After hearing a diagnosis of metastatic breast cancer, a rush of questions emerges. But often, it's not until long after leaving the doctor's office.

Metastatic means the cancer has spread beyond the breast and immediate lymph nodes to other organs or tissues in the body, most often the bones, brain, lungs or liver. It's considered stage 4 breast cancer, which means the cancer has progressed to its most advanced stage.

But even though it's moved to other organs, it still behaves like breast cancer and is treated with breast cancer therapies.

More than 154,000 U.S. women are estimated to have metastatic breast cancer, according to the Susan G. Komen organization. Men can have metastatic breast cancer too, but it's rare.

To help patients fill in information gaps, N. Lynn Henry, M.D., Ph.D., the breast oncology disease lead for the University of Michigan Rogel Cancer Center, explains the nuances of stage 4 metastatic breast cancer.

What are the differences between metastatic breast cancer, stage 4 breast cancer and advanced cancer?

"Most of us use the names stage 4 and metastatic interchangeably," Henry says. "Advanced is a little more complicated. Sometimes you will see the word 'advanced' used to describe metastatic cancer. But sometimes you will see the term 'locally advanced.' That means there's a lot of cancer in the surrounding lymph nodes, but it doesn't necessarily mean we see cancer that has spread outside of the area. We tend to stay away from the word 'advanced' because there can be confusion."

If any doctor uses the term "advanced," ask for clarification, Henry adds.

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When does metastatic breast cancer appear?

Every patient is different. In most cases, it arises months or years after a person has completed treatment for the initial breast cancer diagnosis, Henry says.

But some patients will learn they have metastatic breast cancer when first diagnosed, a term known as de novo metastatic breast cancer, Henry says. Only 6% of women and 8% of men receive a de novo metastatic diagnosis, according to Komen.

What are the symptoms?

Metastatic disease symptoms are tricky because they vary depending on where the cancer cells have spread, Henry says. Some symptoms might be caused by side effects of medication or they might be an indication of depression. It's important to explore the cause.

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"I always encourage a patient with a history of breast cancer to call us if she has a new symptom, especially if it sticks around longer than expected," she says.

These are some common symptoms of metastatic breast cancer by site:

Symptoms of bone metastases:

• Severe, progressive pain
• Back, bone or joint pain
• Swelling
• Bones that fracture easily

Symptoms of brain metastases:

• Worsening headache or pressure to the head
• Vision problems (blurry, double vision or loss of vision)
• Seizures
• Loss of balance
• Vomiting or nausea
• Behavioral changes, confusion or personality changes

Symptoms of liver metastases:

• Jaundice
• Itchy skin or rash
• Abdominal pain, appetite loss, nausea and vomiting

Symptoms of lung metastases:

• Chronic cough
• Inability to draw a full breath
• Chest pain

What are the treatments?

Patients with metastatic disease are primarily treated with systemic therapies – drugs that work throughout the body. These include chemotherapy, targeted drugs and hormonal therapy. Surgery or radiation may be used to slow the growth or reduce the size of tumors.

Identifying optimal treatment depends on the specific type of breast cancer, specifically the hormone receptor status and the HER2 status of the cancer.

"There are many different types of breast cancer. Oncologists will conduct extensive testing of tumors, with sequencing, and look at specific findings to understand what the cancer might respond to best," Henry explains.

For example, patients with hormone receptor positive cancers are typically first treated with anti-hormone treatments such as an aromatase inhibitor or fulvestrant, often in conjunction with other targeted drugs. Those with HER2-positive cancer will receive Herceptin or other treatments directed against HER2 as part of treatment. In addition, women with a BRCA gene mutation may receive a PARP inhibitor as part of their treatment.

"More and more treatments are being developed and approved, so we have many more options for treatment now than we did just five to 10 years ago," Henry says.

Do men get metastatic breast cancer?

"Yes. But only about 1%-2% of all breast cancers occur in men, so the disease is not very common in men overall. But when it does occur in men, it can spread and become metastatic," Henry says.

What is the prognosis?

While there is no cure for metastatic breast cancer, there are treatments that slow the cancer, extending the patient's life while also improving the quality of life, Henry says. Many patients now live 10 years or more after a metastatic diagnosis.

"We are seeing improvements in how long people are living. The new types of medicines that are being approved treat the cancer and help with other symptoms. People are not only living longer, but they are also feeling better longer for the most part, which is very encouraging."

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How do clinical trials fit into the equation?

"I think clinical trials in general are very important, because almost every drug we have in practice right now, we learned about through a clinical trial," Henry says.

The Rogel Cancer Center always tries to have clinical trials available for all patients, no matter the stage.

"Ask your oncologist about the opportunity to participate in clinical trials, even if it hasn't been mentioned to you," Henry says. "It's one way to get access to new exciting drugs, which may be beneficial."

What if a patient sees the term "metastatic" on an online pathology report before seeing the oncologist? Does that mean they have stage 4?

"Because we have electronic medical records now, and everyone has fairly early access to documents like pathology reports, it can cause a lot of anxiety and be very confusing to a patient," Henry says. "Sometimes a pathology report may say 'metastatic to lymph node.' But that may not mean it is stage 4." It may simply mean the cancer has spread to an adjacent lymph node. Henry emphasizes that patients should talk to their doctor to understand their diagnosis.

What hope do you give patients with metastatic breast cancer?

"We have seen quite a number of medications approved in the last few years. And we know that there are more medications being reviewed by the FDA for consideration of approval in the next few years," Henry says. "It's an exciting time in oncology to have all these new treatments being developed.

"I always stress to patients that I want to do everything I can to help them live as long as they can, while still maintaining quality of life, allowing them to do the things they want to do. We do our best to make sure that we adjust treatment schedules to allow people to attend graduations or family reunions, or a trip they want to be able to take," explains Henry.

"We want to help them look forward."