What is de novo metastatic breast cancer?

De novo metastatic breast cancer is breast cancer that has already spread outside the breast to distant areas of the body, such as the bones or liver, by the time it is first diagnosed. This is stage IV breast cancer. If you’ve never had breast cancer in the past and your first diagnosis is stage IV, you have de novo metastatic breast cancer. While stage IV disease is not curable, it is treatable.

Having stage IV breast cancer means being in treatment for life. Unlike for earlier stages of breast cancer, the goal of treatment for metastatic disease is not to cure it, but to control the cancer for as long as possible while managing the side effects of treatment so that you can have the best quality of life possible. This can mean treatments to shrink tumors or weaken the cancer and to relieve symptoms and side effects in the most effective way.

Most people diagnosed with metastatic breast cancer have early-stage disease first. In fact, only about 3 to 6 percent of newly diagnosed breast cancers are de novo metastatic.

Learning you have de novo metastatic breast cancer as your first diagnosis can be very overwhelming. Not only is the diagnosis itself scary, but you don’t have the benefit of past experience with breast cancer treatments to have a sense of what comes next. We’re here to help you through this. Below, we explain why de novo metastatic breast cancer can happen, what treatments are available, and ways to cope emotionally as you transition from life without cancer to living long-term with it.

If you’d like to talk to someone like you about their experience, we encourage you to contact the LBBC Breast Cancer Helpline to be matched with a trained volunteer. You can also learn about other resources, including support groups and LBBC private Facebook groups, on our Finding support page.

Why de novo metastatic breast cancer occurs

There is no known biological reason that some people are diagnosed with de novo metastatic breast cancer. When a person is diagnosed de novo metastatic, there is often evidence of cancer cells in the breast that were not detected or treated before spreading outside of the breast.

Risk factors

Risk factors for de novo metastatic breast cancer are the same as risk factors for breast cancer of any stage. While some risks cannot be controlled, others can.

Risk factors that cannot be controlled:

• Being born female
• Getting older; risk increases after age 55
• Family history of breast cancer
• Inherited gene mutations, such as BRCA1 or BRCA2
• Having Ashkenazi Jewish heritage
• Previous radiation therapy to the chest
• Having dense breast tissue
• Starting menstrual periods early
• Going through menopause after age 55
• Never carrying a pregnancy
• Carrying your first pregnancy after age 30
• Exposure to diethylstilbestrol (DES, a drug used in the 1940s through the early 1970s to lower risk of miscarriage)

Risk factors that can be controlled:

• Lack of exercise
• Postmenopausal weight gain
• Drinking alcohol
• Taking certain kinds of hormone replacement therapy (not the same as anti-estrogen therapy for breast cancer) after menopause for more than 5 years

People more likely to be diagnosed with de novo metastatic breast cancer

There are certain groups of people who are more likely to be diagnosed with de novo metastatic breast cancer than others, because of factors that are often very challenging or not possible to control. These groups are:

• Women from low-income geographic areas. Research shows that women from high-poverty areas have a higher rate of being diagnosed with higher stages of breast cancer, because for these women:
  • There is a lower likelihood of having a regular healthcare provider, which means getting breast cancer screenings less frequently.
  • There is less access to education and to breast cancer information on prevention and early detection.
  • There is less likelihood of having private health insurance. Not having health insurance can make treatment unaffordable.
  • There are other barriers to getting healthcare, such as unreliable transportation and being unable to take time off of work for treatment.
• Black women. A 2018 study found that Black women were more likely than white or Hispanic women to be diagnosed with de novo metastatic breast cancer.
• Older women. In a 2018 study that used data collected by the Surveillance, Epidemiology, and End Results program (SEER), researchers found that women age 60-69 had the highest number of de novo diagnoses.

People who are not in the above groups can also be diagnosed with de novo metastatic breast cancer.

Symptoms

Whether you’ve been diagnosed with de novo metastatic breast cancer or metastatic breast cancer that is a recurrence of an early-stage breast cancer, symptoms can include:

• Severe fatigue
• Weight loss
• Nausea
• Vomiting
• Generally not feeling well
• Pain that doesn’t go away
• Loss of appetite

Because breast cancer cells can spread to any part of the body, the symptoms you experience usually show up in the area where the cancer spread. For example, back pain or joint pain can be symptoms of metastatic breast cancer to the bone, while shortness of breath and difficulty breathing can be symptoms of metastatic breast cancer to the lungs. This also means that the symptoms you have can be very different from the symptoms someone else experiences.

Diagnosis

De novo metastatic breast cancer is diagnosed using the same tools used to diagnose other types of breast cancer. Doctors use a mix of imaging tests, blood tests, and a biopsy to confirm cancer. Depending on the area of the body being tested, you may need:

• A checkup with your primary care physician, who may refer you to a specialist if they are concerned about your symptoms
• Imaging tests to look at parts of your body for signs of cancer, such as MRIs, CT scans, bone scans, x-rays, or PET scans
• Blood tests, which look at how well the liver and kidneys are working, and complete blood counts, which look at how many red and white blood cells are in your blood
• A biopsy, a procedure to collect tissue samples to test for cancer cells

To learn more, visit our page on tests that can help diagnose metastatic breast cancer.

Treatment options

Your treatment for de novo metastatic breast cancer will be based on several factors, such as where in the body the cancer cells have spread and specific characteristics of the cancer cells.

Breast cancer cells can have different features that determine the kinds of treatments your care team may recommend. The cells can be:

• Hormone receptor-positive, which means that the cancer cells grow in response to the hormones estrogen or progesterone, and can be treated with hormonal therapy
• HER2-positive, which means that the cancer cells have higher-than-normal levels of a protein called HER2, causing the cells to grow quickly, and can be treated with HER2-targeted therapies
• Triple-negative, which means the cancer is not growing because of hormones or the HER2 protein, so different treatments, such as immunotherapy, chemotherapy, and targeted therapy, may be used

For people who test positive for a BRCA1 or BRCA2 mutation and are diagnosed with hormone receptor-positive, HER2-negative breast cancer, or triple-negative breast cancer, PARP inhibitors may be a treatment option. These targeted therapies stop an enzyme in the body known as poly (ADP-ribose) polymerase, or PARP, from repairing cancer cell DNA. Cancer cells in people with BRCA mutations already have a hard time repairing their own DNA. PARP inhibitors make it even harder, and can cause the cancer cells to die.

The most common places for breast cancer to spread include the bones, liver, lungs, and brain.

Because treatment options are based on the characteristics of the breast cancer and the location of spread, your plan will be highly individual to your situation. Other people living with metastatic breast cancer may have different treatment plans. And compared with early-stage breast cancer treatments, metastatic breast cancer treatments may not seem as aggressive. This is because early-stage treatment happens over a shorter period of time, and the goal is to get rid of all the cancer. Treatment for metastatic breast cancer works to control the cancer for as long as possible, while helping you live with as few treatment side effects as possible.

Your treatment plan may change over time as the cancer adapts and builds resistance to medicines. Usually, a treatment is used until the cancer grows or spreads to a new part of the body. Treatments may also change if side effects are interfering with your daily activities and quality of life. Sometimes, a treatment is used for many months or years, and other times, a treatment might need to change after a shorter period. Always let your care team know how you’re feeling and any side effects you’re experiencing. If it looks like a new treatment may be needed, you and your care team will talk about options to try.

Treatment options for metastatic breast cancer include:

• Hormonal therapy. Hormonal therapies are medicines that block or lower estrogen that helps hormone receptor-positive breast cancer to grow. These medicines are only given to people diagnosed with hormone receptor-positive breast cancer.
• Targeted therapy. Targeted therapies are medicines that target certain characteristics or behaviors of cancer cells to stop or slow the growth of the cancer. Targeted therapies can also target processes in the body that help cancer cells grow. These medicines are only offered to people with hormone receptor-positive, HER2-positive breast cancer, or both.
• Chemotherapy. Chemotherapy is a type of medicine that destroys or slows the growth of rapidly dividing cells throughout the body, including cancer cells.
• Immunotherapy. Immunotherapy uses the body’s own defense system to recognize and destroy cancer cells.
• Surgery. While most people with metastatic breast cancer do not need surgery, in some cases it can be used to ease symptoms such as pain, fractures, or bleeding.
• Radiation therapy. Radiation can be used to relieve bone pain, prevent or ease symptoms of brain or lung metastases, and treat issues of the spine caused by bone metastases.
• Palliative care. Palliative care focuses on helping people with serious illness to manage side effects and to feel more physically and emotionally supported.

Learn more about treatment options for metastatic breast cancer.

How to cope

Learning you have de novo metastatic breast cancer when you’ve never had breast cancer before can be a shock to the system. Anxiety, sadness, anger, and numbness are all normal feelings to have in a situation that may feel anything but normal. There’s no right way to feel. Feelings may change from day to day. And while metastatic breast cancer is not considered curable, it is treatable — and it is still possible to continue living a life that makes you feel fulfilled.

We know that balancing overwhelming emotions with the practical needs of treatment planning can sometimes feel impossible. But you don’t have to do this alone or without help! There are many ways to feel more supported and connected. We’re here for you with information about:

• Talking with close family and friends
• Trying complementary therapies
• Learning strategies for coping with breast cancer
• Finding support
• Joining a breast cancer support group
• Maintaining intimacy and sexuality
• Getting active

It’s OK if it takes you a while to find something that helps you feel calm and centered, and if you need to try different things before you decide what works for you — this is your experience, and your life. You are the only person you need to satisfy when it comes to living with metastatic breast cancer.

We encourage you to call our Breast Cancer Helpline to be matched with a trained volunteer who is also living with metastatic breast cancer. Our volunteers are available to talk with you and offer guidance, emotional support, and hope.