De novo metastatic breast cancer (also known as Stage 4 breast cancer) is a relatively rare breast cancer. It is generally considered incurable as it has already spread to other parts of the body at the time of diagnosis. However, advances in treatment options can improve and prolong the lives of patients.

According to the American Cancer Society, de novo metastatic breast cancer (MBC) accounts for approximately 6% of cases of U.S. women diagnosed with breast cancer.

Symptoms of De Novo Metastatic Breast Cancer

Symptoms of de novo metastatic breast cancer can vary by individual. Generalized symptoms may include fatigue, unintentional weight loss, loss of appetite, nausea, vomiting, insomnia, depression, sexual dysfunction, and pain.

What Is De Novo?

“De novo” indicates that the cancer is the first diagnosis, not a recurring cancer.

The signs and symptoms may depend on which areas the cancer has spread to. The most common site of metastasis (where the cancer has spread) for de novo MBC is the bones (40%–75% of patients), while the least common site is the brain (less than 5%). Over time, 75% of patients will develop metastases to other organs in addition to when they are first diagnosed.

If you have had these symptoms for some time, speak with your doctor so they can help you figure out the cause of your symptoms and make a diagnosis.

Here is a chart describing the associated symptoms with each possible site of metastasis:

Causes

Many patients that are diagnosed with this cancer have been negatively impacted by social determinants of health, which are conditions in a person’s environment that interfere with health treatment and outcomes. For various reasons, they may not have access to high-quality healthcare and preventive services, are uninsured, or live in rural areas.

Other reasons that patients may be diagnosed with de novo MBC is if they delay seeking medical care despite experiencing symptoms of breast cancer. A 2019 study showed that the top reasons that women delayed seeking treatment include:

  • Dependents/other pressing mattersEmployment responsibilitiesTransportation costs and difficultyFear of not being able to afford treatment

While the exact cause of de novo MBC is unknown, potential risk factors for breast cancer in general include:

  • Increasing age and being born female (these are the top risk factors)
  • BRCA1 or BRCA2 gene mutations
  • Personal or family history of breast cancer
  • History of certain tumors or breast conditions
  • High-dose radiation to the chest at a young age
  • Menstrual periods that start early in life and/or end late in life
  • Not having children or having children after age 30
  • High levels of estrogen or testosterone hormones
  • Recent use of hormonal contraceptives
  • Overweight or obesity
  • Undergoing hormonal therapy
  • Drinking alcohol
  • Physical inactivity

Diagnosis

De novo metastatic breast cancer is diagnosed through screening and tests of the breasts and for metastases. The primary tumor may be diagnosed by physical exam and confirmed by biopsy (removing a sample tissue for laboratory testing) and MRI or other imaging techniques.

Further tests may be conducted to determine where the cancer has spread. Screening and tests may differ based on what symptoms are present and the likely site the cancer has metastasized to. Paying close attention to any symptoms and changes in symptoms can help your doctor determine the appropriate screening tools to confirm a diagnosis.

Treatment

The fact that de novo MBC can be spread to any organ and body system means that a systemic treatment approach is needed. Treatment will be tailored according to the specific metastatic location. For example, Xgeva (denosumab) may be added to the treatment scheme for bone metastases.

As always, method of treatment depends on the goals of the patient and family. The goals of care must balance potential control of cancer while managing symptoms and maintaining the highest quality of life.

Cancer Control

There is some controversy over whether patients should have surgery for de novo MBC. In one study, surgery significantly improved the overall five-year survival rate for patients. However, it is unclear if the surgery provided the benefit.

Unless the tumor is causing the patient a great deal of physical discomfort, surgery is generally not recommended for patients with de novo MBC since the cancer cells have already spread to other parts of the body. Generally, surgery for patients with de novo MBC has declined over the years.

Depending on where the cancer has spread to, systemic treatments may be recommended, including hormone therapy, chemotherapy, targeted therapies, and immunotherapy. While some families may desire the continuation of anticancer treatment, it’s important to continue communicating with the patient and assessing the situation.

Despite the number of patients who continue to receive anticancer therapy toward the end of life, there is often no benefit to survival of continuing systemic treatments two weeks before the end of life. Sadly, many patients who continue receiving chemotherapy (cancer-fighting drugs) toward the end of life generally delay palliative care (symptom relief) and hospice (end-of-life care) and are only admitted within three days of death.

Symptom Management

There are many strategies for managing symptoms. It’s important to accurately describe the symptoms to your doctor so that you can be treated accordingly. This includes describing the type of symptoms, the location and duration of pain or other symptoms, and how they interfere with your daily life. Managing symptoms can help a patient prolong the best quality of life throughout the duration of treatment and when treatment is discontinued.

Here is a chart describing some of the most commonly reported symptoms and management strategies:

Prognosis

While de novo metastatic breast cancer is generally considered incurable, the prognosis has improved significantly with advances in treatment options. Unfortunately, it is unclear which treatment patterns or factors, independently or combined, has the best prognosis. Generally, the goal of treatment for de no novo MBC is to improve and prolong quality of life.

Many studies researching what may impact prognosis are conflicting and inconclusive. Possible factors that may contribute to impact overall survival rate (OS) include:

While the prognosis continues to be poor, over the past few decades, the overall five-year survival rate has increased from 20% to 40%.

  • Presence of hormone receptor positive and HER2+ tumors improve OSSurgical removal of the primary tumor improves prognosis for some womenHigher socioeconomic status improves OSEthnicity (Asian women have higher OS, African American women have lowest OS)Older age decreases OSLack of insurance decreases OS

More research is needed to understand the best treatments and factors that may influence prognosis for de novo MBC.

Coping

Patients diagnosed with de novo metastatic breast cancer may experience many concerns that require social, psychological support, support groups, and counseling. These normal and common concerns include:

  • Fear of dyingDeclining quality of lifeDistressing side effects of treatmentDecreasing physical ability and the ability to care for familyInability to maintain relationshipsDisagreement with family about care at the end of life

It is critical to have ongoing conversations with the patient and patient’s family to ensure these social and psychological supports are met and to help families navigate through a very difficult time.

A Word From Verywell

Receiving any cancer diagnosis can be surprising, distressing, and devastating, especially an advanced stage cancer.

Your healthcare team can help connect you and your family with social and psychological support systems to help you through your diagnosis, treatment, and any end-of-life decisions.

If you’ve been diagnosed with de novo breast cancer, speak with your healthcare provider to discuss your options moving forward. You may also want to discuss your plan with family, therapists, or other professionals before making decisions. You should continue to monitor your symptoms and update your healthcare team on any changes you experience.

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By Rebecca Valdez, MS, RDN

Rebecca Valdez is a registered dietitian nutritionist and nutrition communications consultant, passionate about food justice, equity, and sustainability.

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