Early Detection Doesn't Save Lives

Can we talk about "Early Detection Saves Lives"? After the Super Bowl commercial last night, there's been a lot of frustration and anger in my stage four breast cancer Facebook support groups, which I share. I've wanted to write about the myth of "Early Detection Saves Lives" before; I've found that messaging infuriating ever since my stage four diagnosis, when I learned that breast cancer can always recur. This seems to be the catalyst I needed to share my thoughts.

At 31, I was diagnosed with breast cancer. I was almost ten years too young to get a mammogram but found the lump myself. Thankfully, I was taken seriously and got the follow-up imaging I needed to determine the lump was concerning (which so many young women don't get because doctors still think breast cancer is an older woman's disease) and the biopsy needed to confirm it was cancerous. After some additional tests, we were thrilled and immensely relieved to find out that my cancer hadn't spread to a single lymph node. We had caught it early!

I remember that included in my diagnosis care package from the cancer center was a video in which women with every stage of breast cancer were interviewed. As I watched it, I felt so sorry for the women who were stage four; I was devastated on their behalf. How had they missed the warning signs that could have caught their cancer earlier? How they must blame themselves for their negligence, their lack of attention to their own bodies or their failure to get treatment when they could! I was so glad I wasn't in their shoes.

I followed up my early-stage diagnosis with all the treatments I could - a double mastectomy (even though cancer was only found in one breast) and eight rounds of chemotherapy (even though I said I would never do chemo). After enduring all that, I started additional follow-up treatment, a drug to continue blocking estrogen in my pre-menopausal body and keep the cancer from coming back. I was told studies showed that taking this drug for five to ten years demonstrated the most protective effect, and I agreed to take it as long as was necessary.

And then, three and a half years into my course of preventative treatment, I started having back pain. The pain eventually led to imaging, which revealed a fracture in my T3 vertebrae, caused by cancer damaging the bone. 

My cancer was back and had spread to my spine. I was now stage four. 

But we had caught my cancer early! I was currently on preventative medication. I was having regular follow-ups with my oncologist. I had done everything right.

It turns out early detection doesn't save lives. Breast cancer can recur anytime - even thirty or forty years later. They don't know why it recurs for some and not for others. If you've been told you're a survivor, so was I. Yes, you survived treatment; that's a huge accomplishment! Ring that bell! But don't believe that you've survived breast cancer; you won't know that until you're dead.

Absolutely examine yourself regularly and seek care for anything concerning (and young women, be persistent if you're not being listened to), but don't be fooled into thinking that catching it early means you've been saved from a recurrence and/or a stage four diagnosis. 

We need to remove the idea and stigma that having stage four means you didn't do something right. You could have done everything "right."  Breast cancer is a tricky disease. It outsmarts treatments, and it outsmarts our own bodies and immune systems. Maybe one day we'll figure out why some breast cancer comes back, why some breast cancer spreads, and how to stop it from doing so. But catching it early isn't a guarantee and no one should think that it is.

Getting my very first chemo treatment - age 31