be delayed. So, keeping track of any changes in your body is important.
Pulmonologists may order:
- Lung function tests to see how well you are breathing
- Pulse oximetry to measure the oxygen level in your blood and your heart rate
- Chest x-ray
- Tissue biopsy (a doctor will take a small piece of tissue from the lung(s) for testing)
- HRCT, a high-definition scan of the lungs
- Blood tests
Information from the latest TSC expert guidelines:
- Get your lungs checked regularly and talk with your doctor about LAM—you should have yearly testing, called pulmonary function testing
- Make a note of breathing problems to see if there is a pattern
- Even if you do not have lung tumors, you should still have an HRCT scan every 5 to 10 years
- Talk to your doctor about your smoking and estrogen use, as these could play a role in symptoms
- Tell your doctor right away if you experience shortness of breath, chest pain, cough, and/or fatigue
