I WISH I HAD KNOWN EARLIER…TO CAST A COOL EYE ON PROGNOSTIC AND RISK STATISTICS

By Jessie Gruman

April 2, 2014

I made the decision to try nonmedical approaches to healing my early breast cancer for quite a while. It was not what my doctor recommended, but there was a much bigger chance that it would not metastasize than that it would and I took a risk that I would be one of the lucky ones. Eventually I had to have a mastectomy. — Kate, 39, personal trainer

For many of us, receiving a cancer diagnosis includes hearing statistics about the average or median survival of people with this stage of this type of cancer. The end of active treatment may arrive accompanied by additional statistics: the risk of recurrence, of different late effects, of secondary cancers.

It is difficult, even for those schooled in the meaning of such numbers, to figure out what they mean for an individual. Some choose not to even try. And not figuring it out can lead, as demonstrated above, not only to miscalculations and odd choices but also to a surge in anxiety.

Stephen Jay Gould, evolutionary scientist and prolific author, wrote about his own encounter with survival statistics when diagnosed with abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When his doctor told him there wasn’t much about it to be found in the medical literature, Gould did his own search, only to find that the median survival for this disease was eight months. He panicked.

Then Gould fell back on his statistical training: That median mortality didn’t mean that he would be dead in eight months, but rather that half of people known to have the disease die within eight months of its diagnosis. Further, an equal number of people lived for eight months or longer, and Gould shared a number of characteristics of those who lived longer: He was young and strong. And finally, the survival statistic was based on people who received conventional modes of treatment and Gould was being treated with the latest experimental protocol. He was convinced that the eight month prognosis didn’t apply to him and that he “would have time to think, to plan, to fight.”

Gould died at age 60, 20 years following this diagnosis — from a different type of cancer.

I am not Stephen Jay Gould. I have neither the breadth of knowledge nor the training to sort through the statistics I am given or that I seek out in order to get a clearer picture of what a diagnosis might truly mean for me. I know that I am prone to panic when I hear survival statistics about my new diagnosis. And once heard, I cannot un-hear them, even though I can do my damndest to convince myself that they are not relevant to me, as they were not to Gould.

In truth, this is not simple even for my physicians: The translation of ratios that represent the experience of groups into the implications for an individual is always difficult. What factors should be taken into account when you customize such statistics for an individual? How much valence does each have?

I wish I’d known earlier to view survival statistics particularly and risk statistics generally at a cool remove. I have had to learn to see them as a sign to be vigilant but not a personalized prediction about the length and quality of my life. I have had to let go of my need to think I could gain some control of future days by ferreting out this kind of information: So far it has offered only false promises and unnecessary heartbreak.

I have had to learn to step away from the statistics and focus on the day — sometimes the hour — in front of me.

This post is the fifth in a series about lessons I have learned over the years about the unique needs and responsibilities of those who have been diagnosed and treated for cancer. The series explores what it takes to find the right health care and make the most of it as part of our effort to live as well and as long as we can.

If you have been diagnosed and treated for cancer, I invite you to join me in this summer project to share with others the hard-won lessons you have learned. Interested in writing a blog for this series? Get in touch. Have a response to mine or others’ insights? Please comment.

• Part 1: What I Wish I’d Known Earlier about Cancer Survivorship
• Part 2: I Wish I Had Known Earlier…How Fear Can Get in the Way of Cancer Survivorship Care
• Part 3: I Wish I Had Known Earlier…Not Every Oncologist Can or Should Deliver Survivorship Care
• Part 4: I Wish I Had Known Earlier…For Many of Us, Symptoms and Late Effects Accumulate Rather Than Fade Over Time
• Part 5: I Wish I Had Known Earlier…To Cast a Cool Eye on Prognostic and Risk Statistics
• Part 6: I Wish I’d Known Earlier…I Still Need a Primary Care Provider Since Most Headaches Aren’t Brain Tumors
• Part 7: I Wish I’d Known Earlier…Survivorship Care Is a Mutual Enterprise
• Part 8: I Wish I’d Known Earlier…Each New Diagnosis Has Unique Demands
• Full series and posts by other cancer survivors

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.