Frequently Asked Questions

Metastatic breast cancer or MBC originates from breast tissue. When breast cancer spreads to another part of the body like the lungs, liver, brain, or bones, it is referred to as metastatic breast cancer, or stage IV breast cancer. Even when the disease spreads to locations outside of the breast, it is still breast cancer, because the breast is where the cancer originated.

The central nervous system or CNS is comprised of the brain and spinal cord. Metastasis from breast cancer to the central nervous system most commonly occurs as brain metastasis, but can also become leptomeningeal disease, which is metastasis to the lining of the brain and spinal cord. Brain and leptomeningeal metastasis are collectively referred to as CNS metastasis.

It is common for different types of doctors to work together to create a patient’s overall treatment plan. This is often referred to as a multidisciplinary team. The team can include a medical oncologist, surgeon, radiologist, neuropsychologist, and a neurologist. Nurse practitioners, oncology nurses, social workers, pharmacists, nutritionists, rehabilitation specialists, and others can also be part of your team. Check out the interviews with experts in the field of medical oncology, neuro-oncology, radiation oncology, and neurosurgery to learn about the roles that each type of medical specialist provides.

• What kind of treatments are available to me?
• What can you tell me about my brain tumor type and will this influence my treatments?
• Am I eligible for radiation or surgery?
• How many patients with metastasis like mine in the brain or leptomeninges do you treat annually?
• Have you been involved with or led any clinical trials that are focused on brain or leptomeningeal metastasis?
• Do you have any ongoing clinical trials that may benefit me and for which I may qualify?

Once a diagnosis of brain metastasis or leptomeningeal disease is confirmed, it is important to consider all of your treatment options, taking into account your personal preferences and the goals of your treatment. Take the time to understand as much as possible about your treatment options and expect your oncology team to take the time YOU need to understand and be comfortable with your decision. Following is a list of questions suggested by the American Brain Tumor Association:

• What are the risks and benefits of each treatment?
• What are the common side effects?
• How might my treatment affect my daily activities or my quality of life?
• How do you determine if the treatment is effective? What follow-up tests can I expect?
• What are the differences between whole brain radiation (WBRT) and stereotactic radiation (SRS)?
• What are the cognitive side effects of each radiation treatment and how can they be minimized?
• Is surgery recommended? If so, what are the risks of removing the tumor? What is the recovery time like after surgery?
• Am I a good candidate for the laser interstitial thermal therapy (LITT) procedure?
• Would a clinical trial be a reasonable treatment alternative?

For patients with brain metastasis or leptomeningeal disease, a second opinion from a medical or neuro-oncologist with specific experience treating breast cancer in the central nervous system (CNS) can be extremely valuable and can help guide treatment decisions. When getting a second opinion, the doctor may order additional tests or scans to confirm your diagnosis and will suggest a treatment plan.

Treatment planning for patients with CNS metastasis can involve multiple specialties that may not be available locally. Second opinion doctors can collaborate and consult with your local oncology team, or they can replace your oncology team if they are a better fit for you. Ideally, specialty cancer programs will work in a collaborative fashion, providing expertise at times of treatment decisions, and staying in close communication with your local oncology team.

Check out our curated list of National Cancer Institute (NCI)-designated cancer centers with programs dedicated to the treatment of CNS metastasis.

Another possible way to find a second opinion is to ask your doctor. Second opinions are a normal part of cancer care and your local doctor should not be offended. They may even suggest a second opinion doctor. You can also seek ideas through friends, patients, social networking groups, and advocacy organizations. You can also check out a list of the National Comprehensive Cancer Centers (NCCN) to find a center near you. These large cancer centers routinely provide second opinions and are likely to have expertise in brain metastasis. The American Brain Tumor Association maintains a searchable list of brain cancer treatment centers with expertise treating brain tumors by state.

Clinical trials are a required step in bringing new breakthroughs to the forefront of cancer research and they advance care in ALL diseases. When you participate in a clinical trial, you are not only contributing to research that could bring about new treatments for other patients living with brain metastasis or leptomeningeal disease, but you are also gaining access to novel and cutting-edge treatments that could effectively stop your cancer from growing and save your life!

Clinical trials will always include the standard of care and often include something in addition. They can include a single mode of therapy, like chemotherapy, or a combination of therapies, like chemotherapy and radiation therapy. New therapies are approved based on the results of clinical trials, and patients are often able to gain access to promising therapies in a clinical trial before they are approved as standard of care. Despite the benefits of participating in a clinical trial, only 40% of available trials reach their accrual target.

Asking about which clinical trials would be a good match for your cancer is an important question for your oncology team. Learn more about ongoing clinical trials for breast cancer brain metastasis and leptomeningeal disease. You can find trials using our patient-friendly trial search designed specifically for patients with brain or leptomeningeal metastasis from breast cancer.

• Why are you recommending this trial for me?
• What is the main purpose of this study?
• Does the study involve a placebo or a treatment that is already on the market?
• How will I receive the treatments?
• What are the known side effects?
• Is there existing data on the success of the trial or its benefits?
• Where is the location of the clinical trial?
• What is the time commitment? How frequently do I need to travel to my cancer center?
• What are the costs involved in participating in this trial? Is there any reimbursement for travel costs or childcare? Will my insurance cover these costs?
• Will I need to switch doctors?
• How is my progress monitored and how long will I be on the trial?
• If the treatment works for me, can I keep using it after the study?
• Will I receive any follow-up care after the study has ended or if I choose to leave the trial?
• What will happen to my medical care if I stop participating in the study?
• When and how will I receive the results of the clinical trial?
• Is there another patient I can talk to that has been on this trial?

Palliative care is provided by a special team of doctors, nurses, social workers, and other specialists who work together to provide an extra layer of support beyond simply keeping the patient alive. Palliative care specialists can help patients get relief from symptoms that include pain, fatigue, depression, nausea, and much more. Any patient living with metastatic disease, regardless of their site of metastasis, should talk to their treating physician about being connected to a palliative care team. Patients can still receive chemotherapy while also receiving palliative care services. To learn more, listen to Part 1 and Part 2 of the Our MBC Life podcast series on palliative care.

When dealing with a complex diagnosis, many patients find it helpful to seek support from professionals such as therapists, social workers, or counselors, as well as from other patients who have experience managing breast cancer that has spread to the brain or spinal cord. There are many resources to patients living with breast cancer. Your local hospital may have supportive resources, like webinars, workshops, or support groups that are worth learning about. Local and national organizations may offer emotional support, financial support, or support with transportation, food, or housing. Social media can also be a helpful source of support and information, especially for patients who like the convenience of not having to leave their home.

Check out our list of resources that can help you connect with organizations that offer support and with patients that have experience living with brain metastasis or leptomeningeal disease.

Hear from other patients living with brain or leptomeningeal metastasis about their experiences with treatments, clinical trials, and more.

There are many resources to help you stay current on treatments, clinical trials, and other information for breast cancer patients living with central nervous system metastasis including brain metastasis and leptomeningeal disease. Resources may include cancer podcasts, scientific articles and journals, and social media.

Brain metastasis refers to cancer that has spread from its original site to the brain. Any cancer can spread to the brain, but the types most likely to cause brain metastasis are breast, lung, colon, kidney, and melanoma. Breast cancer brain metastasis or BCBM occurs when breast cancer cells have traveled through the bloodstream or the lymph system to take root in the brain. Brain metastasis may form one tumor or many tumors.

Breast cancer metastasizes (spreads) to the brain in about 15-20% of patients with metastatic disease. However, some factors put patients at higher risk. Risk factors for brain metastasis include hereditary mutations in the BRCA1 gene, prior metastases in other organs, and your subtype of cancer. Once a patient has been diagnosed with MBC, the chance of developing breast cancer brain metastasis varies and occurs in up to 25-50% of those with TNBC, approximately 30-50% of those with HER2+ breast cancers, and 14% in HR+ disease.

At this time, healthcare providers do not normally screen for brain metastasis before symptoms develop. Identifying brain metastasis early, when they are easier to treat, has not yet been shown in research studies to extend life. However there is increasing support from the patient advocate and medical communities to include brain imaging at the time of a MBC diagnosis, especially in patients at higher risk of developing brain metastasis. If you suspect you may have brain metastasis, ask your doctor about ordering a brain MRI.

Symptoms like headaches, dizziness, problems with balance, and difficulty speaking (among others) may suggest cancer has spread to the brain. When any of these symptoms persist for several days with no relief from over-the-counter medications, consult your oncology team. Many of these symptoms can have other causes, including side effects from chemotherapy or hormonal therapy, as well as environmental causes like stress, anxiety, and lack of sleep.

The answer will depend on many factors including your breast cancer subtype, age, and performance status. The overall survival for breast cancer patients with brain metastasis (all types combined) is now closer to just over 2 years, with a life expectancy of 3 years for those with HER2+ tumors.

It is important to remember that each patient is unique, and that statistics cannot possibly account for all the variations that exist in a person and their cancer. There are some patients who far exceed the averages provided above. We share the stories of several patients with brain metastasis who have lived well beyond what the statistics show.

Systemic treatments travel throughout the entire body, including the bloodstream, to target and kill cancer cells. Initial treatment decisions usually depend upon the size and number of metastases in the brain, and whether metastatic disease is present and under control outside of the brain. There are systemic treatment options for brain metastasis from HR+, HER2+, and triple negative breast cancer.