A diagnosis of metastatic breast cancer is one of the most challenging experiences many people will ever face. Coping with the emotional stress of a cancer diagnosis and managing the responsibilities of family, work, or day-to-day tasks may seem overwhelming at first. But you’re not alone. As many as 86,000 women are diagnosed with mBC each year in the U.S., according to the Side-Out Foundation.

With significant advances in treatment for mBC, people with this diagnosis are living longer than ever. If you’ve recently been diagnosed with mBC, here are some important facts and the first steps you’ll be taking on this journey.

What Is de Novo Metastatic Breast Cancer?

A diagnosis of de novo mBC means that it’s a first diagnosis of breast cancer and it’s stage 4, or metastatic — breast cancer cells have spread to another area of the body outside the breast, most commonly the liver, lung, brain, or bones.

About 6 percent of women diagnosed with mBC have a de novo diagnosis and are experiencing breast cancer for the first time, per the journal Frontiers in Oncology. Metastatic breast cancer more frequently appears as recurrent cancer — cancer that returns after treatment and remission — in those who have previously been diagnosed with early-stage breast cancer. Stage 4 breast cancer is considered advanced cancer.

A new diagnosis of advanced breast cancer that has also been detected in another part of the body can be extremely unsettling, as MyBCTeam members have expressed.

“Just recently diagnosed with stage 4 metastatic breast cancer with metastasis to my femur. Totally in shock. Had no idea until my leg broke,” a member shared.

“Stage 4 metastatic spread to lymph nodes. One more PET scan to rule out other possibilities. I’m 47 years old, three adult kids, three grandbabies. It’s really hard,” another member wrote.

Although mBC isn't curable, there are treatment options that can increase years and quality of life. In recent decades, the median overall survival for women with de novo mBC has increased to 26 months. (The median overall survival is the average life span of a group of people facing the same medical situation.) It’s important to note that approximately one-third of women in the U.S. with mBC live five or more years after being diagnosed, according to the Susan G. Komen organization. Some have lived more than 10 years.

Here’s what you can expect if you’ve been newly diagnosed with mBC.

You and Your Oncologist Will Discuss Treatment Options

Your medical oncologist will review your diagnosis and details about your particular type of mBC and recommend which treatment options may be appropriate for you. The goal of mBC treatment is to reduce the size of tumors, prevent cancer from spreading further, and help manage and relieve symptoms. Treatment may continue long term, even for the rest of your life.

Treatment of mBC can prolong life and help people feel well as long as possible with minimal side effects. Because mBC affects the breast and other parts of the body, treatment plans can vary among individual cases of mBC. For instance, if breast cancer spreads to the lungs, some treatment options may specifically target cancer growth in that area. There are also different types of breast cancer, which may affect your treatment options. Your doctor may want to do additional blood tests or biopsies to learn more about your cancer.

Newer options for mBC treatment are showing improved outcomes by slowing the progression of cancer in some people, and people with de novo mBC have been found to have higher overall survival than those with recurrent mBC. A recent study in the journal Breast Cancer Research and Treatment found that people with de novo mBC had progression-free survival (time without further disease progression) that was more than two years, more than twice as long as those with recurrent mBC.

Treatment options may include:

• Chemotherapy, usually administered intravenously (IV, through a vein) in a medical facility or cancer center, to kill cancer cells
• Hormone-blocking therapy, administered orally or by injection, to prevent cancer cells from accessing hormones they need to grow
• Targeted gene therapy, administered orally, by injection, or by IV infusion, to prevent cancer cells from growing and spreading by attacking gene mutations
• Immunotherapy, administered by IV infusion, to help the immune system fight cancer
• Radiation therapy, administered by X-ray and other devices, to destroy cancer cells

If you’re interested in getting access to new treatments, you can ask your oncologist about clinical trials, which are studies that test new medications or treatments. Clinical trials can help test new drugs that aren’t yet available to the public.

Palliative Care

Be sure to talk to your doctor about palliative care, or palliative medicine, which is treatment that focuses on your physical and mental comfort. Palliative care is an approach to treatment that works with the rest of your medical team to help relieve symptoms and reduce the stress that comes with a serious illness such as mBC. Palliative care specialists can also help you navigate the health care system. Many oncologists work with palliative care teams or can refer you to a specialist in this field.

Consult Your Doctor for Treatment Risks and Benefits

All medical treatments, even drugs sold over the counter, have a risk of side effects. It’s also important to know that treatments don’t always work as intended. Your doctor will discuss the risks and benefits of each treatment option in the context of your prognosis — the likely course of your disease — so that you can make an informed decision about treatment based on your preferences and priorities.

Your doctor knows that these are complex decisions and will give you time to think about treatment options and answer questions in a follow-up visit. You can also decide if you want a second opinion about treatment from another oncologist.

One MyBCTeam member wrote about their priorities with mBC treatment. “When I was diagnosed with metastatic breast cancer, I chose to be treated with quality of life as the goal, not longevity. But each case is different,” they said.

Another member described the ups and downs of their treatment. “Today is one year since my stage 4 de novo diagnosis. I’m pleased to be feeling good enough to go back to work and enjoy my new grandbaby! Been on [combination targeted therapy] every three weeks and 13x brain radiation,” they wrote. “Fatigue and body pain are the biggest side effects. I’m always trying to be positive and strong but having a hard time lately.”

A member who takes care of their spouse with breast cancer said, “My wife has been stable on [a chemotherapy] for the past eight months. It has been one year and seven months since being diagnosed with de novo stage 4. She had a bone metastasis and a lung metastasis that are both now undetectable. The treatment is brutal to her hands and feet, but overall, we can’t complain. Leaving for a trip on Friday. Nice for her to get a break from all the poking and prodding.”

Surgery Is Less Common With Metastatic Breast Cancer

People with early-stage breast cancer are commonly treated with surgery as part of their treatment to remove cancerous tissue. This may involve breast-conserving surgery (partial removal of the breast) or mastectomy (complete removal of the breast).

Surgery for breast cancer is less typical once it has spread and become metastatic disease. Systemic therapy — drugs that circulate throughout the body — have been considered the mainstay of mBC treatment. Surgery is sometimes recommended as palliative care if it can help relieve unpleasant symptoms, or if the cancer has spread to the liver and tumors are causing problems in liver function.

However, some oncology research has shown that local treatment of the breast, including radiation therapy and surgical removal of primary cancer tumors in the breast, may increase overall survival in some people with de novo mBC. Younger people, in good overall condition, have fewer tumors, and with hormone receptor-positive breast cancers may benefit from surgery. You’ll want to discuss the potential benefits and risks of surgery with your doctor.

Managing Your Health Will Take Adjustment

A new diagnosis of mBC will affect your life in many ways. Make sure to give yourself the emotional space and time you need to move forward.

To start, you’ll want to get organized with paperwork such as medical information, health insurance, medication schedules, doctors’ visits, and questions you have for your health care team. You may want to dedicate a journal or calendar specifically for your cancer care. It’s also a good idea to find a place such as a file box or night stand to keep the literature your doctor gives you so that you don’t lose track of it and it’s easy to access.

Doing your own research can also help you feel more confident about your treatment decisions. You may collect additional research materials that can be stored with other information you get from your health care providers.

Reach Out for Help

You may have cancer symptoms such as fatigue or pain that make daily activities more difficult. Reach out to family members, close friends for support, or spiritual advisers. Loved ones often want to help but may need guidance on what to do. Think about specific ways someone can help with children, chores, errands, going for a walk with you, or accompanying you to medical appointments.

Talking openly with your family about how you feel can help ease any anxiety you may have about sharing family responsibilities and possibly needing more help than usual. In-person or online support groups like MyBCTeam can provide a safe space for sharing your feelings and experiences with others in a similar position. Many people — especially mothers — find it hard to take time for themselves, but self-care is also important.

“I have stage 4 metastatic cancer that has spread to my liver,” a MyBCTeam member wrote. “So much has changed. I’m very tired too! Some days, I’ll sleep until 2 p.m. I feel guilty, but if my body needs it, I’ll do it! Our bodies are fighting for our lives.”

Talk With Others Who Understand

MyBCTeam is the social network for people with breast cancer and their loved ones. More than 68,000 members come together to ask questions, give advice, and share their stories with others who understand life with breast cancer.

Were you diagnosed with de novo metastatic breast cancer? What advice would you give others with a new diagnosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.