From the Start: De Novo Metastatic Breast Cancer (Beyond the Breast)

Beth Caldwell, on finding out she was de novo metastatic, coping with diagnosis and the benefits of community. Learn more about resources and support for metastatic breast cancer from our Beyond The Breast campaign.

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.

Beth Caldwell

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!

Read more blog posts and insight from Beth on her blog, The Cult of Perfect Motherhood.

12 thoughts on “From the Start: De Novo Metastatic Breast Cancer (Beyond the Breast)

    • Did I just read your comment correctly? Did you seriously just say that “because breast cancer is not very aggressive usually and with diet and lifestyle modification it can be beaten!”? I do hope you are being sarcastic. Diet and lifestyle modification is not a treatment option for any stage of breast cancer.

      • No, I’m not kidding you at all. If you are telling me that you treated your breast cancer with ONLY diet and lifestyle changes and that you are now cancer free, then I will challenge you to prove it. If you are telling me that you are cancer free and remain cancer free after conventional treatment and that you attribute your cancer free status to diet and lifestyle, then you are the exact person who blames a person for being metastatic. If this is your thought process, you are blaming the cancer patient. Please … educate yourself. It is not the fault of the patient that they became metastatic. While diet and lifestyle will reduce risk, they will NOT prevent breast cancer, nor will they prevent recurrence. Count yourself lucky.

    • Good grief – a good diet/lifestyle will certainly help your general health but it will not prevent or cure breast cancer and as for “breast cancer is not very aggressive usually”, why on earth do you think that? Such an idea is very hurtful to all those who have metastatic breast cancer and had the best diets and followed a very healthy lifestyle.

  1. Furious, it sounds like you and your Mum were diagnosed as “early stage” and not “metastatic.” You need to be educated on the difference. With regards to (the good) Angelina Jolie, you go your way and we’ll go ours!

  2. Pingback: Connecting You to the Many Voices of Those Living With MBC | Living Beyond Breast Cancer's Blog

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