Leptomeningeal Disease

What is leptomeningeal disease?

Leptomeningeal disease (also known as LMD, leptomeningeal metastases, or LM) is cancer in your cerebrospinal fluid and in your leptomeninges, the membranes that surround your brain and spinal cord. It happens when an advanced cancer spreads from part of your body to your cerebrospinal fluid and leptomeninges.

Leptomeningeal disease isn’t common, but healthcare providers are seeing more cases as more people live longer with cancer. There isn’t a cure for leptomeningeal disease; instead, healthcare providers focus on treatment to keep the cancer from spreading, ease symptoms and maintain quality of life.

How common is leptomeningeal disease?

Approximately 5% of all people who have cancer develop leptomeningeal disease. The condition most commonly affects people who have the following kinds of cancer:

• Breast cancer: This is the most common cancer linked to leptomeningeal disease. About 3% to 5% of women who have breast cancer will develop leptomeningeal disease. Studies show that women who have triple negative breast cancer or a subtype called lobular breast cancer have more risk of developing leptomeningeal disease than women who have other types of breast cancer.
• Lung cancer: Both non-small cell lung cancer (NSCLC) and small-cell lung cancer (SCLC) can spread to people’s leptomeninges and cerebrospinal fluid. Healthcare providers estimate between 4% and 7% of all people who have NSCLC will develop leptomeningeal metastases. About 11% of people who have SCLC will develop LMD.
• Melanoma: About 5% of people who have melanoma will develop leptomeningeal disease.
• Acute lymphocytic leukemia (ALL): Approximately 1% to 10% of people who have ALL develop leptomeningeal disease.
• Non-Hodgkin’s lymphoma (NHL): About 5% to 10% of people who have NHL develop leptomeningeal disease.

What is the difference between brain metastases and leptomeningeal disease?

Brain metastases (metastatic brain tumors) and leptomeningeal disease happen when cancer spreads. The difference is that brain metastases are tumors that have traveled to your brain tissue itself. Leptomeningeal disease is cancer that travels to your cerebrospinal fluid and membranes surrounding your brain and spinal cord. Brain metastases and leptomeningeal disease can happen independently or together.

What are leptomeningeal symptoms?

Leptomeningeal disease has many symptoms, but the most common are:

• Headache.
• Nausea and vomiting.
• Changes in gait or how you walk.
• Hearing loss.
• Problems with vision, such as having double vision.
• Seizures.
• Confusion and changes in alertness, mood or behavior.
• Back and leg pain.
• Numbness or weakness in legs or buttocks.
• Problems with peeing or pooping.
• Other new neurologic problems.

What causes leptomeningeal disease?

Leptomeningeal disease happens when a growing cancer spreads from its original site in your body to your cerebrospinal fluid and leptomeninges. This represents an advanced and aggressive pattern of cancer and is a significant event.

The leptomeninges are the inner part of your meninges (the three layers of membrane that cover and protect your brain and spinal cord). Cerebrospinal fluid is the clear fluid produced by your brain that surrounds your entire central nervous system and 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 and cerebrospinal fluid can cause many neurologic symptoms and can block the normal flow of cerebrospinal fluid and create pressure on your brain.

How do healthcare providers diagnose leptomeningeal disease?

Healthcare providers diagnose leptomeningeal disease with magnetic resonance imaging (MRI) of your brain and/or spine, as well as performing a spinal tap (lumbar puncture) to obtain cerebrospinal fluid that they can examine for the signs and presence of cancer cells. Sometimes, an MRI can appear normal if the tumor spread is only microscopic, which can make it challenging to diagnose.

Is there a cure for leptomeningeal disease?

Unfortunately, healthcare providers aren’t able to cure this condition. Instead, they focus on ways of slowing down the spread of cancer and easing symptoms. Treatments vary based on the kind of cancer that spread to your cerebrospinal fluid and leptomeninges, where the cancer is located and your overall health. Some common treatments include:

• Radiation therapy:Radiation therapy may ease some symptoms and help improve neurological function.
• Chemotherapy: Depending on the type of cancer and treatment options, healthcare providers may use anticancer drugs. These can be oral, intravenous, or given through ventricular access directly into your cerebrospinal fluid.

Can I reduce my risk of developing leptomeningeal disease?

Unfortunately, there aren’t any ways to reduce the risk of leptomeningeal disease.

How long can you live with leptomeningeal metastases (leptomeningeal disease)?

Leptomeningeal disease is a significant complication of advanced cancer. That means people who develop this condition are already in the more serious stages of cancer. In general, people who receive treatment for this condition live between three to six months after diagnosis. People who don’t have treatment live for about a month after diagnosis. That said, every person’s tumor and situation are unique. Your healthcare provider is your best resource for information about your situation.

How do I take care of myself?

If you have leptomeningeal disease, it’s important that you have a clear view of your prognosis. Leptomeningeal disease is a serious complication of advanced or late-stage cancer and can’t be cured. Ask your healthcare provider what you can expect, given your specific situation. That way, you can set priorities such as managing your symptoms so you’re as comfortable as possible.

These aren’t easy conversations for you or your healthcare provider, but they’re important. Your healthcare provider can help you understand what’s happening to your body and what might happen. They can help you to think about your options and suggest helpful resources.

I have leptomeningeal disease. Should I consider hospice care?

Hospice care helps people who have advanced, life-limiting illnesses to spend their final days comfortably, with dignity, control and quality of life. When people are fighting a serious illness, their time and energy often focuses on treatment. Thinking about hospice shifts the focus from illness to how they want to spend the time they have. By talking with your healthcare provider and learning about how leptomeningeal disease is affecting your life, which treatments are available for your specific cancer type, and what you can expect from treatment itself, you’ll have more information to make the best decision possible for you as a team.

A note from Cleveland Clinic

If you have leptomeningeal disease, it’s likely that you have been living with some form of advanced cancer — cancer that’s growing throughout your body despite treatment. It may be devastating to learn your growing cancer has caused a serious complication for which there isn’t a cure. You may feel angry that after all you’ve gone through, you have another form of cancer that’ll likely affect your quality of life. You may feel frightened or you may feel overwhelmed and not sure what to do. If this is your situation, ask your healthcare provider for help. They understand what you’re going through and will be glad to help you in any way they can.