Cancer Survivorship Might Kill Me

When I was a child, I had cancer.

A malignant tumor the size of a softball caused my kidney to rupture while I was playing with my dad. It took two hospitals to determine that I had stage III Wilms tumor, a pediatric kidney cancer affecting roughly 500 children each year in the United States.

I was given a favorable prognosis. After a year and a half of surgery, radiation, chemotherapy and being teased in kindergarten for being bald, I no longer had cancer.

Growing Up as a Survivor

As a teenager, I was active in the cancer community.

I organized large-scale fundraisers, attended cancer events and spoke about my experience before crowds of hundreds. I went to follow-up appointments with my oncologist and care team. I was proud of what I had survived. I even wrote about cancer in my college essay.

To me, survivorship meant laps around a track and memories of past trauma.

In my early twenties, my life as an inspirational, brave, heroic cancer survivor was turned on its head.

Over the course of a few years, I developed multiple skin cancers that required specialized surgeries. My health insurance sent me home from studying abroad after I began urinating blood. I underwent surgery to remove my ureter, entered premature menopause and began seeing what felt like a million specialists every year.

Eventually, I stopped talking about my cancer experience.

I was angry.

This was not what cancer survivorship was supposed to be.

The Late Effects of Treatment

During that period, I began researching the published literature on the late effects of childhood cancer treatment, health conditions that can emerge decades after treatment ends.

The findings were not pretty.

As many as two-thirds of childhood cancer survivors will develop at least one late effect of treatment. As many as one-fourth will experience a serious or life-threatening one.

We develop cancer again, including breast, lung and thyroid cancers. We experience heart conditions and organ failure. We live with post-traumatic stress and other psychological effects.

Some of us cannot have children. Those who can may be unable to carry them.

We age faster. We die sooner. Our life expectancy is 30 percent lower than that of the general population.

We suffer, and sometimes die, from the long-term effects of treatments that once saved our lives.

We may be cancer-free, but we are never entirely free from cancer. The consequences can emerge at any time and without warning.

Our bodies can feel like ticking time bombs.

When Survivorship Feels Like Failure

When the success of a cancer survivor is measured in “years cancer-free,” it can be difficult to come to terms with feeling like a failure.

As I said, this was not what survivorship was supposed to be.

But this is what survivorship secretly looks like for many of us. The experience comes back to haunt us, and sometimes it kills us.

The healthcare system is failing us, too. Physicians often do not know what to do with us, and medical students are rarely taught about our needs.

Living Well and Ending Well

I began thinking more about how we die.

So much of dying is tied up in a complicated healthcare system that, somewhere along the way, stopped centering the people it is meant to help.

I began thinking about how we endure serious illness and preserve quality of life in the face of adversity.

More importantly, I began thinking about how we live.

So much of ending well is about living well.

The Late Effects of Speaking Up

There is no magical answer.

This experience has reminded me that even when we cannot see immediate results, the actions we take now, the stories we tell and the lives we live can have lasting effects.

Small changes can create a ripple that eventually reaches the shoreline.

Research into late effects has already led to changes in treatment plans and improved quality of life for the next generation of pediatric cancer survivors.

That is what I hope will come from sharing this story.

I am not expecting an immediate response to our cry.

Maybe, instead, there will be some late effects.