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15 February 2014

Living uncertainty

Written by
Jennifer Garvey Berger

You might notice that we’ve been quiet here on the CL blog this month (until yesterday). Our last quiet period signalled our hard work in a variety of other pursuits—we were writing and researching and working away at our new book and at various papers. This quiet has been more ominous.

See, I was diagnosed in early January with stage II breast cancer.  As a 43 year old woman with no family history of cancer at all, this was devastatingly unexpected (probably cancer is always devastatingly unexpected). Talk about living inside ambiguity and uncertainty—this is my new home. We are also finding that there are system wide effects as well; when a person gets a disease like this, everyone in her whole inner circle is shaken and changed, and many in the next circles out. So my firm has been rallying around me, my clients have sent me flowers and support, and my family and friends have cooked meals and sent love and poetry and soft presents. I have been writing about this whole experience on my personal blog (kiwibergers.blogspot.com). But the truth is I’m learning so much about living in ambiguity that I thought maybe I’d pull some of those ideas over into this blog, which is now a little experiment in bringing my whole self to work (perhaps you can let me know what you think).  Sometimes my life feels a lot like a descent into chaos. At other times I feel like I am in the middle of experiments that may or may not be safe-to-fail.  I am also surrounded by complex unpredictable issues that are talked about in very technical terms, laden with data, and competing expertise.  It is as if I am figure skating across the Cynefin domains (although alas, nothing is simple).  Let me trace a couple of these arabesques.

Right now we are in the zone between surgery (behind me) and chemo (in front of me) and trying to make decisions about things we knew nothing about just six short weeks ago. One of the core decisions is about a different sorts of tests that might show whether the cancer has already metastasised (highly unlikely in my stage II cancer, but still vaguely possible) and whether it’s likely to in the future.

The biggest issue the oncologist brought up is about whether to have a full PET-CT and bone scan (which she highly recommends) to see whether there are established tumours that have already metastasized elsewhere in my body.  The odds that there are already tumours elsewhere in my body did not occur to me because my lymph nodes were clean, but the oncologist alerted me to the fact that there is some small chance that the cancer has already metastasised. And so here begins a theoretical question that is very very real to me right now: How much do I want to know about what might happen in the future? How much expertise to I want to use to attempt to predict the unpredictable (and complex) world I’m living in to. This is right inside the book Keith and I have just written, so I have a really strong theoretical grasp on it. But now it’s a life or death question as well.

You see that I am far from alone in pondering this question. The New York Times this week had a cover piece (at least on their homepage) about the value of predicting breast cancer via mammogram (http://www.nytimes.com/2014/02/12/health/study-adds-new-doubts-about-value-of-mammograms.html?src=me&ref=general). The conclusion there is that early discovery of breast cancer with mammograms leads much more to unnecessary treatment than to saving lives. Knowing as much about breast cancer treatment as I now do, that is a serious risk—surgery and chemo and drugs are all terrible.  And still, wouldn’t you want to know if there was a tiny tumour growing in your breast? Wouldn’t you want to know if you had DCIS, the very earliest signs of cancer? Wouldn’t I have wanted that before, wouldn’t I have chosen to put myself into the potential over-treatment category so that I could also be in the potential life-saved category?

Now I am looking at a full body scan with a heavy dose of radioactivity, that will show me whether there are any tumours of 5mm or more elsewhere in my body. There are lots of risks of false positives, which (like mammograms) lead to more tests, to the horrors of waiting  (For a brilliant piece on the terror that comes from waiting, see this http://www.theguardian.com/lifeandstyle/2014/feb/12/henning-mankell-diagnosed-cancer). There is a much simpler test (though not yet available in NZ) that will tell me whether I have Circulating Tumour Cells (CTCs). If the test shows that I have none, that is a very good sign for a long life. If I have two, I should start to worry. If I have four, the research suggests my chances are grim indeed. Do I want this information? Sure I’d want it if I’m in the safe pile, but do I want it if it tells me bad news? I have to say, I seem to be failing all of the medical tests lately. I have become a reluctant test-taker indeed.

But after the data, you have only statistics. Only other women who have died before you and ones that are still alive. Every study showing ten-year mortality rates is necessarily 10 years or more old.  A decade is a long time in the world of cancer. A percentage is a study of a population. I am a person and not a statistic.

My surgeon was clear on the phone that I might already be in the nearly 50% of women with stage II cancer who would never die from it without a single extra treatment. 50% of us leave surgery cured and don’t need chemo and don’t need tamoxifan with all their associated miseries. But which 50%?  Experts have no idea. All the extra tests I’ve taken so far say I’m not in the worst quartile, and not in the best one. Middle of the road cancer, middle of the road risk.

The tiny percentage of women with stage II breast cancer that leave surgery with metastases already in other organs have a dire prognosis. But there is evidence that in some (very few) women, those other tumours just go away. There are endless stories of people given six months to live who dandle their grandchildren on their knees 30 years later. How does one get into that group?

We cannot get information today that will tell us about our future. No matter how good the information is (and while cancer information has progressed so dramatically, there are still so so many things experts do not know), we cannot peer into a medical crystal ball and see whether this thing or that one will kill us and when that might happen. So how many crystal ball proxies do we want, and at what cost? How many thousands of dollars of tests, how much radiation, how much terror?

I want to guide my future well. I want to find out and do the responsible things. I want to know what there is to be known and let emerge what there is to emerge. I am taking advice from the experts who disagree about what is the best course of action. The future is not knowable, and yet it is influence-able.

This is what we all face every day. We don’t always know that it is life or death, but we all face a future that we cannot know and have to decide what to do anyway, what information to collect, which experts to trust, which moves to make today that might give us a better tomorrow. I’ll be exploring this unknown territory and how it might link in with the world of organisations as this time progresses. And until then, you and I will all muddle through in an uncertain world.

One thought on “Living uncertainty”

  1. Janet Horton says:

    Thinking of you, Jennifer. The news in the Cultivating Leadership newsletter stopped me in my tracks and I have found myself thinking about you over and over again. Your reflections are full of strength and vulnerability and wisdom – you are always teaching me something. Stay strong, stay you, and thank you for being willing to share so much of your private experience with us.

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