When the End Doesn't Come

When patients outlive their prognosis, the hardest part is just beginning.

A subscriber (thanks, Mike L) recently shared an excellent article from the Ottawa Citizen by Bruce Deachman that got me thinking about patients who outlive their prognosis. I’ve recently written about outliers in cancer care and the challenge of accurately discussing prognosis in those with advanced cancer.

In his article, What happens when you don’t die on time? Deachman tells the stories of three people who outlived their prognoses and now exist in a sort of strange, undefined place. They had spent much of their savings crossing off bucket list items and arranging to say their goodbyes. But then the end never came.

Photo by Bruce Deachman / Post Media

One woman, 34, broke but alive, is debating whether to look for work. A man whose stage 4 liver cancer went into remission is dealing with anger after already going through the emotional process of dying. Another patient with breast cancer saw her prognosis shift from five years to much longer, leaving her to walk out of her oncologist’s office puzzled over why she didn’t feel happy.

We see this in oncology. I’ve had patients surpass their prognosis by years, and it can be a real challenge for both them and me as their oncologist. How do you move forward after accepting an ending, reshaping your entire life around it, and then finding yourself still alive?

I wrote one of my favorite Curative pieces about this, about a patient named Fred and our first prognosis conversation. It was early in my career, and I explained to Fred that he likely had a life expectancy of about twelve months. He went on to live nearly seven years. That experience changed how I approach the question of “how long do I have” forever, and it’s a piece I’d encourage you to read if you haven’t.

The Deachman article goes much further, though. It explores what happens when someone has to rebuild a life they had already finished arranging.

When someone receives a serious diagnosis like cancer, life can shift in days or weeks. I’ve seen people move up weddings, finally take trips they’d been postponing, and have conversations they’d long avoided. There’s a clarity that comes with that urgency, and I’ve always admired it.

I’ve often helped patients plan treatments around those milestones, and I’ve never been disappointed when someone gets to celebrate twice because things turned out better than expected. One patient once told me he only hoped to live long enough to see his first grandchild. Recently, he told me he’s now expecting his fifth.

But we don’t often talk about what happens when the urgency is gone and the person is still here.

I’ve seen patients doing well on treatment, with scans showing stability or improvement, and instead of feeling relief there can be a kind of disorientation. They’ve built their entire outlook around heading in one direction. When that direction suddenly shifts, their emotions don’t always catch up right away. Good news can be surprisingly hard to absorb when your life has been shaped around preparing for an ending.

As an oncologist, I’ve never used the word “terminal” because it doesn’t feel right. It’s common in the media, in conversations, and even among patients, but it closes a mental door. It implies the ending is already set, and in my experience that’s rarely the case.

I’m honest about the seriousness of a cancer diagnosis. I share what the data shows and the range of possible outcomes. But I try to steer clear of labels that might define someone’s future in their own mind, as I know that can affect how a person sleeps, talks to their kids, or feels about making plans.

Lately, I’ve been writing about outliers in oncology because they’re showing up more often in my practice. With the rise of immunotherapy and targeted treatments, I have stage 4 lung cancer patients I started treating years ago who are still doing well, still coming to the clinic, still living full lives. Some may even be cured, though we’re careful about using that word too soon. It’s real progress, but we need our support systems need to catch up with the biology.

What I think every person living with metastatic cancer deserves is access to mental health support from someone who understands this particular kind of uncertainty.

And not just any therapist. Someone who understands how the next scan could change everything again. Someone who understands that “you’re doing great” feels a little hollow when your life is measured in three-month intervals between CT scans. Someone who appreciates that remission doesn’t always feel like relief, and that planning a future feels different when you weren’t supposed to have one.

In community oncology, where I practice, this gap is wide. Many patients don’t have easy access to anyone who specializes in this kind of counseling. Sometimes they end up talking to me about it, and while I do my best, there are things these patients need that go beyond what I can offer in a clinic visit.

So, for many patients, they find their own way through this.

Some, like my patient Fred, take on a “house money” mentality and go fully back to living their lives. Others feel lost or stranded. Some find a kind of peace that is real but complicated. And some never talk about it at all. They just keep showing up and deal with it in their own way on their own time.

I’ve stopped expecting a specific reaction. Instead, I focus on creating space for whatever the patient is truly feeling, even if it doesn’t align with what others think they should feel.

In oncology we spend a lot of time talking about survival rates. We should also spend more time talking about what surviving actually feels like.

For many patients it is far more complicated than anyone expects, and they shouldn’t have to figure that out on their own.

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