I’ve said it over and over — language matters.
Language matters a great deal.
A hot button issue for many in the cancer community, for a variety of reasons, is the terminology around awareness and prevention. It’s such a hot button for me, I just shuddered as I typed those words and I’ve heard others talk about their visceral reactions to these and other emotionally charged words in the breast cancer space. I do realize that many have their own personal perspectives (as I have mine); at the same time, there are some phrases that have a more universal reaction.
For a long time, many breast cancer organizations (governmental and otherwise) have focused on catching breast cancer when it’s newly active in the breast. That has lead to some of the slogans that are well known such as “Early Detection Saves Lives; or “Feel your Lumps, Save your Bumps.” Catchy sayings do stick with people like “Save the Tatas” or “Save Second Base” and yet, all of this focus on early detection and/or “preventing” cancer actually hasn’t resulted in lower deaths from breast cancer, this focus has ensured that women feel responsible for their cancer.
Here’s how I look at it.
There is no way to prevent cancer. We all have cancer cells in our bodies and, at some point, in some people, the switch to proliferate without brakes is turned on. Once that switch is flipped, that’s it biologically, cancer happens and often spreads. Once that switch is flipped, the horse has left the barn and all everyone can do is simply deal with what comes next, which is heightened surveillance and treatment.
What flips the switch? NO ONE KNOWS.
That is important, so I’m going to say it again — NO ONE KNOWS HOW THE SWITCH IS TURNED ON. We can guess at genetics or other “risk” factors, which I would submit are uncovered far more with correlation than causation, but the basic understanding of what is responsible for causing cancer is a mystery.
So when there is information about preventing cancer or campaigns talking about the consistent themes in cancer patients like having taken birth control or carrying extra weight or diet choices or exercise habits, all that does is create guilt in the people with cancer and pressure on those without cancer. The themes in our world and cultures have given us this list of risk factors — for instance, access to birth control is so prevalent now, most people with breasts have taken it during their lifetimes. Birth control doesn’t cause cancer and not taking birth control does not prevent cancer, but breast cancer patients are often made to feel bad about this choice.
Who does it help to make patients feel responsible for their disease?
Generally, I would submit that it helps no one to put the blame on the patient. Cynically, I think putting the blame on the patient relieves some governmental officials of pressure on them to fund research or to address public health issues when examining regulations that affect other things like the environment or big business. If we cause our own cancer, then no one else is responsible for making our food safer or reduce carcinogens in the environment.
I’m not suggesting that looking broadly at all the potential risk factors in cancer is easy, just that the last person anyone should be blaming is the patient. We are all at the mercy of many things that are out of our control and until there is definitive evidence that certain behavior or others cause or prevent cancer, no one should be inferring that this is possible.
It is NOT possible to prevent cancer; it IS possible to reduce one’s risk for cancer and to increase surveillance on those who have an increased risk for developing cancer.
This, I would submit, is where the focus should be. Let’s not point fingers at anyone until we know for sure there is a causative link. For now, when we don’t know, if we encourage everyone to work together to reduce the risk for cancer for the general population, we not only have a chance of success, we will also limit the finger pointing and blaming that is inflicted on a patient already dealing with the worst crisis they’ve ever faced.
People with cancer need to have their lives made easier and smoother and to be able to look forward towards better quality of life rather than backwards towards what cannot be changed or affected. Isn’t that what everyone needs, regardless of a serious health diagnosis? Let’s remember to keep the humanity in our efforts and not blame the patients for their predicament.
No Half Measures 
Spot on Abigail. I have felt the guilt many times and it just make me sad. I will keep your words in mind when the dark cloud is sneaking upon me.
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I experience those dark clouds too and I don’t think there is any way to fully prevent looking backwards to see what could have been done. At the same time, I see my quality of life only getting better as I focus on what’s in front of me now. Love and hugs to you. ❤️
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Makes sense, and I can see how it would sound blame-y. The concept of primary/secondary/tertiary disease prevention seems to be pretty well established in public health in relation to many types of disease, with primary being lowering risk factors for developing disease, secondary being early detection and intervention, and tertiary being prevention of progression.
It sounds like with breast cancer there’s a heavy emphasis on secondary prevention, perhaps because there isn’t enough that’s known to come up with effective primary prevention strategies.
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This is interesting and I’ve never heard of a break down in areas of “prevention,” although my point is still valid for all of the levels you mention. There is no way to prevent cancer in any way, period.
Do you have an article explaining this further?
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Click to access picture_of_america_prevention.pdf
https://phprimer.afmc.ca/en/part-i/chapter-4/
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This is fascinating. Thank you for sharing.
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🙂
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This is a very important post. I have read a million times that we all have cancer cells in our body and nobody knows what flips the switch. Blaming the person who has a cancer diagnosis (either subtly or less so subtly) is ignorant cruel.
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So true!! I think that tendency is rooted in fear. The person who doesn’t have cancer is desperately looking for a reason or way they won’t be in the same boat. We can all only do the best we can with the information we have at the time.
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Yes, you are absolutely right. Most of the time it is rooted in fear, and it helps us cope with the powerlessness we feel. Thank you for all the good you are doing with your blog.
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Agreed. ❤️
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Great clarification and reminders!
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❤️
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I feel like this happens much more with Breast Cancer in which most of the people who wind up with cancer are women versus prostate cancer. Do you think gender is part of the issue?
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Such an interesting question!! Since I know this sort of thing is an issue with lung cancer and the smoking questions, I suspect it’s not as much of a gender thing; at the same time, I think the nature of the cancer is probably an issue all itself. I will definitely ponder this. Thank you for reading and your thoughtful comment!
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Thank you for your attention to this. We don’t die from diet, underwire bra, high power lines, a bad attitude, lack of screening, lack of awareness. We die because we are MORTAL.
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YES!! And we can’t do anything to avoid our genes. Love and hugs to you … how are you recovering from surgery?
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Thinking more about this I think by finding ways to blame the person with cancer for their cancer then people can say to themselves. Well it’s a shame she got cancer but since she did/has/or is XYZ then that’s why it happened to her and won’t happen to me–it’s an illusion of control that is maintained by the patient being at fault. Much the same way our society blames poverty on the person as a moral failing and a wealthy person is seen as virtuous.
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I agree that this is definitely an underlying issue/feeling. It’s about fear imho.
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Reblogged this on By the Mighty Mumford and commented:
THE SWITCH IS ON—LET’S DEAL WITH IT AS BEST WE CAN!
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Thank you for sharing!
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ready and waiting, my friend!!!!!
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This is so true and thank you for your well written post! I found a local support group a few months ago when I was finally ready to talk about MBC. The first meeting I attended, the peer moderator shared she had gone to an all vegan plant based diet and her cancer was stable. She did not state the relationship but it was implied. My mind went ballistic since I know diet shaming is harmful and is there is no diet that will cure or stabilize cancer. My response to the group was that I eat chocolate cake for breakfast. I got a laugh out of that, it lightened the mood, and hope it helped others in the group. It took some time for me to try support groups again, and I can’t tell you how much it enjoyed hearing from you and your dad on Monday night. You two have a gift and great synergy. I’d love to join future meetings!
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I’m so glad you were able to come!! Yes, there is so much patient shaming in general about way too many things. I do believe we can help our body and it’s functions by food and other things like exercise but for anyone to say or insinuate that those activities cured or affected cancer is just not something anyone can prove. I struggle so much with all of the hype and ways people make money off of our suffering. Chocolate cake for breakfast sounds divine and I’d definitely do that if I didn’t have to stay away from sugar because of piqray! Hope to see you next time! ❤️
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You and I have always agreed – in fact the newest language on breast cancer being the #1 diagnosed cancer and the #1 killer of women DOES indeed blame the patient. In fact not having kids and obesity can both be blamed on the victim. So what about nutrition counseling what do we do have the Handmaids Tale come to life to prevent some breast cancer? Misogyny. Such a beautiful word on the page. But it ain’t pink and who married fat women and dare have children with them? It’s enraging and still we sit waiting to be released from the prisons of our houses for the last entire year and it’s certainly not our faults we have faulty immune systems to let the germs right in and at a 35% mortality rate having survived this long I don’t want to lose my “war” to Covid. War. My ass.
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You have SUCH a way with words, my friend. ❤️
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This is a fantastic post, Abigail, and I agree wholeheartedly with your point. I would love to put it on my website as a guest blog post. How do I gain permission to do this?
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Send me an email or direct message and we can talk!
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