There is harm in giving false numbers

By | July 25, 2015

This week, Ann did the footwork (thank you) and posted about a false statistics that has been made very popular within the breast cancer blogosphere. I must confess, that I am guilty of using this false statistic. But worse, this false statistic has caused me great amount of unnecessary stress and emotional harm.

What is this statistics? It is the “30% of early stage breast cancers go on to metastasize at some point”. I’ve seen many different articles that talk about how “early detection” doesn’t necessarily save lives, because we do not know what is causing metastasis, and some people who do everything right still get metastatic disease. However, saying that this will be true for 30% of us is just plane scary. It adds to the fear mongering that is all too present in our culture today.

One of the biggest challenges of being a part of the blogging community is that of critically assessing anything that is posted on blogs. It is something that I often do, but for this one statistic, I did not. I found it ever pervasive, and thought that someone must have come up with that number some how. It is also too easy of a statistic to use. It is useful when trying to make a point. But, it also does a lot of harm – and that harm is mostly to those of us who have undergone treatment for early stage disease and are trying to get on with our lives. We don’t need that extra fear of 30%, especially when the number might actually be much lower for a given person.

If there is no national register for metastatic disease, and no data on how many people progress to metastatic breast cancer, then how the heck could one even come to that number in the first place? There would be no way to know that information.

So, now I need to reprogram my brain. I need to remind myself that the number is a false one. My chances of survival are much greater than 70% (or truly, since I had three primary tumors – .7*.7*.7 = 34% – yikes). The reality is that I did catch it early, and I did treat it aggressively. I have no idea what my prognosis is, but my care team are certainly not treating it like 34% …

This got me looking. According to the Komen website, someone in my age rage with ER+ breast cancer has a 94% survival rate. Since I had three cancers, one might wish to multiply this so (.94*.94*.94 = 86%) – which is a far cry from the false statistic above.

The other challenge with the current statistics is that there have been significant advances in the treatment of HER2+ breast cancer (not the kind I have). So, women with HER2+ cancers who would have had a significantly poorer prognosis 10 years ago are expected to live cancer free for a lot longer. In this case not enough time has passed – not enough people who had HER2+ cancer, and received the targeted therapies, have died of natural causes yet – they are still alive. So the whole statistic in this area is hugely unknown.

As a survivor, the only statistic that really matters is 1 – that is, it really doesn’t matter what the numbers fall out to be because you already drew the unlucky straw, and as my oncologist is want to say “it is what it is”. However, propagating a false statistic in order to try to encourage people to donate more money to research (or funnel more money into metastatic research), does not serve our community well. It only causes to feed the flames of fear of recurrence and progress – flames that most of us do not need fed. We’ve been fighting the fire long enough, we need to put it out and move on with our lives.

2 thoughts on “There is harm in giving false numbers

  1. Diana Decker Kuster

    Becky,

    I want to thank you for focusing on validating the statistics. But I would love for you to educate our blog community of the importance of participating in surveys. I currently work for the census bureau and this year’s national health interview survey NHIS has a portion of the survey focusing on cancer. Anytime I see the opportunity to participate in a survey for breast cancer I always volunteer. Unfortunately, they often pass me up… I am a lucky early detection survivor. I had high grade comedo necrosis dcis ductal carcinoma in situ, my right breast had multi-focal calcifications. I tried biopsy and three lumpectomies but they could not get clear margins. I chose to get a bilateral mastectomy and a diep flap reconstruction. There was not radiation or chemotherapy or adjuvant therapy. So I am the lucky one. But I still drew one of the long straws. I had breast cancer. It did not become invasive in my breasts or my lymph nodes. I no longer have any breast tissue and there is not any feeling in either breasts just two mounds of stomach tissue that remarkably look like two breasts. I am focusing on staying healthy as much as I can. I try to eat nutritiously and exercise as much as possible. There is so much living to do. I thank you for your blog and you inspire me to try to do my part in not being a statistic which is part of the problem but to also try to be a part of the solution. Staying educated and doing my part in sharing this journey with others. Each of our experiences can help others on their journey. Thanks for doing your part too. Happy trails….. and I hope you had a Happy Thanksgiving!

    Reply
  2. nura17

    Just notice that the Komen statistics talk about 5 year overall survival, not lifetime change of recurrence, it’s quite a big difference…

    Reply

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