Invisible Scars and Post-Traumatic Growth Following Cancer

Contemplating the meaning of life is more pleasant with a friend.

Source: Tamara Bellis/Unsplash

As I’ve written previously, I was diagnosed with colorectal cancer at age 36, becoming a data point in what is now a significant increase in this type of cancer among young adults. As I wrote this time last year, I am no longer in the “active [recurrence] surveillance” part of my cancer care experience. That is, my encounters with the health care system look pretty typical of a woman in her early 40s. Specifically, I no longer lay in the CT scanner to check for metastases, which I did each August for five years until 2022. The health care system has determined that I am physically recovered from my cancer diagnosis.

Adjusting mentally to my cancer diagnosis was—and remains—an important challenge. Rather than taking up my entire mental field of vision these days, cancer will “photobomb” my mind, prompted often by hearing of the experiences of others. This summer, a work colleague—who happened to also be diagnosed with colon cancer before age 45 (the new recommended age for screening; so, GenX, get in gear and get those scope appointments)—passed away from this disease. She also had a young family, was a strong researcher, a caring teacher, and (as was apparent at the memorial) well-loved. And she was treated at the same hospital by some of the same doctors who treated me. The notion that we were on parallel paths—until we weren’t—sits heavily with me. Indeed, every time I read about a person who passed from colorectal cancer, I have to literally tell myself, “Their story is not your story. You don’t know how your story will go," to calm myself.

Epidemiologic surveys show that people with a history of cancer (that is, who have completed initial treatment) have worse mental health (typically measured by some sort of non-specific “psychological distress”) than those without. The reasons for this are multiple: some is driven by lingering effects of treatment, whether pain, fatigue, cognitive difficulties, sleeping problems, etc., that may follow surgery, chemotherapy, or radiation; some is due to functional limitations (e.g., being unable to work or engage in personally-meaningful activities due to bodily changes that persist long after treatment is complete). For colorectal cancer, this may come in the form of GI issues like lower-anterior resection syndrome (LARS), which can lead to really socially awkward things like incontinence. And so it is not surprising that people with a history of cancer often have poor mental health.

But this is not the whole story when it comes to the mental health of people with a history of cancer. When I think about how cancer has impacted my life, I don’t think of it as a “bump” in the road, where my goal was to regain control of the wheel and maintain the course I was previously on; instead, I think of it has a fork in the road wherein I am on a new course, one that has some of the same elements of my prior path, but also a set of unique elements. Some of those new elements are negative—having to seriously consider the fact of your own mortality is not a good look for most people—but some are positive. For myself, with the help of acupuncture and therapy, I have integrated my experience with cancer into my identity. That is, my cancer experience is part of my biography, and I understand it as one of the most difficult challenges I have ever been through. I often disclose my diagnosis in regular conversation with people I don’t know well, or to my students, because it is something that I think helps others get to know who I (now) am, as a person. And I am not alone. People with a history of cancer often speak of continuities and discontinuities, both internally and in their broader social life. Some researchers refer to this phenomenon as "post-traumatic growth."

Studies have shown that psychological well-being for people with cancer can be improved with many of the same interventions that reduce distress and improve mental health for all persons. For example, a growing body of research shows that psychological distress is reduced by being physically active. That is, there is a tangible, “mechanical” intervention for some of the emotional distress caused by the tangible, “mechanical” experience of cancer treatment. I myself have greatly benefited from running outdoors—something I would actively avoid pre-diagnosis—as a means of managing my emotional distress in the years following my diagnosis.

But the other part of emotional distress post-cancer diagnosis—the existential threat part—is unlikely to be fully addressable through social support or regular jogging. That part requires visiting the philosophy section of your local library, so you can learn from people who have asked the question “Why are we here?” And perhaps the autobiography section, so you can learn from people who have more distance between their sources of pain, trauma, and loss—whether cancer or something else—and who have worked with an editor to find the right words, so that others can appreciate the intangible part of their story. And finally the literature section, to read from LeGuin (The Dispossessed), Chiang (The Story of Your Life), Borges (The Secret Miracle), and others who have written some of the most accurate truths about the uncertainty of our existence using the vehicle of fiction.

And after reading and your daily walk, consider how you want to live, now that you know your story may not end with peacefully dying at age 99 in your sleep. I recommend starting with a piece of chocolate, the darker the better.