De Novo. Sounds fancy, right?
Like it’s French. Like croissant or decoupage. But it’s not French, like riding a bicycle along the streets with baguettes and a poodle. De novo in the breast cancer world is not quite as fancy.
The term de novo means from the beginning. In the metastatic breast cancer world, it means you were diagnosed as stage 4 right from the start. It isn’t a reoccurrence or progression from an early stage. The mets to other organs are there right at diagnosis, like the lesions found on my liver.
According to the Breast Cancer Research Foundation, only 6 to 10 percent of stage 4 diagnoses are considered de novo, making it rare. Although from personal experience, this does not reflect the number of Breasties that I have met who are diagnosed de novo.
Coming to Terms With a Different Path
When I was diagnosed, my oncologist had my chemotherapy lined up to start before my PET scan. I didn’t question it at the time. I was eager to start treatment and get the cancer out. But while sitting in the chemo chair for my second round of chemo, I was told that there were lesions on my liver. They had been there all along. Just like that, what I thought was a stage 3 diagnosis became a stage 4 de novo diagnosis.
I was devastated.
The path I thought I was on—surgery, radiation, recovery—was suddenly gone. Surgery and radiation were taken off the table.
I went from thinking that there was a light at the end of the tunnel to knowing that the tunnel would never end. That I would be in it forever.
I felt defeated and powerless.
I finished my remaining two rounds of chemo, switched oncologists, and started on a targeted treatment. Thankfully, I’ve been on that treatment ever since.
A Blank Slate of Treatments
Explaining breast cancer to others can be challenging, and explaining a de novo stage 4 diagnosis brings up a new layer of questions and misconceptions.
I’ve gotten asked when I’m having surgery or radiation multiple times. But for those of us diagnosed de novo, surgery typically isn’t part of the treatment plan.
Why? Surgery often doesn’t change anything, good or bad. Even if the breast tissue is removed, the cancer is already circulating through your bloodstream. That said, every case is different. Some people with stage 4 de novo undergo surgery or radiation for specific, individualized reasons.
Another thing about being diagnosed de novo is that we are considered treatment naive. We have a blank slate of treatment available to us, compared to those whose cancer returns after an earlier stage diagnosis, for whom some of those treatments may no longer be effective due to resistance or progression.
For me, being considered treatment naive makes me feel hopeful. It gives me the knowledge that there are more treatments that could be available to me, and hopefully, with research, there will continue to be more.
Thriving Through the What-Ifs
After being diagnosed de novo, I struggled for a while with a lot of feelings, including guilt and self-blame. What if I caught this sooner? What if I pressed my doctor more for an earlier appointment? I couldn’t help but think that if I caught this sooner, it could have been an earlier stage rather than de novo stage 4.
It took time—and a lot of self-work—to realize that I didn’t do anything wrong. None of us have. It took me a while to stop living in the “what ifs” and start focusing on the right now.
One thing that I have done that has been powerful to me and has helped me move away from the blame and the doubt is putting a picture of myself as a child in my bedroom mirror.
Every time I feel like I want to blame myself for what happened or think I could have done more, I think of that little girl in the picture. Would I tell little Keri that this is her fault? That she could have done more? Of course not, so I shouldn’t tell the present Keri the same thing.
I did everything I could, and I am doing the best that I can today.
That doesn’t mean I don’t still struggle—because I do. Some days are harder than others. But I’ve learned to give myself grace. That it’s okay not to be okay. And that every day I show up for myself, I am thriving with a stage 4 de novo diagnosis.
So, having a de novo diagnosis may not sound ‘fancy. ’It might not come with Parisian vibes or a baguette. But, that doesn’t mean that I can’t bring the ‘fancy’ energy anyway.
