In a recent post in one of my metastatic breast cancer Facebook groups, someone stated that those MBC patients whose breast cancer metastasized to their bones lived longer but were in more pain versus those whose breast cancer metastasized to an organ (eg. liver, lungs, brain) would die sooner but have less ongoing pain. My mets are to my liver and currently, I don’t experience pain from them. So, in my sample size of one, one part of this statement holds true. However, it was the life expectancy part that made me think a bit. Was it true? Could I find any data that might shed some light on the claim?

This brings me to a current problem about metastatic breast cancer. Those of us with metastatic breast cancer are not tracked. The NCI/SEER (National Cancer Institute/Surveillance Epidemiology and End Results) databases record when a person is diagnosed with breast cancer and when a person dies. It does not record a metastatic recurrence for someone who had early stage breast cancer. Therefore the SEER databases collect only those with an initial Stage IV (denovo) diagnosis, which represents only a small portion of metastatic breast cancer.

Since I had an earlier breast cancer cancer diagnosis, I was initially counted in breast cancer statistics. But now that I’m metastatic, my new diagnosis is not tracked anywhere until I die.

So since we don’t know how many people are living with metastatic breast cancer, or how many early stage breast cancer patients have recurrences, we also don’t have information about how the incidence and outcome of MBC has changed over time for the common subtypes of breast cancer. This means I have no way of answering my initial bones versus organ question.

There are definitely some logistical challenges of tracking metastatic breast cancer. It can become metastatic months, years, or even decades after the earlier stage diagnosis. With the spottiness of our national health records and healthcare system, one can see how connecting these dots is complex.

However, it’s important. With over 250,000 new breast cancer diagnoses every year, and an estimated 30% of those early stage diagnoses, tracking recurrence, outcomes and quality of life for those who turn metastatic is an urgent need.