Community Shares: De Novo and Recurrence in Advanced Breast Cancer

Any type of breast cancer diagnosis can be challenging and scary. For those diagnosed with de novo or recurrent advanced breast cancer, it can be an especially trying time.

What is metastatic breast cancer?

Advanced or metastatic breast cancer occurs when breast cancer cells spread to other parts of the body. In many cases of metastatic breast cancer, the cancer cells have spread to the brain, bones, liver, and lungs.¹

De novo vs. recurrence

Some people are diagnosed with de novo metastatic breast cancer. This is breast cancer that, when first diagnosed, has already spread to other parts of the body.

Others are diagnosed with metastatic breast cancer as a recurrence of breast cancer. This means they had been diagnosed with breast cancer once before and were treated for it. However, after a time in remission, the cancer came back as metastatic.

To find out more about your experiences, we reached out to community members. We asked followers of our Facebook page to tell us: “Were you diagnosed: de novo or recurrence?”

More than 70 people responded. Here is what was shared.

Newly diagnosed with de novo

Many women in the community shared that they had just recently been diagnosed with de novo metastatic breast cancer, which means that they are only beginning their journey. De novo breast cancer is not curable, but treatment can greatly improve quality of life and survival rates.

“May 2019, de novo, stage 4.”

“De novo, found September 2020 in the emergency room.”

Diagnosed with de novo more than 2 years ago

If your first diagnosis was metastatic breast cancer, it likely came as a huge shock. You may have felt overwhelmed as you were given new medical information, started treatments, and needed to suddenly adjust to an unfamiliar way of life.

“De novo, found December 2017.”

“De novo on December 2017, right after my 50th birthday.”

“De novo, March 30, 2017, after 2 weeks of being misdiagnosed and treated for severe pneumonia.”

Recurrence after just 1 or 2 years

Unfortunately, some women have a recurrence of breast cancer shortly after their initial diagnosis and treatment. Most people who have faced breast cancer are all too familiar with the lingering fears of recurrence and the uncertainty of wondering when the other shoe may drop.

“Recurrence. I am coming up on a year soon. I am doing well on my treatment. Wish it would work forever. It scares me that it only works for a while.”

“Recurrence 16 months later.”

“Recurrence exactly 2 years later.”

Recurrence after a decade or longer

For many women in the community, the risk of recurrence never fully goes away. Instead, many women shared that their breast cancer came back after a decade or longer. Part of living with advanced breast cancer is accepting that life now demands a new level of vigilance and care.

“Recurrence, 10 years, 4 months, and 3 weeks later.”

“Recurrence after 13 years.”

Thank you to everyone who shared their experiences with this story. We are grateful to hear from so many in the metastatic breast cancer community.