Community Shares: Were You Diagnosed De novo or Recurrence?

A metastatic breast cancer diagnosis is always a shock. No matter how the diagnosis comes about, it is overwhelming.

Recently, we were curious about what our community members would reveal about the process of their diagnosis. We asked followers of our Facebook page to tell us: “Were you diagnosed: de novo or recurrence?”

Recurrence, de novo, metastatic – what does it all mean?

Before we delve into what you had to say, what exactly do de novo, recurrence, and metastatic mean? For some, these can be unfamiliar terms.

Metastatic breast cancer (MBC) is when breast cancer cells spread to other parts of the body. Most commonly, MBC occurs in the bones, brain, liver, and lungs. MBC is not bone cancer or lung cancer but breast cancer that has spread to those areas.¹

Some people are first diagnosed with MBC when breast cancer is detected. This is de novo metastatic breast cancer. De novo comes from Latin meaning, “from the new” or “from the beginning.”^1,2

Others are diagnosed with MBC as a recurrence of breast cancer. Often, this means a person is first diagnosed in an earlier stage. After a period of time in remission following treatment, the cancer comes back as metastatic.

By the numbers

We had 37 responses from our Facebook community. The responses broke down as follows:

• 25 de novo, or about 67 percent
• 12 recurrence, or about 32 percent

Interestingly, our responses were opposite of the national statistics, which show³:

• 6 to 10 percent of new breast cancer cases are de novo
• 20 to 30 percent of all breast cancer cases will become metastatic

This leaves roughly 60 percent of breast cancer cases that do not become metastatic.

Nationally, cancer that returns at the metastatic level is more common than being diagnosed de novo.³

Recurrence

There is no set amount of time between an initial breast cancer diagnosis and the recurrence of MBC. It can vary greatly, as evidenced from the responses to our question posted on Facebook.

“Four and a half years after the first round of breast cancer. Now it’s in my bones, so treatment for the rest of my life.”

“Recurrence, 7 years later, then 2 years later, and now 10 years later.”

“Recurrence exactly 2 years later.”

“Recurrence. 10 years, 4 months, and 3 weeks later. But who’s counting? Thought for sure I was safe…”

De novo

Likewise, diagnosing de novo happens at any time, at any age. The Facebook prompt revealed a range of experiences.

“De novo after 2 weeks of being misdiagnosed and treated for severe pneumonia. What I really had was a collapsed lung and cancer covering both lungs.”

“De novo at 33 years old.”

“De novo right after my 50th birthday.”

We extend our deepest thanks to all who shared your experience of being diagnosed with MBC. Recurrence or de novo, we are all on in this together. We are grateful you choose this community to be part of your support system.