From the start: De novo metastatic breast cancer

Like a lot of women, I found my lump in the shower. At age 37, I was too young for routine mammograms, and I didn’t have a family history of breast cancer, so I did self-breast exams every two months, and of course I’d never found a lump before. This one was clearly something to be worried about – it felt like there was a kid’s rubber bouncy ball in there. I went off to work that day trying to pretend everything was fine, but I knew it wasn’t, and after work, I told my husband about it and let him feel the lump. He told me “We got this,” and hugged me while I cried. The next morning, I called to make a doctor appointment, and the diagnosis process began.

Where my story differs from the typical breast cancer diagnosis story is that as I was about to be wheeled in for my port surgery, my surgeon told me that my PET scan had shown that my cancer had already spread beyond my breast, to my hip and sternum. About 6-10% of newly diagnosed breast cancers are what we call de novo metastatic, which means they were metastatic from the start, like mine. For us, that means that when we’re done having all those tests that come with finding a lump, we also find out that our cancer is incurable.

As we drove home from the hospital that day, both of us crying, I turned to my husband and said, “How can this be happening? I just found the lump two weeks ago.” And he said, “Let’s ask your doctor that question when we see him tomorrow.” So I did, and he looked me straight in the eye and said, “There is nothing you could have done to prevent this.” It turned out that my cancer was very aggressive and grew very quickly. It came down to this: sometimes these things just happen. It’s just one of those things.

It can be hard to wrap your brain around the idea that something so catastrophic as a diagnosis of metastatic breast cancer can be just one of those things. Lots of patients search for answers, and too often we blame ourselves. Maybe if I’d had kids younger, maybe if I’d eaten more organic food, maybe if I’d lost some weight, maybe if I’d had that mammogram sooner…the maybes can drive you crazy. But the reality is, sometimes cancer is just this aggressive. Sometimes, despite our best efforts to take care of ourselves, we just get sick.

For those of us whose breast cancer was metastatic from diagnosis, we can feel a bit isolated from the broader breast cancer community, because our experience of our disease is different. We don’t get to celebrate the end of treatment, because treatment never ends. We don’t have to try to put our lives back together after cancer, because for us, there is no “after cancer.” We know from the beginning of our cancer experience that we will die of or with our disease.

This is why it’s so important for those of us with metastatic breast cancer to connect with others with our disease. It’s so much easier to cope with the challenges and struggles that we face when we can talk to others who face those same challenges and struggles. We come from all different walks of life, but we share an experience that shapes us in similar ways. If you’ve been diagnosed with cancer that’s spread beyond the breast, Living Beyond Breast Cancer has some amazing resources for connecting with others who have metastatic disease and I highly recommend checking them out. Although you may feel different from other people with breast cancer, you’re not alone!

We maintain this blog in memory of Beth Caldwell, a graduate of our Hear My Voice Metastatic Advocacy program.