Crystal balls

I was looking forward to my oncology appointment yesterday in the way that sentence is possible: there would be progress and information and clarity. These are things I crave right now, probably more than I have ever craved them before. Alas, it was not to be so, and I left so knocked off my perch that I needed to go home instead of closing the leadership program Keith and I had been teaching.

There were a variety of unsettling things about the appointment. Some of them I totally expected: hearing about chemo is truly terrible. Everything you think about how bad it is is an understatement. Or at least, is a possible understatement. They have to tell me every single thing that might go wrong and the various (few) ways to protect against it. The body is under siege for three months, and you want the cancer to lose the battle as the rest of you survives. But sometimes that’s a margin call.

Some of them were more systemic: After having had my surgery in the private health system here, where Stan (my fabulous surgeon) is incredibly proactive and available, the public system feels much more like a meat grinder. We were met by a lovely young interning doctor (studying to be an oncologist) who said she’d “begin” our appointment. She was fantastic—warm and engaging—but held the tough questions for the official oncologist we thought we were seeing. After 90 minutes with her, she said, “Well, I think Catherine [the head oncologist with whom we thought we would be meeting] would at least like to meet you, so let me see if she’s free.” And we had 15 quick minutes with the oncologist who will be the one we’ll see again (because the intern will rotate into someone else’s team by the time the chemo begins). In the meeting, there were a couple of things we were confused about, and it was both hard to get clarity in the meeting and is also frustratingly unclear about how to get clarity in the future. The next time I’m scheduled to meet Catherine it will be moments before the chemo IV gets hooked up. In between, I’m to talk to a regional oncology nurse. I am adrift inside the public system and feel amazingly fortunate to be able to mobilise my fabulous network (which I did, on the train home).

The biggest issue was about whether to have a full PET-CT and bone scan to see whether there are established tumours that have already metastasized elsewhere in my body. It seemed a heavy dose of both radiation (which causes cancer of course) and uncertainty for the very small chance that these tumours might be active elsewhere. (And silly me, I had thought that this would actually be an impossibility since my lymph nodes were clear.) Because we were going quickly, we must have misunderstood Catherine’s answer that there was a 10-20% chance that these tumours had already metastasized. I asked a follow up question, she affirmed that number, and we left the appointment thinking that the odds of my living five more years were smaller than we had thought they were going in. I wept on the platform as I was waiting for the train.

This number is wrong, by the way. Very wrong. You and I can both breathe again. I have followed up with Stan and with Kathy the miracle oncologist in the US, and Mom has done research, and I have breathed through it. The odds that there are already tumours elsewhere are far far less than 10%. But, in fact, they are greater than the 0% I was thinking. 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 predict the unpredictable (and complex) world I’m living in to. Keith and I have just written a book about some of these ideas, 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 today 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 (as in the piece I posted a couple of weeks ago) is that early discovery of breast cancer with mammograms leads more to unnecessary treatment than to saving lives. Knowing as much about breast cancer treatment as I now do, that just sucks because surgery and chemo and drugs are miserable. 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, to the unimaginable (so far to me) terror of seeing the envelope of my life shrink down to less than five years, (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, new

test (not yet available in NZ but Mom has figured out how to get it) that will tell me whether I have Circulating Tumour Cells (CTCs). If the test shows that you have none, that is a very good sign for a long life. If you have two, you should start to worry. If you have four, the research suggests your chances are grim indeed.

And the readers who write to me with their stories and their miracles will tell me that even after the data, you have only statistics. Only other women who have died before you and ones that are still alive. Every ten-year study of what percentage of women died is 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.

Stan was clear on the phone last night that I might already be in the nearly 50% of women with stage 2 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%?

The tiny percentage of women with stage 2 breast cancer that leave surgery with metastases already in other organs have a dire prognosis. But there is powerful 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 (and I am grateful to those of you who are reading who have shared your stories with me—I call them up like a guide star when I am awake in the middle of the night). 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?

So I sit with this question today, as the sea froths white and the clouds disappear over the hills. I drink my green tea and eat my heavily-tumeric-laden curry (ahh, the amazing benefits of turmeric and green tea—not necessarily together!). 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. (There is also broad disagreement about radiation, another kind of insurance for the future that comes with a price, but I’ll think about that next week.) I am reading articles my mother recommends and staying away from the ones she says not to read (and what horror—and love—to protect your daughter from these frightening studies by absorbing them yourself). The future is not knowable, and yet it is influence-able. And in the confusing space between those two things things, I feel gratitude for those I love and delight for the opportunity to be alive each day.  I drink my tea and stare out at the waves.