There Is No All Clear

In my imagination of cancer, there were more scans. I expected that being diagnosed with cancer involved being scanned, somehow, to see if it had spread. Then at the end of treatment, after the cancer had been removed and the treatments endured, the doctors would do it again and say, “Well, there’s always a chance it could come back, but as far as we can tell, there’s no more cancer.”

It turns out that’s not how it works, at least for breast cancer.* There are no scans. There is just surgery, removal of a few lymph nodes, and treatment.

What that means is that there’s never really an all clear. At one point, the assumption was that cancer traveled from its original site to the lymphatic system to distant organs, and so if there was no evidence of cancer in the lymph nodes, that meant that distant organs were most likely okay. However, it has long been clear that cancer can travel to distant sites through the bloodstream without necessarily affecting the lymphatic system.**

So in my head (and in reality), the possibility existed that somewhere else in my body was more cancer—cancer in another organ, which would no longer be curable. But it was (is) an unknown. One result of this is that it never felt like there was a moment of “all clear.” There was just the end of active treatment, and hoping for the best.

There are good reasons that scans of other systems are not part of the standard of care for breast cancer. The official ASCO recommendation is that imaging tests not be used for early (through stage II) breast cancer when there are no signs of further spread. The reason is that the chance of detectable cancer is low, false positives are common and require more procedures and anxiety, and there is no evidence that scanning extends life.

And having had clear scans would not mean that the cancer would not return. Scans aren’t that sensitive, and you only need a few cells in the right place for the cancer to eventually do its thing.

Yet I think I would feel better if, at the end of the surgery/chemo/radiation triumvirate, I had had scans and they found nothing visible. Even knowing that that doesn’t mean no more cancer. At a minimum, I would be less likely to interpret symptoms happening six months out as evidence of spread.

As I am writing this out, though, I am realizing that my fantasy of reassurance from the scans I didn’t have is just that—a fantasy. The fact is that with or without scans, I am living with the risk of metastatic breast cancer. Odds are in my favor. Yet the risk is real, and it is impossible not to interpret feelings in my body through that lens.

But we all live with an unknowable level of risk. I was living with breast cancer for years before I knew I was living with breast cancer; I also have some unknown risk of dying from a car accident, stroke, or something else entirely in the next few years. You, too, have some quantifiable yet ultimately unknowable risk of dying over that time period. The goal is to somehow live with awareness of that risk, in recognition that none of us have infinite time, without letting it become the only thing one thinks of.

I’ll let you know when I figure it out.

* At least in my case, and as far as I can tell more generally.

** Disclaimer: I am 100% not a medical professional, take my interpretations of biological processes and medicine’s understanding of them with a very large grain of salt.

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