Okay, maybe this post’s title is a lie, since I keep bringing this topic up. But I admit that I need to stop whining about getting breast cancer when I didn’t have risk factors, so I’m officially giving myself one last time to vent. And then it’s time to let it go.
First, what is a risk factor? The NIH National Cancer Institute dictionary defines a risk factor as “something that increases the chance of developing a disease”. However, that does not mean that it’s necessarily a cause of that disease. And that’s where the potential confusion (and in my case, irritation) arises.
While breast cancer has a number of risk factors, none of them are 100%-for-sure causal in nature. Even having the BRCA gene does not guarantee that you’ll get breast cancer, although your risk is quite high.
So why does this matter? Turn this around and look at someone with breast cancer. Based on risk factors, you’d expect them to be overweight, sedentary, a smoker, a drinker, an unhealthy eater…and you might be completely wrong. Ascribing unhealthy behaviors to an individual just because they are a cancer patient is potentially stigmatizing (it suggests that they are responsible for bringing on their disease) and ignores the fact that we still don’t know why cancer develops. And what of all those making poor health choices who do not get cancer?
Engaging in the opposite behaviors — being a lean, active, non-smoker, non-drinker with a plant-based diet — likewise is not guaranteed to protect you from breast cancer. And yet, that’s exactly the feeling you get from reading all the recommendations, which leads to a potentially dangerous false sense of security.
Certainly, no matter what disease you have, the more healthy behaviors you engage in, the better your outcome. However, even being a paragon of healthy living is not the “get out of cancer jail free” card that we are led to believe it is. So get yourself checked out and don’t take your health for granted!
What brought all of this up? At a recent gathering, I had an interesting conversation with another former cancer patient who also happens to be a medical psychologist. She felt as frustrated as I did about the way cancer risk factors are presented, so I felt a vindication of sorts. We both agreed that it is critical to highlight the difference between cancer risk factors and causes. And of course, no matter what your perceived cancer risk, to live as healthfully as possible.
Now that I’ve gotten that off my chest, I will do my best to shut up and move on.
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.
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.
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.
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.
While my previous post had focused on appearance, how I looked was a relatively small part of getting back to where I’d been physically. Much more important was the hit my strength and endurance levels took, and those don’t really show up in the photos I posted. While there’s not a huge change in muscle size, my strength did decrease significantly, not surprising given that I was going through cancer treatment. At the “height” of each chemo infusion, I had trouble walking, sometimes even lifting my head from the pillow. Movements required a lot of effort.
All that rest time affected my physical ability. I’d been told not to row (Concept2 erg) for four weeks after the lumpectomy on my left breast. That was tough because rowing is a form of meditation for me, the quintessential mindful movement — it was stress management that I desperately needed. I wanted to follow the rules so I stayed off the erg, but incorporated light weights into my “weenie” workouts. That helped, but I felt frustrated and weak.
Then, after those four weeks were almost over, I had my chemo port implanted on the right side of my chest wall, and again was told not to row for 3-4 weeks. Well, a week after port placement, I had my first infusion. ARGH! Sooooo, I wasn’t able to get back to rowing until I’d recovered from my first chemo.
My strength continued to increase after each of the first three infusions, which was gratifying. I’d gotten to about 2/3 of my pre-surgery strength training weight load. But after the 4th infusion, the fatigue started to catch up with me and I had to slow down. I was tired! To make matters worse, my bloodwork before the 5th infusion revealed an increase in the levels of two liver enzymes, ALT and AST. Chemo is hard on the liver, which works overtime to clear out the drugs from your system. If those numbers continued to go up, my 6th infusion would be delayed.
Now, you might think: what’s the big deal, waiting a week or two longer for the last infusion? Psychologically that would have been devastating. For me, getting through chemo was more than enduring its physical effects; the mental component was huge because of the stark contrast between my level of fitness previously compared to where cancer had knocked me down to. The dates of each infusion were seared into my mind, and I really needed chemo to be over.
My solution was to implement every means imaginable for decreasing liver enzyme levels. That included foregoing heavy lifting, according to my research. Anything, to finish on time. For the weeks before my last chemo, I was a green-tea-guzzling, dark-leafy-green-devouring, turmeric-supplement-popping, hyper-hydrated couch potato. Thankfully, my numbers went down and I finished chemo as scheduled.
The final infusion required the longest recovery. Once I got over the worst of the side effects, I could still only row 500 meters at a time at a harder pace, and my weight load and repetitions had dropped dramatically when strength training. While I was done with the hard chemo, I still had Herceptin infusions (and still had the port implanted, which got in the way) and those affected my heart, so I got tired more quickly. Not chemo-tired, but tired enough. I focused first on improving muscle endurance (lighter weights, higher reps) and then gradually increased the weight and dropped the reps to build muscle back.
There was a fire under my butt to get back to my version of “normal”. Ultimately, regaining strength was the easy part. The hard part was getting back to where I had been mentally, and even now I’m not sure I’m there yet. But who knows if I was in as good a state pre-diagnosis as I think I was?
My focus now is to train as hard as I can, stay as active as possible and not succumb to the weight gain that seems to afflict the average middle-ager. I guess I’m trying to find a “recipe” that will keep the cancer from coming back. It probably doesn’t exist, but seeking it is one way for me to maintain a semblance of control over something that is ultimately uncontrollable.
I received an unexpected but incredibly satisfying compliment today. It was from a worker at Trader Joe’s who made a flattering comment about my arms. A little background here: I like to work out, and even obtained a personal trainer certification when I was a stay-at-home-mom. While I’ve never trained people as a profession, I have maintained my certification over the years — in addition to a vigorous training schedule. I’ve been told that this is unusual for “a woman of my age”.
When I received my cancer diagnosis, I was shocked largely because in my mind my lifestyle didn’t seem to fit the profile of someone at high risk. One of my greatest fears as far as cancer was concerned was that it would affect my ability to train regularly. While so many people engage in eye-rolling when it comes to exercise — it’s popular to equate exercise with misery — having to take time off from working out was one of the most horrible outcomes I could imagine. My version of hell involves a sedentary existence. I train hard to enjoy my life, to be able to move and lift and not feel pain. I work out to live and that energizes me like nothing else. And anything that jeopardizes that is a death sentence to me.
Okay, maybe a little dramatic? But you get my point. I.Love.Exercise.
Today’s compliment was particularly poignant. During my 2017 doctor’s appointment to check out that suspicious lump in my breast, the doctor’s assistant commented that she wished she had my arms. I remembered that as I went through diagnostic tests and oncology visits and surgery. I followed my surgeon’s orders regarding not lifting heavy things (well, mostly, because “heavy” is negotiable), but as soon as that time limit passed, I was off and running. Exercise meant normality, and I craved feeling normal, as in “not sickly and dying from cancer”. There was mention of this nasty impediment to my life called lymphedema. I didn’t really think about it much until I was discussing lifting weights with my oncologist, who said, “Exactly HOW MUCH weight are we talking about here?” and sent me to the lymphedema specialists so that I wouldn’t go full-Schwartzenegger without knowing whether I was risking having my arm blow up. (It hasn’t so far.)
But my point: the compliment I received today made me feel like I’d come full circle. While, yeah, fear of death from cancer is a biggie, drastic changes to one’s lifestyle are also anxiety-provoking.
I need to get this off my chest (no pun intended), because it drove me absolutely nutso for a long time. As far as I was concerned, there was no reason whatsoever for me to get breast cancer, and a gazillion reasons for me not to. I had fantasies of taking the breast self-exam instructional card that hangs in our shower and running it through the shredder, flipping it off as it disappeared into the steely maw. That’s because on the backside of the card were guidelines to reduce one’s risk of getting breast cancer, and it was infuriating how anemic the suggestions were, as in, they were setting the bar pretty low: “maintain a healthy weight” (been doing that for a long time), “add exercise into your routine”, (are you kidding me? Strength training, rowing, the whole nine yards!), “limit your alcohol intake” (WHAT? I don’t even freakin’ drink!!!). Every time I looked at that card, I fumed. I had gone to great lengths to follow health rules to a T, always erred on the side of caution to the point of being anal about it. When my doc felt the breast lump that I pointed out to her–the one that I’d felt for a good six months but had not gotten checked out because I had no risk factors and I was always fretting about health stuff that turned out to be nothing and I didn’t want to waste the co-pay and the lump was probably going to go away on its own soon, blah blah blah–I was shaken by both her obvious concern and the warning not to put off getting the diagnostic mammogram done.
Obviously, things did not turn out as I’d hoped. Ergo, this blog…
Following all these guidelines touted to reduce your risk of breast cancer, and then being the one among all my relatives to get it was intensely frustrating. I was the health nut, the vegetarian, the exerciser, habits for which I’d gotten my share of ribbing. I spent a lot of time angry about this, searching for answers why. Maybe there was something I had missed? Was it the plastic straws? Contaminated toothpaste? Radiation from outer space?
Then there was the emotional fall-out, an effect of my perfectionist tendencies. I felt shame, as if I were being judged and people would think that I must not have been “following the rules”. Were they gloating at me? Other women who were not paragons of healthy living didn’t have cancer. But I did? I felt the need to explain myself, as if I risked getting kicked out of some “healthy persons’ club”. There is a popular expectation that the only time people my age exert themselves is when they’re chased by their neighbor’s pitbull. Or running down a Black Friday special. But to actively work at maintaining a healthy existence for the sake of maintaining a healthy existence and presumably a healthy future? Not the typical 50-something. I prided myself on being different and was free of health problems for years, but getting smacked down by cancer…that’s a pretty big one. So was all the effort and exercise and veggie consumption worth it?
What helped calm my anger was looking at my situation this way: Would I not have gotten breast cancer if I ate meat? Or was overweight? Would I have been spared if I drank alcohol or smoked? Or led a sedentary existence?
While following all the rules and recommendations didn’t prevent my cancer, I can unequivocally say that it accelerated my recovery. And I do not for a second regret the effort that went into that focused mindset. Yes, I still wanted to feed the breast self-exam card to the shredder. Many times. But that’s because I forgot that statistics are great for defining populations, but ultimately they don’t matter when it comes to the individual. When you have cancer, your chance of having cancer is 100%. I wanted answers, but so does every cancer researcher out there. As my surgeon reminded me, “If we knew why, we could cure it.” And I’d be up for a Nobel prize.
So, I don’t know why. Of course, since I’ve mulled this over and over, I’ve got a load of theories, some more convincing than others. It’s part of my nature to want to know the why so that I can feel a sense of control over what is a very frightening disease. But I don’t have that. I do, however, have a determined nature and am happy to eat plant-based foods and find pleasure in exercise, and for the time being I will be content in that.