A chronic disease is one that can be managed such that a person’s life expectancy is not changed.

I was 38 when I was told that my life expectancy had just shrunk to 2-3 years.

Think about that, for just a second, rather than looking at another 40 to 50 years based on the longevity of the other members of my family, I was told 2-3 years.

That’s a life expectancy cut astonishingly short.

Stage IV is terminal, not chronic.

Today, my husband and I, along with another 150ish members of the MBC community as well as ally’s, will be marching, protesting and lobbying on Capitol Hill. We will cap off the day with a full reading of the play, IV. It will be a long day but we are fighting for something that is incredibly important to me. I’ll be posting about our experiences. Stay tuned!

The numbers we use to attempt to give some shape to the astonishing amount of people literally dying of this disease are estimates. We don’t have real numbers because we’re not being counted.

Think about that … we count all the early stagers, somewhat obsessively. But those of us who are actively dying, there is little attempt to count us.

I matter. I need to be counted.

This particular statistic is a little old. In 2019, it is estimated to be over 45,000 men and women. That divides into 116 men and women in the US who die EVERY SINGLE DAY.

WHERE IS THE OUTRAGE!!?

The variety amongst breast cancer subtypes are myriad. Two people may even have the same subtype but at different concentrations and their cancer may behave very differently. Understanding your own subtype is extremely important. Each person is an expert of their own body and brings a huge part of the equation to the table.

Treating cancer of any kind is both an art and a science. Yes, there are scientific principles and the doctors need to understand a great deal to be able to work within the protocols. Yet, at the end of the day, every person is different and the profile of each subtype often results in different behavior of the cancer cells. This is when the art part comes into play. A medical oncologist who spends their lives and careers treating cancer needs to have both tools in their toolkit.

Stage IV is terminal. There is no cure. While there are chronic features/symptoms, stage IV metastatic breast cancer is not chronic. I and the rest of the men and women living with Stage IV hop from treatment to treatment, desperately trying to stay ahead of the mutating cancer cells, praying to stay alive as long as possible.

Would you want to live that way?

Statistics are hard to keep up with. The stats quoted in this slide are a combination of reviewing the SEER database, extrapolating what we know, and a good amount of anecdotal data. We do need to be counted more accurately so that stats and data can be more precise. The issue is, especially for hormone positive cancer, a reoccurrence at another early stage or at stage IV can happen decades away from the initial diagnosis. And the cancer doesn’t have to spread through the lymphatic system. Mine, for instance, spread through my blood as I had no positive lymph nodes.