The emotions will hit you out of the blue — even years later

I had a completely different post planned for today. I stuck it in the vault for the future because something happened the other day that took me completely by surprise and I wanted to talk about it.

I recently decided to go back to grad school and finish the masters that breast cancer interrupted. While it’s my third masters, and you would think I didn’t really need it, it’s actually the only one that makes any real sense – and the only one applicable outside of academia. Now as it happens, I’m actually going back to teaching college full-time this fall and I’ll be using these courses to switch disciplines. But if I decide in the future that I don’t want to teach, an MA in communication studies is still useful (unlike the other two MAs).

So what happened is that, in one of the classes I’m currently taking, we have example articles to read each week that showcase a particular kind of research tradition or theory. In week three, one of the articles profiled a research project in which the author analyzed the messages in media stories about breast cancer in Ghana between 2011 and 2015. Her goal was to identify common themes so she could think about what impact those messages had on women fighting breast cancer, or those who had survived. Now, a few similar studies had been conducted in places like the United States and Europe. But in 2015, when she began her research, no one had analyzed the messaging anywhere in sub-Saharan Africa, Ghana included, and the analysis in smaller, less developed nations worldwide was very scant. Still is, for that matter. Since I’m pretty passionately interested in the ways we talk about breast cancer and the things that we consider okay to discuss publicly, I was really excited to read this article.

I was not prepared for the fury that lit up my entire body and brain as I read because it was the first time since my diagnosis 40 months ago that I’ve gotten truly mad. Other emotions? Sure. I’ve had plenty of those. But anger just hasn’t been one I’ve experienced in all this. Until now.

See, here’s the thing. The United States is supposed to be significantly more advanced than Ghana. And when it comes to medicine and medical procedures, we are. But when it comes to the messages we send about breast cancer, particularly in the public arena, there are more similarities than I realized. Now, granted, this research is 10 years old, so some things might have changed in the intervening time. But realizing that actually only made me madder because some of the things that crop up in the messages of 2011 and 2012 in Ghana are still cropping up in the media today in the US.

It’s not everything, by any means. At the time of the study, public discourse about breast cancer was very new to Ghana and there was still a lot of misinformation about causes and cures that would be hard to imagine people believing en masse in the US. For example, the supernatural is still very much a part of Ghanaian culture, and it was, at the time, a widely held belief that breast cancer was caused by witchcraft. That’s not something we’d likely see in the US. But it’s not unusual for people diagnosed with breast cancer here to wonder if they did something that caused the cancer – or failed to do something that could have prevented it. And if you think about that for a while, you begin to see a common underlying theme.

But a few of the messages really jumped out at me. One was the way in which breast cancer advocacy and awareness took place via what the author called “fanfare.” This had to do with the marches and the T-shirts and everything turning pink in October. We do the exact same thing here. For the first couple of years post-diagnosis, it didn’t bother me, but then I started to understand why some survivors get frustrated with the fanfare, and I found myself becoming increasingly frustrated with it as well. The marches and the merch are fun and upbeat and almost feel like a party and when you’re new to breast cancer, I think most of us need that. But after a while, when you realize this is not a short jaunt, but a lifelong journey for many of us, the celebration gets old and you start to wonder how much closer to a cure we would be if the general public saw the grim reality of breast cancer instead of the pretty pink. You start to wonder if we would have treatments that were equally effective but less grueling, if people would have more compassion and empathy and understanding toward people who are struggling long after they’re supposed to be “done.”

Another theme identified in the study was the focus on breasts as sexual objects and objects of lust, specifically for men. It’s far more pronounced and blatant in Ghana for cultural reasons, but that is a factor here as well. What husbands and partners and spouses will think of the scars and the reconstruction and the downtime and the illness and the treatments and the possible baldness and so on and so on and so on — that’s a real concern many US women have. Even those of us who firmly identify as feminist. There’s a very strong link between breasts and women’s conception of themselves as women and as sexual beings. Not all women, of course, but many, possibly still most. A lot of us don’t think this is true for us until it happens. I didn’t. But it’s a sucky thing to have to worry about or even think about when we should be thinking about how we could die and about the short- and long-term effects on our health. Oh yeah, and on how to get better, how to be healthy, and thrive.

The research also found a lot of stigmatization of breast cancer in Ghana, a lot of taboo around discussing it. It is (or at least, was then) very common for no one outside a woman’s immediate family to know that she’s gone through breast cancer – and it’s very common for women to not know that there’s a family history because they don’t talk about it. And because of that stigma and because they don’t talk about it, breast cancer is discovered on average far later in Ghana and far far more women die of it than they do in the US. There’s an incredibly strong emphasis on some type of reconstruction there. Women are expected to appear “whole,” at least in public. I think the knee-jerk reaction for a lot of westerners is that that’s antiquated thinking, but the fact is, it’s pretty prevalent here too. Breast cancer still carries stigma for more people than you would think and the taboos around talking about it are much stronger than people realize. Even when those taboos are subtle or disguised as simply preferring privacy, the effect is the same: we don’t talk about the realities enough, and we don’t talk about the real effects on women’s lives.

Reconstruction is also a major component of the conversation in the US. While only about 55% of US women have reconstruction post-mastectomy and the number of younger women who’ve elected to go flat has increased in recent years, the vast majority of women under 65 still opt for reconstruction. I suspect that, if you asked, you’d find most of us never even considered going flat. I didn’t at 49 and I’m not even a particularly body-conscious person. I mean, I knew it was an option, obviously, but in my head, going flat was mostly something for septigenarians, octogenatians, and super fit runners. Now, bear with me because I’m going to get all mathy for a minute. So, consider that the overall life expectancy for women in Ghana is not quite 64, thirteen years younger than in the US – and also that the average age of diagnosis in the US is 62 with less than 10 percent of those diagnosed being under age 45, but in Ghana the average age of diagnosis is about 48. When you adjust for those differences, you realize that US women who are diagnosed at the same stages of life as Ghanian women mostly reconstruct too. That’s a quick-and-dirty analysis that would never make it into a scholarly journal and the situation is much more complex and nuanced than I just made it, but you get my point. We mostly want boobs again after we lose ours – or feel like we need to have them – regardless of where we live.

There’s absolutely nothing wrong with choosing reconstruction. But I do wonder how many of us even seriously consider that we have a choice. And, while you can find some cool, empowering videos on TikTok and YouTube about flat life, women who choose that option still get a lot of flack and judgey questions if they’re open about it or don’t use some kind of prosthesis – especially if they’re under about 65.

So anyway, I read this article and it was excellent, interesting, well done and highly informative (in fact, the professor who wrote it teaches in my program and I literally just changed my course schedule and degree plan so I could be sure to take a course with her). But also this article made me angry and sad and frustrated and a few more things I’ll be bringing up in therapy this week because here we are 10 years later in a supposedly “developed” country and we’re really not all that far advanced when it comes to how we talk about breast cancer. And because of this, fighters and survivors suffer. Our experience is too often reduced to T-shirts and wigs and what kind of reconstruction we’re going to choose. It’s absolutely better than it used to be. If you need proof of that, pick up Audre Lorde’s The Cancer Journals immediately. In fact, do that anyway. Excellent book. But anyway, the conversation about breast cancer in the media and the general public is the one part of this unasked-for gig that’s infuriating to me. In fact, it was more infuriating when I wrote this than when I first read the article. Somehow, the longer I live as a survivor, the more intense some of the emotions about it become – the positive ones and the negative ones. I am both madder and more grateful. I cherish the good parts even more than I did when they happened, but I am sadder about the losses than I ever thought I would be.

I wonder what it will be like when I hit five years and 10 years and 20 years (assuming I do). I wonder if the emotions will still well up out of nowhere and take me by surprise in their intensity. I wonder how many people who have been through this don’t admit to this part of the reality, even to themselves. I wonder how many people who haven’t been through it even realize this part of the journey exists. Mostly, I wonder if we’ll ever stop talking about breast cancer – and not talking about it – in ways that do more harm than good.

Note: The article I reference in this post is “The breast cancer fanfare: Sociocultural factors and women's health in Ghana” by Dinah A Tetteh. You can read it on the NIH website here. Dr. Tetteh researches and writes about health communication, ovarian cancer, cancer survivorship, and other women’s health issues.

PS: I drafted this post a week ago. I’m still mad.