Are We Stigmatizing Cancer Patients?

Since my breast cancer diagnosis, I’ve kept a close eye on both the popular and scientific literature regarding potential causes of breast cancer. There’s a lot of new information coming out now, but the core recommendations for lowering one’s risk of breast cancer remain the same.

In fact, current research is reinforcing them: keep a lower weight, eat more fruits and veggies, exercise, don’t smoke, don’t drink. While I’m oversimplifying, that’s the gist of the message that’s being disseminated. Some articles go a step further and make bold statements. One in particular stressed that cancer was preventable through lifestyle changes. Anand et al., 2008 claims: “cancer prevention requires smoking cessation, increased ingestion of fruits and vegetables, moderate use of alcohol, caloric restriction, exercise, avoidance of direct exposure to sunlight, minimal meat consumption, use of whole grains, use of vaccinations, and regular check-ups. …[W]e provide evidence that cancer is a preventable disease that requires major lifestyle changes.”

Of course, when I read these recommendations, all I absorb is, “You irresponsible ass, you’re not doing enough to protect yourself!” The fact is, I was doing all that and more, and I still got breast cancer. If you’ve read some of my other posts, you’re probably sick of hearing me say it. I shouldn’t have gotten breast cancer according to all the guidelines out there.

So here’s the issue that I have with all these helpful suggestions. They keep repeating lifestyle changes that should be implemented to lower your cancer risk. Let’s face it, it doesn’t matter WHAT disease you’re trying to avoid, you should maintain a healthy weight, exercise regularly, not smoke and so forth.

We can’t automatically assume that if someone has cancer, they must have been engaging in unhealthy behaviors.

The stigma of cancer comes in when we start making assumptions about WHY someone gets the disease. Given all the purported connections with lifestyle for breast cancer, that assumption may be that the woman (or man) brought it upon themselves. The more that we stress lifestyle changes, the stronger the connection becomes in the mind of society: if you get cancer, you were clearly doing something wrong and it’s all your own fault.

I will be the first to stress the importance of doing everything you can to improve your health. But we have to accept that given our current lack of understanding regarding the exact agents that bring on cancers, we cannot put the “blame” squarely on the shoulders of the patient.

Consider lung cancer. We’ve known for a long time now that there’s a powerful connection between lung cancer and smoking. But what of the non-smokers who get this cancer? According to the American Cancer Society, “As many as 20% of people who die from lung cancer in the United States every year have never smoked or used any other form of tobacco.” Isn’t it tempting, however, to immediately jump to the conclusion that if someone has lung cancer, they likely deserved it, since so many lung cancer deaths are attributable to smoking?

While smoking does account for 80% of lung cancer deaths, that’s only a general statistic. Statistics work well for populations, but they can be strikingly inaccurate when it comes to pinpointing causes for an individual. For example, one of the youngest known cases of lung cancer was in an 8-year-old girl in Jiangsu Province in China due to some of the worst air pollution on the planet, not to a pack-a-day habit. So we need to be careful about the assumptions that we make.

Back to breast cancer, if you were to construct a picture of what a “typical” breast cancer patient would look like based on the recommendations for what to avoid, you’d come up with an overweight, sedentary, smoker/drinker with a bad diet. But if you start picking this apart, you find that these predictions don’t hold up. For example, the connection between breast cancer and weight is complicated. In fact, many of the women I know with breast cancer had healthy habits, and most did not look like the picture that we constructed at the top of this paragraph. In contrast, there are numerous women with unhealthy habits who remain cancer-free.

Statistics work well for populations but are lousy predictors of what actually happens to a given individual.

This message that we send about how to lower your risk of cancer raises the possibility of stigmatizing the patient. It suggests that we have control over our outcome, and this is simply not the case. Currently, we don’t know enough about what causes cancer and what to do to truly avoid it. And if we do what we can to lower our risk of it, that only means statistically lower our risk. That doesn’t guarantee that we won’t get the disease.

My painful personal lesson was to not assume that I could avoid cancer by following health guidelines to a “T”. At the same time, I had to shake the notion that I had done something wrong to willfully bring cancer upon myself. Ultimately, I had to let go of both control and responsibility because neither one had a role in this disease for me.

The best we can do is live as healthfully as possible, accept the uncertainty that comes with a situation this complex, and not judge those who have been unfortunate enough to fall prey to the disease.

Invisible Effects: Body Image, Part 3

In Part 1 of this series I wrote about breast loss (which I ended up not having to deal with) and how strongly I equated breasts with being female. In Part 2, it was about my fear of having no control over my body and being susceptible to weight gain as a cancer survivor.

In Part 3, I’m writing that my body reacted in a way completely opposite of what I feared, and I managed to regain some semblance of control.

As mentioned, many women with breast cancer, particularly those whose tumors are hormone receptor positive like mine, put on weight. On top of the “my-out-of-control-body-is-killing-me” feelings brought about by cancer, the threat of runaway weight gain added to my frustration.

Yes, this was another example of how, throughout my fact-finding research, I took to heart what I read and immediately assumed that if it happened to others, it was also going to happen to me. Except that it didn’t. Just as how statistically I shouldn’t have gotten breast cancer, I also shouldn’t have ended up almost 10 pounds below where I started pre-diagnosis.

My body is quite reactive. If you’ve read my posts about how I respond to anxiety, you know that I shed weight quickly. I am not an emotional eater; I am an emotional non-eater, and more often than not don’t have to fight cravings. I have to fight a lack of appetite

As weird as this may sound, the resulting weight loss was one of the strongest indicators that I wasn’t completely out of control, that my body hadn’t completely turned against me. And more than that, it was another reminder that my situation was not typical. So by maintaining a very doable 6 day/week workout schedule, I broke through the mentality that what others experienced was necessarily what I would.

Right side of my ribcage. I can see my serratus and external obliques, but have to focus on building strength, not losing weight.

In addition, and arguably more important is the fact that cancer recurrence and episodes of lymphedema have been associated with higher weight levels (see this Susan Koman web article addressing this issue, including journal references). According to a bioelectrical impedance analysis (BIA) body fat monitor, I’m sitting at about 20% body fat. The actual number doesn’t really matter, since these monitors are notorious for being inaccurate. What matters is that those numbers are stable and that I’m able to build muscle.

What also matters is that with my level of activity both pre- and post-diagnosis, recovery has been quite good. I feel strong. I feel lean and fit. My sense of self-efficacy is high. And I’m finally able to exhale after holding my breath about all the things that were happening to my body.

Piece by piece, I’m reclaiming my physical self again. At that same time, I’ve still got a lot to sort out in my head. I know that keeping my body fat in check doesn’t mean that I’m protected from cancer, despite what numerous news reports suggest. It makes me uncomfortable being bombarded with that message, though. According to the December 20, 2018 National Health Statistics Report (Fryer et al. (2018)), the average woman in the U.S. is obese. In the interest of public health, the “lose weight” message is trumpeted constantly. Every time I’m exposed to that, my perfectionism kicks in and I have to fight the urge to clamp down on my fitness and nutrition.

Being an outlier doesn’t gain me much sympathy, and it does comes with its own challenges. In the process of sorting out everything that’s happened to me, I’m working to keep an even keel going forward and not go to extremes. As with everything, moderation.

Invisible Effects: Helplessness

Suffice it to say, simply having cancer can leave you feeling helpless. Ignorance of the cause, uncertainty about the future, fear of treatment effects — that lack of control is frightening. But that’s not the helplessness that I’m writing about here.

In my last post on chemo brain, I alluded to the disorientation that comes from distractedness, brought on by lasting effects of chemotherapy on brain function. Here, I want to drill down and describe the feelings of helplessness that arise. 

In WHY Did I Just Do That?, I wrote about a humorous dream in which I couldn’t understand the reasons for my weird behaviors. But the more sobering side of this is that I often feel that same way during my waking hours. There are things that I’ve done — treating a red light like a stop sign, as mentioned in my previous post — that make absolutely no sense to me and make me feel like I’m not in control of my own behaviors.

To make matters worse, I am not aware that I’m doing anything wrong (or dangerous or illegal!) at the time. When I realize what I’ve done, I’m horrified. Want to feel helpless? Not being able to trust yourself is a pretty good way.

I’ve been told that the main issue is loss of focus. Mindfulness helps immensely in these types of situations, but as anyone who has practiced mindfulness can tell you, you can’t be mindful 100% of the time. In my case, I’m fearful that this distractedness can put others or myself at risk.

This.

Want a few more examples? Some are rather benign, like almost flooding the bathroom because I left the water running in the sink. Or writing an important email and leaving it unsent. Most of us have done something like that at one time or another, likely due to juggling too many tasks at once.

But the things that leave me feeling desperate are the ones that are not easily remedied. Having to learn things over and over again because I’m not retaining information. Having trouble expressing myself and not being able to retrieve words. After working as an editor at one point, this is unbelievably disheartening.

However, one event topped them all: I fell for a (well-designed, admittedly) bank scam where I gave out my Social Security Number despite having taken my work’s cybersecurity training course the previous week, and having received constant reminders from my bank that they will never ask for my SSN over the phone. Besides making me feel unimaginably STUPID, it cost me a good deal of money, time and nerves. 

“Helpless” is not even the best word to describe how I feel. “Hopeless” is a more apt term. “Exposed” and “vulnerable” work too. This begs the question: how much more damage will I do to myself before things start improving? I should be working full-time instead of part-time, given the cost of living in my area. But how can I even think of looking for another job when I’m on such shaky ground? Cancer knocked me down in ways that I never anticipated. Yes, I’m grateful for being alive, but YEESH!

Building new neuronal connections, identifying what aspects of my memory issues are most severe, practicing mindfulness as much as humanly possible — it will take all that, along with a healthy dose of patience, to start seeing improvement. Hope I don’t get distracted and drive off a cliff before then.

I Didn’t Expect THAT: Radiation Tattoos

It’s not the kind of tattoo you’re thinking of.

I’ve written a lot about my chemo experiences for breast cancer, but I also underwent radiation treatment. Compared to chemo, it was a breeze, however, it came with its own surprises. I was preparing myself for potential discomfort and burns, but was caught off-guard when I realized I would get four permanent marks on my body to help align the lasers and make sure that radiation was being delivered where it was needed.

Permanent marks = tattoos. Now, I have nothing against tattoos on other people, though I admit to occasionally thinking, “You realize you’re stuck with that, don’t you?” about a particularly colorful specimen. Sorry, it’s the era I grew up in. I’ve seen absolutely gorgeous tattoos; I just never wanted any myself.

Venus_de_Milo_RAD-TATTOO
Venus de Milo illustrating where three of my four tattoos are (the 4th is hidden by the stub of her arm, but mirrors the visible one on the other side). Not actual size, obviously.

I remember being told about the tattoos and instinctively wanting to protest. It wasn’t about the dots themselves — I keep my dermatologist in business with all the moles that pepper my body. I think it was about not having a say regarding something that was going to be done to me. For me, cancer was about feeling out of control. Being forced to get tattoos was frustrating and completely unexpected. It felt like bait-and-switch, where the focus was on preventing burns and what to do about tender skin, but then ohbytheway, you’re getting tattooed too. It was one more thing to endure.

I know I was blowing this out of proportion. These are just small dots. There are four of them, one on the ribcage below each armpit and two running down the center of my chest. They’re blue, which was a necessity, given my highly mole-y skin. And they’re definitely permanent. I wrestled with the concept but eventually sighed and just accepted it.

rad_tattoo
One of my tattoos, closest to the belly, several inches below the sternum (see Venus). Glasses for reference. Yes, It’s teeny.

Maybe it was the friendships that I developed with the radiation team, maybe it was finishing all my cancer treatments, but my prejudiced view of those tattoos softened over time. Now they meant something to me. Previously, I couldn’t imagine any reason that I would submit to being marked like that. But then I started wishing that the tech had drawn teeny stars or hearts instead of plain dots. And I heard of breast cancer survivors covering mastectomy and implant scars with inked art, or foregoing the reconstruction altogether and allowing their chests to serve as a canvas, making something beautiful out of an emotionally painful situation.

 

 

I’m glad I have my little tattoos.