WATCH THOSE SCREAMING HEADLINES

Have breast cancer deaths really dropped as dramatically as everyone is leading us to believe???

When I was a young teen, there was a running joke among a group of my friends. One of us might say something silly and another would caution the rest of us,

See? That’s how stories start!

USA Today posted a story late yesterday. The screaming headline?

Breast Cancer deaths drop dramatically over 20 years

And that’s how stories start, and now we have a game of telephone circulating the internet and the social media channels. It’s World Cancer Day and here we have a skewed story that is misleading because it only tells half of the story. We need to back things up just a bit to get a more accurate picture of what is really happening.

Using SEER data generated by the NCI which is accurate and reliable, USA Today chose the feel good story instead of the real story. They also chose to preclude men from the statistics adding insult to injury to yet another stigmatized patient population as evidenced by the blog of Oliver Bogler and Men Have Breasts Too, a documentary now in production. Even CBS shined a light on male breast cancer in an episode of the popular comedy Mike and Molly.

That’s a message for another day. Today, it’s about clarifying that headline. For starters, and as usual, it’s true but it’s also very misleading. Responsible journalists tell the whole story, not just the part of the story they wish to highlight. Thanks, at least in part, to the pervasive culture surrounding breast cancer, we have come to believe we have achieved great success.

Breast cancer is not the great success story it is portrayed to be, it’s simply the one that’s been best marketed.

Stories like this solidify this smoke and mirrors success and in doing so, harm the most important population of breast cancer patients, those whose disease has spread beyond the breast: The Stage IV patients, the ones who actually die from the disease. The end game with cancer, with any cancer, is to die of something else completely unrelated to the cancer or any of the treatments used that may cause side effects like heart damage. And, to have treatments that allow good quality of life. We need to get hit by that proverbial bus so many of us are told about when we express fears of dying from the disease. I know you know what I mean.

USA Today, to begin with, cites a 34% reduction in death. Those numbers, expressed as percentages mean little to many of us. Does that mean that for every 100 women, 34 won’t die? What is the context? Statistics are a funny thing. They can be manipulated to punctuate a point. Thankfully, the numbers the rest of us, their target audience, might understand were inserted immediately after the percentage.

In 2010, deaths attributed to breast cancer were 26.1 per 100,000 women. In 1990, the number of breast cancer deaths was 34 per 100,000. Yes, that’s a significant change and those 8 women for every 100,000 amounts to lots of women.

I will concede that point despite the fact that I think, given the amount of money that is thrown at breast cancer every single year, we could have made more progress than 8 women. Again, another story for another day. Follow the money. Are we helping those in need with those dollars? Are we doing life saving research with those dollars? Or, is the lion’s share of that money going toward awareness campaigns in communities where we no longer need awareness campaigns?

The more important issue with the USA Today piece is the fact that they did not go back far enough to present a true and accurate picture. Interestingly, there is a graphic in the article that shows progress from 1975 but the reality? We need to go back to 1970 and take a good look. So let’s do it. This is a chart of what went on starting from 1970. The deaths per 100,000 women look like this:

1970 28.4

1990 34.0

2000 29.2 (This is what we have to show after 30 years?????)

2010 26.1

I have a few observations and then I’ll let the chart speak for itself. The spike between 1970 and 1990 is huge. Over the next ten years, between 1990 and 2000, we were basically back to square one. Thirty years between 1970 and 2000 and that number is, for the most part stagnant.

When we analyze the overall drop in death, we should not be looking at 8 women per 100,000. Let’s look at the true picture. From 1970 through 2010, the drop is little more than 2 women per 100,000. That’s a big difference from this so called dramatic decrease from the screaming headline and it’s one that must be noted.

Actually, we were better off in 1970 than in 2000 and that’s pretty damn pathetic when we factor in the pink ribbon and the money generated from walks and events and merchandising and AWARENESS. Being aware didn’t really do too much to save lives, now did it?

The voices of those with metastatic disease, one of whom happens to be my mom, are forgotten. It is their voices that must be heard. It is the needs of this population that are most urgent and when it comes down to it, the success stories are not nearly significant enough. The gains in overall survival time for the metastatic patients remain just slightly better during this same 40 year period. Yes, progress has been made but the gains are incremental at best, and apply to disease with very specific molecular signatures.

The majority of breast cancer is driven by estrogen and those cancers can and do recur as distant metastasis well beyond the magic five year mark. Any one of us diagnosed with breast cancer is potentially one scan away from metastatic disease. Up to 30% of us living with a past diagnosis can, will and do metastasize regardless of the stage at diagnosis. In other words, even found at stage ZERO, the cancer can recur and turn into a terminal illness with a very poor prognosis.

Frankly, I’m tired breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or most times but not all the time and that part of the messaging is conveniently left out of every discussion about early detection. It’s buzzkill, it detracts from the message that mammograms are helping save lives. Mammograms are detecting cancer earlier and earlier thanks to the constant improvements being made in the imagine, but early detection is just that. Early Detection. Early detection is not a guarantee.

Look at the numbers, they don’t lie. The end game is death and the bottom line is this.

By and large, the number of deaths from breast cancer has remained unchanged since 1970.

Facts don’t lie, friends do die. Despite the bill of goods we are being sold, this is the reality that is breast cancer. My opinion? A publication so widely distributed and read, a publication like USA Today, should tell the whole story or no story. But maybe that’s just me…..

NOTE: I proofread my own work and often publish within moments of completion to comment while things are still relevant. Without another set of eyes, there may be typos or grammatical errors. Advance apologies.

    AnneMarie Ciccarella

    Written by

    Patient research advocate. Passionate abt #clinicaltrials, evidence based care, empowering others to self advocate. Priorities #Cancer, #mentalillness + …