Both are natural questions.
People have heard the stories: a person gets cancer, and, following some combination of surgery, chemotherapy, and radiation, an oncologist declares that the patient is in remission or NED (no evidence of disease). But often that is not the end of the story, and sometimes—more often than is comfortable for anyone—the cancer reasserts itself. So, when I tell folks I’ve had cancer, their expectation is that I’m in remission, the cancer being dormant or too small to detect.
But that is not the case for me. My cancers are special. Special both in why they occur and how they look and act when they do occur. My cancers arise from my genetics—I have one of a set of mutations collectively called Lynch syndrome—which puts me and others like me into a distinct category, complete with our own physical and psychological challenges.
For me, cancer is the symptom of a bigger problem. Although cancer is still a significant concern for me and people like me, cancer is at least something that can be detected, removed, and even cured. While my genetics can be identified, however, they cannot be repaired: I can never be fixed. From the moment that sperm met egg, my genetics were cast in stone and will remain that way until the day that I die.
To be clear, my genes are not cancer and do not cause cancer, not technically. Instead, what they do is cause a weakness in my body’s natural systems; specifically, they disrupt the protective system that detects and stops errors in my cells from replicating and becoming cancer. I am predisposed to getting cancer.
One thing a predisposition does is create a category of people who are likely to get cancer but who have never had it. In Lynch circles these people are called previvors: people who are 60-80% likely to get colorectal cancer and 40-60% likely to get uterine cancer—along with a host of other less likely cancers—but who have never had cancer.
A predisposition also skews the usual measures to mark survivorship. In the general population, survival after a cancer diagnosis is marked by the passing of certain yearly milestones: doctors often talk about one-year or five-year survival statistics. They can do this because the overall incidence of cancer is low enough to assume they’ll be dealing with only the original cancer—whether or not it metastasizes—in any one person. Thus, once cancer treatment begins and succeeds, the chance that the cancer will reassert itself generally decreases with each passing year. But a predisposition towards cancer does not go away once a cancer has developed. The body does not say, “Well, that’s done; let’s give him a break now.” Instead, those broken mechanisms continue to allow new cancers to form at the same high rates of likelihood, so that a fresh tumour can easily show up, whether a year or a decade later: for me it was 15 years between the first and second ones—both colorectal tumours, each on an opposite end of the large intestine.
This predisposition can exact a terrible psychological toll. Many who are Lynch positive are fearful of the future and revile their genetics, fate, God, or circumstance. Each new medical test, typically a surveillance measure, can trigger dread because of its possible results, with the patient all too aware of the suffering already caused by cancer in their own life or the lives of their family members. On the extreme end of this trauma are those who, upon discovering their Lynch-positive status, would contemplate suicide as a solution to their circumstance.
Fortunately, I’ve not had to live in that dark space, so that, to those who have a hereditary cancer syndrome, I can offer hope. To the previvors—people like my son, who are disposed to cancer but have never been diagnosed with a malignancy—let me encourage you: knowing is better than not knowing, and watching for cancer does not have to be synonymous with dreading, or even anticipating, its arrival. To the cancer patients, let me say: treatment is hard, but we (doctors and patients) are learning more and more every day how to deal effectively with the cancers caused by our genes. And to those, like me, whose bodies have been ravaged by cancer in the past and whose organs are being taken from us, a bit at a time or all at once: life is precious, and we deserve to enjoy it. We can and need to cherish each day without concern about the future.
But, in a scary world where calamity of one kind or another is virtually inevitable, isn’t fear a natural result? Isn’t fear to be expected when natural disasters and auto crashes and cancer seem to be just around the corner for all of us?
Natural or not, we should not live in fear. For fear is but another sort of calamity: the calamity that we cause for ourselves. The one we create in our minds and feed day by day. The calamity that ensures we never get to truly live.
I have a genetic predisposition to cancer. So does my mom. So does my son. But that knowledge does not define my life. It does not consume my thoughts. It is just one part of me, and a very small part, at that. I want to model that to my son. I want to share that with other people with Lynch, whether they have cancer or not. Life is too big and wonderful to be put into a box as small as Lynch syndrome.
His latest book, What I Learned from Cancer, is available in electronic form at his payhip.com site: http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where shipping of copies of the softcover edition is always free (except to the International Space Station). To order a paper copy of the book, visit: http://prompterstolife.com/shoppers