I’m not a statistician and I struggled in the one statistics class I had to take in college. This is not about how to calculate or how to understand statistics as I’m so not the person to hand out that information. This post is to explore the uneasy relationship those of us with Stage IV metastatic breast cancer have with statistics.
When I was initially diagnosed, my doctor shared some statistics with me. I realize this is not everyone’s experience since some doctors are wary of scaring patients and legitimately, no one person’s life can be explained by a statistic. However, for Type A people like me, knowing how much time I have to plan is pretty significant. I turned to the known statistics to try to get a sense of how much time I really had left. My current medical oncologist isn’t a fan of looking to statistics to try to plan and so I’ve been left to muddle through the morass on my own.
Turns out, there are a lot of different perspectives and statistics drawn from different data sets out there. Makes it a little difficult when one is looking for data to rely upon to make decisions. Plus, I learned a few things about how statistics can be manipulated and that means I tend to look much more carefully at what others claim to be reliable statistics. I’ll never be a statistician; at the same time, I’ve learned a little too much about interpreting data and I’ve become even more skeptical of those that confidently state a statistic without support.
At the end of the day, I’ve discovered that no one really knows the answers to the questions that I would like to have answered.
And that’s really frustrating to a planner like me. We live in the chunks of time between each scan because that’s what we have to do. We wait to make decisions about traveling or activities until I know if the cancer is behaving itself. We all hold our breath when a scan comes and we wait to find out what our life will look like for the next few months.
This living in the increments of time between scans has been, frankly, awful for everyone involved. This captivity to information; a reliance on a broken system, is traumatic in ways that are hard to articulate. We are no longer free agents, able to make the decisions we need to for our family. When I want to do something new, one of the steps that has now become a necessity is to ask my doctor. I think I hate that the most. Don’t get me wrong, my doctor is great; at the same time, I don’t give away my decision-making authority easily.
And yet, that’s just one more thing that MBC has taken from me.
Back to those statistics … the one that scared me the most was that the median life expectancy for someone diagnosed with MBC is 2-3 years. The next one that scared me is that at diagnosis, each person has a 24% chance of living 5 years. Once a person living with MBC has passed these milestones, the likelihood of living longer starts to climb. The likelihood of becoming an outlier grows with each year lived past the diagnosis. There are obviously lots and lots of details that adjust one’s life expectancy, like age or subtype or disease load, so these numbers aren’t as reliable as one would hope.
Here’s another statistic that I do like: one study showed that people who have bone only mets like me live an average of ten (10) years after diagnosis. While this is nowhere near the amount of time I want to have with my kids, it’s better than 2-3 years, I suppose.
My conclusion is that statistics are only truly helpful in certain contexts. The statistics I described above are ones that I use often in my advocacy efforts because they are shocking and compelling. Applying those same statistics to real life are just more problematic. Putting the statistics in the right context makes them more palatable.
No Half Measures 
I’m not a math person, so statistics is like a swear word to me. But I’m grateful for you taking the time to tell me the stats you did. I’m a bone only Stage 4er, too.
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Love and light to you! Thank you for reading and commenting.
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Our statistics are a countdown. And change all the time though it does seem the ones that make good press without explanation are the ones that handcuff us to the most fear. For instance the age of women who die in that 2/3 year window are far older than we are. It’s not even an asterisk to the number. Nor that they do not count women with metastatic diagnoses if it’s a secondary cancer. Or that we are not counted anymore after 5 years… confusing and frankly very misleading statistics without much explanation for the lay person. 🤔
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I totally agree!!
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Scans are like slot machines, you never know what’s going to happen when you hit the spin button but you are fully aware of the odds. Living between scans is our way of life unfortunately.
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Yes! It’s been a hard adjustment for me since I’m a planner. ❤️
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Thanks for sharing your insights. For me, statistics are a double-edged sword. Stats are based on groups of patients which means as an individual patient you’ll likely fall somewhere in that line….but where? Working with inflammatory breast cancer patients (1/3 are de novo mets) I remind them they are an “N” of one. They will fall somewhere in that group of patients that make up the stats but no one knows where. Statistics are useful when making a point to the public who likely don’t have a clue but tough for individual patients unless they reinforce hope.
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Agreed! I think this is why most doctors don’t dwell on them.
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I tend not to give cancer statistics too much of my attention. I am fully aware of them, but I like to avoid them as they are never in my favor. They physically cause me to tense up. They make me feel like a number. Yet, they are there.
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Agreed. I’ve learned not to apply them so much to myself but they are handy for advocacy!
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Hi Abigail,
Really good post. I am not a statistics person either, but clearly the statistics regarding mbc survival rates suck. I think the generalized numbers typically given are crucial for the public to hear in order for them to get a grasp on what a mbc diagnosis means. At the same time, each patient’s situation is unique and complicated. The thing, well one thing, that continues to baffle me is why mbc numbers are not kept better track of (or even tracked at all) when there’s a recurrence. How can this be? I do not get that. What good are stats without those numbers?
As always, yours is a voice of reality and reason, and you are most definitely so much more than a number. x
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I completely agree. We are not counted accurately. I find that the statistics are good for advocacy efforts and that’s pretty much it. ❤️
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For this of us who like to process things intellectually statistics give that false sense of some comprehension of the mystery that is each individual’s journey. In the aggregate they are useful, for the individual they are actually pretty meaningless.
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Agreed.
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I actually enjoyed my statistics class. And I am always skeptical when provided statistics. Which makes listening to the current administration difficult. I to have outlived the statistics I first read about. I also have a family history of being the outliers when it comes to health. We seem to get everything, but somehow beat the statistics.
The main reason I wanted to reply its because I know you know Francesca Battistelli’s music. When you mentioned living in the increments between tests and scans, I immediately thought of the song, “The Time in Between.” And since the thought came to my head, I figured it needed to be shared with you. It’s so fitting.
May the fourth be with you, and not the bad fourth… And may you continue to break every statistic! Crush them all. You’ve got this! ♥️
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I hate that I can’t edit grammatical mistakes. Especially when they are Siri’s mistakes and not mine.
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Lol. I hear you.
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❤️❤️
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I guess I never realized how statistics could give one both a clearer look at potentialities, and at having hope ❤️
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Pretty amazing, huh!?
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It is! Thank you, Abigail! 💕
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❤️
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Numbers and stats are a double edged sword. I really wish we would have the numbers to help push us forward vs the flooding of numbers that cause us despair. ♥️
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I completely agree!! ❤️
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I read a really good book once called lying with statistics. Unfortunately, while statistics are supposed to give someone an idea of the probability of an action, depending on who is giving the statistic. A bias can be slanted in there. Thank you for sharing your heart.
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ooooh, what a great name for a book! I’m definitely looking that one up. Thank you for sharing! 🙂
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Hi Abigail,
I learned a long time ago not to pay attention to stats that weren’t relevant to urgent decision-making. If I’m weighing odds of the effectiveness of a particular medication, I’m all ears. But if the stats reflect the chance that I’ll be alive in ten years, I bow out. It’s helped me to maintain my sanity since 1993, when I was diagnosed for the first time with triple-negative breast cancer (which came with, you guessed it, a frightening statistic).
Thanks for stopping by my blog, btw. Anyone else who’s interested in cancer news is welcome to visit me at Cancer Hits the Streets@wordpress.com.
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Truth! Thank you for sharing — it’s hard to know what to do when doctors share them as truth; I’ve learned a lot more about questioning the basis and methods, even though I barely passed the required statistics class I had to take in college!! I love your blog and would encourage all of my readers to follow yours as well. 🙂
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