Learning to Live With New Unknowns in Cancer

How do you think about living with stable metastatic stage 4 cancer? What does it mean to be progression-free or no evidence of disease for the long term, yet not free of ongoing cancer treatment, scans, bloodwork, whatever additional appointments your particular cancer type or therapy demands (for me, that means regular cardiac monitoring, visits with the cardiologist and the hematology oncologist), and of course the appointments for improving damage done by treatment side effects?

It’s a good place to be, relatively speaking, but also unexplored and not well-understood.

When I was first diagnosed, I had to adjust to the strange new world I’d entered: the world of metastatic breast cancer, where around every corner was a new unknown. For me, acceptance of all the unknowns was the only way to move through this world without spiraling into an endless cycle of what-ifs that made it impossible to be fully present in the moments and days that I was given.

Like a lot of us with metastatic breast cancer, I initially saw everything as a “last” — my last summer, my last new school year, my last time seeing the leaves change, my last time watching a swim meet. That list was endless and renewed daily, with grief that was impossible to express.

There are days when I wake up back in that place of “lasts,” but mostly I now wake up like anyone else, though also wondering where I am in terms of cancer. Definitely not an early-stage survivor, since I was never early stage, but also different from most of my friends with stage 4 cancer, who have faced or are facing progression and shrinking lists of treatment options. I will likely join them in that space sooner or later, just not today.

Instead, I am starting year 10 on the same treatment I started with, minus the taxane. I’ve been extraordinarily lucky, and I am grateful. There are others like me of course, mostly those with HER2-positive metastatic breast cancer but the other subtypes too. The drugs we are given are harsh and hard on our bodies, and for that price some of us are given a survival that extends beyond even the best of what was possible.

We don’t know enough about metastasis — when, why, or how it happens sometimes and not others — and while there’s ongoing research to prevent breast cancer from developing, there’s not enough research about how to prevent further progression in those already living with metastatic breast cancer. For HER2-positive metastatic breast cancer, this is especially pertinent since de novo disease, aka stage 4 from the start like me, is more common or becoming more common than HER2-positive early stage breast cancer that later recurs. We need to know how to stop what is already there.

People like me, so-called exceptional responders or long-term responders or unicorns, provide a hint of what is possible. Right now, though, we live on our own little continent in this strange and lonely world of metastatic cancer, not knowing if those cancer cells are stopped in their tracks permanently or temporarily. Sometimes waiting for other shoe to drop and sometimes grabbing each day for all it is worth.

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