Facing Denials and Decisions with Incomplete Information

One of the often hidden burdens of living with terminal cancer is that the decisions never stop. People imagine the hard part is getting the diagnosis or hearing the word progression or running out of treatment options. And yes, those moments are devastating. But there is another kind of burden that receives far less attention: the uncertainty of having to make decisions while standing in the middle of a story whose ending has not yet been written along with having to justify the cost of the tests that may provide clarity to a nameless, faceless insurance company.

Here’s what’s going on right now, in real time (you may be reading this while I sit in the infusion center): my tumor markers are rising by about hundred points each month, something that has never happened in all the nine (9) years I’ve been living with Stage IV Metastatic Breast Cancer (MBC). We’ve learned to rely on the tumor markers, to ask for scans sooner each time there is an upwards trend and each time the scans have confirmed that the markers showed the way. But in the past, the trends might show an increase of 2 or 5 or 10, not 100.

At the same time, with bloodwork taken mere days apart at similar times in the chemo cycle, the ctDNA results are falling precipitously, down over 90% since the high value of 139 as I came off my last line of treatment. This is only the third time in all the years I’ve been getting regular Signatera testing that the results are diverging from tumor markers but never by this much and never in a sustained trend.

The two pieces of information seem to be having entirely different conversations. One whispers concern. The other offers steady reassurance. And I am left standing between them, trying to decide whether to move scans sooner. Trying to determine whether anxiety is speaking or intuition. Trying to figure out whether I am witnessing progression or simply the last gasps of the dying cancer cells (and sooooo hoping for the latter).

Living with MBC has taught me that not every signal means progression or the beginnings of progression, but it has also taught me that sometimes danger announces itself in whispers long before it arrives screaming. We’ve had nine (9) years of learning to pay attention to specific signals and making the best decisions we can, guided by the experts I’ve sought out.

But now, the signals are muddled, diverging, complicated. So we wait. And while we wait, we think. And calculate. And analyze. And second guess. And wonder. And obsess (at times).

Waiting is never passive when you have MBC. Waiting is work, the kind of work nobody sees. The mental gymnastics of trying to assemble a puzzle while half the pieces remain hidden. The exhausting exercise of trying to make life-altering decisions with incomplete information. The burden of knowing that every choice feels consequential, especially now when there are so few options left for me.

• Move the scans up?
• Wait another month?
• Trust the markers?
• Trust the ctDNA?
• Trust your gut?
• Trust the process?
• Trust the science? The statistics?
• Trust the doctor’s interpretation?

No one knows for sure and that uncertainty becomes its own form of suffering. What makes it harder is knowing that one of the few tools helping me maintain some semblance of sanity during these stretches of waiting has been denied by my insurance company.

Again.

The irony is impossible to miss. The test my oncologists believe is valuable, the one they believe is more accurate than tumor markers. The test ordered by physicians whose entire careers are devoted to understanding MBC and who are on the cutting edge of research. The test helping me monitor what is happening between scans. The test helping me survive the psychological distance between appointments. The test that is helping me brave all the side effects. The test that is keeping me showing up for more treatments.

Denied.

Not because my doctors don’t believe in it. Not because they don’t understand the science. But because somewhere, behind a desk I will never see, a physician employed by an insurance company has decided otherwise. First, a board certified pediatrician and then a family medicine doctor. Someone who may be an excellent physician in their own field, but someone who does not spend every day on the front lines of oncology. Someone who is not treating patients with MBC. Someone who doesn’t even treat adults (just like children aren’t small adults, adults aren’t large children). Someone who is not reading the latest emerging data on liquid biopsies and molecular monitoring. Someone who does not know me or my history or the results of tumor markers over the last nine (9) years.

And somehow their opinion carries more weight than the specialists who have dedicated their careers to keeping people like me alive. There is something deeply unsettling and maniacally cruel about that. Not because I believe every new innovation should automatically be covered, but because the people making these decisions are often the furthest removed from the consequences of them.

If the test is denied, they move on to the next file. The next case. The next checkbox. For them, it is paperwork or maybe just a click of a button after seconds glancing at the request, or maybe just confirming AI categorization.

For me, it is another month spent staring into uncertainty. Another month wondering whether what is happening inside my body is healing or growing. Another month carrying questions without answers. Another month jumping at every twinge in my body. Another month trying not to only obsess.

The people issuing denials never sit with that fear, they never lie awake replaying lab results in their minds, looking back over years of data. They never stare at a portal waiting for new numbers to appear, refreshing every few seconds sometimes for days. They get to move on, go home, think about something else. They never have to stare into the eyes of my children, my husband, my parents wondering what is coming.

But patients do, every day. And that is what feels most cruel. Not the denial itself. Not the rising markers. Not even the uncertainty. It is being reminded, over and over again, that the people making decisions about your care often have no stake in the outcome, while you are left carrying every ounce of it.

Waiting. Watching. Wondering. And desperately trying to hold on to your sanity.