Leptomeningeal Disease

Leptomeningeal disease (LMD) is cancer that has spread from somewhere else in your body to your cerebrospinal fluid (CSF) and leptomeninges. These are the membranes that surround your brain and spinal cord. It usually occurs in the later stages of cancer.

Approximately 5% of all people who have metastatic cancer are diagnosed with leptomeningeal disease.

Leptomeningeal disease isn’t common. But healthcare providers are seeing more cases as more people with cancer live longer. There isn’t a cure for leptomeningeal disease. Instead, healthcare providers focus on keeping the cancer from spreading. They work to ease symptoms and help people with LMD maintain their quality of life.

Other names for this condition are leptomeningeal carcinomatosis and leptomeningeal metastases (LMM).

Symptoms of leptomeningeal disease

LMD can cause many nervous system (neurologic) symptoms. The most common ones are:

• Headache
• Nausea and vomiting
• Changes in how you walk (your gait)
• Numbness or weakness in your arms or legs
• Confusion and changes in alertness, mood or behavior
• Problems with vision, like having double vision
• Hearing loss
• Back and leg pain
• Problems going to the bathroom
• Seizures

​Leptomeningeal disease causes

LMD happens when cancer spreads from somewhere else in your body to your cerebrospinal fluid (CSF) and leptomeninges. It’s an advanced and aggressive pattern of cancer. It means the condition has gotten more serious.

The leptomeninges are the inner part of the layers of membrane that cover and protect your brain and spinal cord. Cerebrospinal fluid is the clear fluid your brain makes that surrounds your entire central nervous system. It has direct contact with your leptomeninges. Normally, a network of veins drains this fluid unless something keeps the fluid from draining.

Cancer that spreads to your leptomeninges can block the normal flow of cerebrospinal fluid and create pressure on your brain. This is called hydrocephalus. It can cause many neurologic symptoms. The most common are headaches that get worse when you’re lying flat or headaches with blurry vision and nausea/vomiting.

Risk factors

This condition can affect anyone with any type of metastatic cancer. But people with the following kinds of cancer have a higher risk:

• Breast cancer
• Lung cancer
• Melanoma
• Acute lymphocytic leukemia
• Non-Hodgkin lymphoma

How doctors diagnose this condition

Healthcare providers diagnose leptomeningeal disease with an MRI of the brain and spine. They’ll also do a spinal tap (lumbar puncture or LP) to obtain cerebrospinal fluid. They’ll test it for tumor cells or cancer cell DNA.

Sometimes, an MRI can appear normal if the tumor spread is only microscopic. This can make it challenging to diagnose.

How is it treated?

There’s no cure for LMD. Instead, healthcare providers focus on slowing cancer spread and easing symptoms. Common treatments include:

• Radiation therapy: This treatment uses a machine that directs high-energy particles toward tumors. It can shrink tumors that are causing symptoms. Sometimes, healthcare providers recommend radiation to the whole brain and spinal cord.
• Intrathecal chemotherapy: This treatment delivers chemotherapy drugs directly to the cerebrospinal fluid. It kills cancer cells there.
• Targeted therapy: This treatment targets weaknesses in cancer cells with certain gene errors (mutations). This stops the cells from growing and causes them to die.

Your provider may recommend medicines or procedures to manage specific symptoms, such as:

• Antiseizure medications
• Corticosteroids to provide pain relief
• Brain shunt to redirect cerebrospinal fluid that’s built up in your brain and causing pressure

Hospice care

Hospice care helps people who have advanced, life-limiting illnesses feel comfortable and live without pain before they die. An LMD diagnosis means that a person with cancer has reached the late stages of an incurable disease. At this point, it may make sense to shift the focus from treatment to hospice. Much depends on how you feel and the risks versus the benefits of treatment.

Consider asking your healthcare provider if you’d benefit from hospice care. These aren’t easy conversations, but they’re important. Your provider can help you understand how what’s happening in your body informs each step of your care.

How long can you live with leptomeningeal carcinomatosis?

Leptomeningeal disease is a major complication of advanced cancer. If you develop this condition, you’re already in the more serious stages of cancer. In general, people who receive treatment for this condition live for several months after diagnosis. People who don’t have treatment live for several weeks after diagnosis.

That said, every person’s situation is unique, and these numbers are highly variable. Outlook depends on factors like your overall health and the tumor type. For instance, new targeted therapies are helping people with some forms of LMD live longer than a year. Earlier detection with better cerebrospinal fluid testing and new treatments are providing hope to people with leptomeningeal disease.

Your healthcare provider is your best resource for learning how LMD impacts your life expectancy.

What’s the difference between brain metastases and leptomeningeal disease?

The difference is that brain metastases are tumors that have traveled to your brain tissue. Leptomeningeal disease is cancer that travels to your cerebrospinal fluid and membranes surrounding your brain and spinal cord. Brain metastases and LMD can happen separately or together.