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Dr. Susan Love's Breast Book, 6th edition, 2015 |
Dr. Susan Love's Breast Book is thick and I certainly haven't read it cover to cover, but I'm working my way through the sections on causes and prevention, chemotherapy, and complementary treatments. The early section on the biology of what causes breast cancer is useful, in my opinion, for getting a laywoman's understanding of the mutation process that causes cancer. I had read similar information already, but the repetition is useful, as are Love's analogies. The author compares DNA to a cooking recipe and the immune system to neighborhood watch, local police, and national guard.
Part of the reason I like the focus on the biological process of how cancer develops is that it isn't simply a on-off switch and the causes are complex and interrelated. It's not like silicosis, which is a type of cancer caused from inhaling silica dust. This is a type of cancer that clay folks know to be concerned about. If we don't keep our studios clean and don't wear masks when mixing clay and glazes from powder, we can inhale tiny silica particles in the clay which irritate our lungs and can eventually irritate them enough to cause the disease. Pretty straightforward, in this situation, to see the risk, see how it leads to the problem, and, in this case, avoid the risk in our daily lives.
Breast cancer hasn't been clearly linked to one single cause like this. Though being a person with breasts certainly makes is much more likely that you will develop breast cancer, a lot of people with breasts don't develop breast cancer. Also, it's significantly harder to avoid having breast tissue than it is to avoid breathing in silica dust.
So, there are a few factors that have been shown, with reliable scientific research, to impact your chances of getting breast cancer. Being a woman makes it more likely (men can get breast cancer because men have a bit of breast tissue). Not having a child, not breastfeeding, or having a child later in life can make it more likely. The density of one's breasts can also make breast cancer more likely.
There are also some genetic risks, though genetically linked breast cancers are pretty rare. Only 5-10% of breast cancers (or is it people with breast cancer? I'm not sure if that 5-10% counts people or individual instances of cancer, as one person could have cancer multiple times and someone with a genetic predisposition might have it more than once) have a genetic cause.
As I am young for cancer (and presumably because I don't have other clear risk factors), I have met with a genetic counselor and will be doing a genetic test. According to the list of 9 items that would make my doctors recommend a genetic test, I meet the criteria 2 or maybe 3 times. Number one on the list is simply "Personal history of breast cancer, diagnosed at or before forty-five" (page 98, Love).
There are also some lifestyle things that can impact one's risk. These are the ones that make me mad. Dr. Love's book doesn't specifically make me mad, but I keep looking for a reason or something I can change to lower my risk going forward and I keep butting up against these top few suggestions. I find these when I'm looking for lifestyle changes I can make under the category of "complementary therapies." First, I should try not to be overweight. Done. Second, I should try to work out. Sigh. I do this already.
I should not drink to excess (I probably have a total of less than three drinks a year). I should not smoke (I don't always see this one listed for breast cancer, but still, it isn't relevant to me). Then the list of suggestions becomes a little more vague as we move on from these. Maybe diet might impact breast cancer, but we're not sure how. Fruits and vegetables are good for you, maybe eat more?
This is the point at which I invariably throw up my hands (or throw down the book I'm reading). Depending on my mood, I'm now mad because I already do all this. I don't drink, don't smoke, I've got a healthy BMI (there are some real problems with BMI as stand-in for health, that I don't need to bring in here, but if you're curious, I've been really enjoying the podcast Maintenance Phase, in which the funny hosts research various health and wellness topics, including BMI and talk about their research). I work out regularly and walk to work regularly. I eat pretty healthy most of the time. According to the damn list, I shouldn't have breast cancer.
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A handy list on page 147 of Love, of things I already did. (I even tried to do #9, "Have a doctor evaluate any breast symptoms or changes that develop" in July, but by then it was already too late.) |
If I'm in a more melancholy mood, I realize that I could work out more than I do. I only "do a workout" maybe 30-50 minutes at a time 3-5 days a week. I could be doing a lot more. One time I took a week off. And I only walk to school most days. Maybe I should be running. Maybe I should move farther away from work so it'll be a longer walk, or run. And my diet isn't 100% healthy. I sometimes eat candy or ice cream or fast food. Do I always eat 5 servings of fruits and vegetables each day? Probably not! What if they aren't the right fruits and vegetables anyway? And what about that mojito I had in 2019?
I believe I am mentally stable enough, most days, to break myself out of the thought spiral above. My husband helps by reminding me that compared to a lot of people I exercise quite a bit and eat pretty healthy. But having cycled through both sets of thoughts on this list of risk factors and lifestyle changes for a few weeks now, I think I've come to a realisation. And that is that I never did enjoy statistics or probability.
If I had understood probability, I might have understood how sometimes the thing with the low statistical odds happens anyway. In the real world, there isn't a committee that looks at your diet and exercise log, measures your BMI and assigns breast cancer only to the folks who didn't do everything on the darn list.
Seriously, probability is stupid and I didn't like it when I was trying to learn it in school and I don't like it now. But I have come to a kind of equilibrium in my feelings about risk and lifestyle factors. I'm becoming calmer about it and I think I can confidently say that I developed breast cancer for no reason. I didn't do something wrong. I didn't deserve it. I didn't screw up and let it happen. It wasn't my fault and, unfortunately, it doesn't appear to be anyone else's fault either. (Which is what my doctors said in the first place, I just wasn't ready to listen.)
Why my Rant isn't Over
My path didn't move in a direct line from good advice and good resources to comfort with the idea that this wasn't something I could have controlled. Instead I've bounced back and forth between different resources as I've tried to navigate which ones are reasonable. Along the way, I've encountered some things that have really frustrated me and made me feel bad (bad, guilty, scared, worried, all that).
The good news is that very few of these frustrations have come from actual people. Aside from a few odd interactions, mostly from random people (as in, not friends and family), people I know have stuck to wishing me well and agreeing that cancer sucks. They've also brought me food and listened and offered to listen and brought/sent cards, and well wishes, and gifts, and at least 3 people have offered Alison a place to stay when we're in Seattle, and even offered to help with groceries or Christmas shopping. Friends with cancer or who have gone through this before have offered invaluable advice and suggestions about all manner of things (so far the vast majority of the advice from everyone has been helpful and all of it has been well-intentioned and makes me feel supported).
The annoying stuff has come mostly from books, podcasts, and online resources, most of which I have encountered while I was trying to find out more about either why I got this or what I could do to help it go away (besides following medical advice). To be fair to my medical professionals, the very first day the woman at Ohana told me to stay off of the internet for questions about cancer (I listened to that advice a medium amount).
Food, maybe
When looking for books about breast cancer, its hard to know what is reliable and what isn't. In fact,
SCCA gave me a list of books that I think includes some duds. For example, I started reading Dr. Kristi Funk's book,
Breasts: The Owner's Manual and it seemed reasonable for a while. It called out some myths about cancer causes, but I stopped reading when I got to the section about how diet impacts breast cancer "a lot." This contradicts what I got from Dr. Love's book (as I understand it, she says that we're not sure what parts of diet matter). Dr. Funk goes on to talk about prostate cancer and diet, tells us that coffee or caffeine doesn't cause cancer but also suggests that it is bad for cancer. Then she tells us dairy isn't a breast cancer cause but that you shouldn't drink it because of saturated fat. Then she goes on to talk backwards and fowards about meat. I have no idea what her point is or if she is recommending avoiding meat.
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Funk's writing style is chatty and includues a lot of questions she only kind of answers, but I couldn't follow it. Perhaps the book is ok, but it seems to focus a lot on what to eat or not eat and she hasn't convinced me that she knows. Her diet advice might be ok, but her writing style and the ways in which this advice contradicts what I hear from my doctors and what I've read in the two reliable books doesn't give me upmost confidence in her book or the primacy of diet in controlling cancer.
I do think that I will keep exploring diet in these books that I haven't finished, and, of course, we can always make our diets better, I'm sure, but the reliable information seems to be conflicting at best and I'm not convinced I need to fret about what I've already eaten or what I can tolerate during chemo. Bottom line, it does not seem clear that my fairly healthy omnivorious diet caused my cancer. During chemo, it seems clear that keeping myself hydrated and eating something is most important. Trying to change my diet isn't recommended right now, and I wouldn't know what to change it to anyway.
The Most Toxic Sludge
While I was looking for resources, I came across some podcasts/podcast episodes that focus on breast cancer. I've listened to a few individual episodes about chemo supplies (Breast Cancer is Boring), Meal Train (Breast Cancer and the Unknown) and Fewer Breast Cancer Cases (The Exam Room). These have so far been mildly helpful and the Breast Cancer is Boring podcast is fun.
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I haven't listened to a lot yet, but so far I am enjoying this one. |
Then there's this podcast, The Model Health Show by Shawn Stevenson. This podcast made me sooo angry. Honestly, I only got about halfway through it because I kept stopping the podcast to angrily fact-check the host. The episode is The Truth About Breast Cancer and yes, I now realize that the click-bait title should have warned me off, but I was in a fragile state, okay?
In the first 23 minutes of this one single episode, this guy tells us that antiperspirant and bras somehow block the lymphatic system from working, causing aluminum to back up through the lymph system into the breast where it causes tumors. He explains that because women shave, the aluminum in the antiperspirant goes into our system, whereas men who don't shave their armpits don't get breast cancer. He says that cancer is a wake-call for us to live differently and suggests that if your bra leaves a mark on your skin at the end of the day, that should have woke you up, too. He vaguely blames lotions that women use and wants Victoria Secret to change their products so that women won't get cancer. He blames sugar for breast cancer and tells us that biopsies cause metastasis or spread of the cancer. And finally, he explains that "groundbreaking" research tell us that more people die from chemotherapy than from leaving the breast cancer untreated.
This dude is a charlatan and is making the world less safe. Seriously! I want to know how this guy is allowed to spread his garbage without getting called on it? Because once I started to feel skeptical, I tried to look him up; I tried to find critical reviews. There was almost nothing!
Biopsy Spread
As I said, I did look up a bunch of these claims. There is a small chance of a biopsy spreading cancer, so it's possible, but accoring to this
Cancer.net article, it isn't something we should be overly worried about and the idea that we should was spread via a guy who lost his medical license. Without that information, it is still hard to understand how a doctor would confirm that you have cancer without checking and biopsies seem like a pretty standard method for doing that. If you couldn't biopsy, it seems like you'd just have to do major surgery on anything that might be cancer. Before my biopsy, I looked up the numbers and found that 4/5 biopsies do not result in cancer. Before my diagnosis I liked that my odds were 80% for it being ok. Stupid probability.
Antiperspirant and Bras
I didn't look up the antipersirant and/or bras block your lymph node theory because I had already encountered it. It was also debunked in Dr. Funk's book. Your body has a lot of lymph nodes in a lot of places. They drain stuff in association with your blood flow. I don't totally understand all of it, but you can't just shut off your body's drainage and blood flow by wearing a tight bra. I mean, your bra would have to be astoundingly tight. You would know that something was wrong. I'm thinking you might crack a rib.
The lymph nodes aren't the same as your sweat glands and even if they were, it seems reasonable to assume they don't collect stuff from the skin under your arm and drain it into your breast. That would be an unsafe and frankly bizarre way for your body to operate. What would happen in you fell in the mud? Would you end up with mud cancers in your breasts? Here's
an article from the American Cancer Society debunking some of these myths around deodorant and antiperspirant. This article also talks about aluminum and parabens.
Sugar
Sugar is another of his bugaboos. The story is a little more complicated here, and frankly boring. See
this article from Cancer Research UK to read more boring information about sugar and cancer. My summary: cancer cells use sugars, so do other cells. Being overweight or obese is linked to higher rates of cancer and lots of sugar can help you gain weight. Severely restricting sugar from your diet can be harmful during chemo because severely restricting your diet can be harmful. See? It's boring because we already know all of this. Cutting out sugar won't magically cure cancer, but don't eat too much for a variety of reasons. This boring, complicated answer jibes with the unclear information about diet in general. Try to eat healthy, but we're not sure exactly what that means or how much it matters anyway.
Treatment Kills
The last thing this guy talked about was really surprising, which is probably a good metric to use to eliminate advice out of hand. If it is really shocking and contradicts everything you've been told, maybe it isn't true. He said that chemo is one of the most harmful causes of cancer. He goes on to refer to "groundbreaking research out of UC Berkeley, led by Dr. Hardin Jones" into Tamoxifen. He quotes Jones as saying "my studies have proved conclusively that untreated cancer victims actually live up to four times longer than treated individuals," and explains that people who refuse treatment live an average of 12.5 years compared to those who opt for treatment (chemo and surgery) and only live an average of 3 years. I quoted him here because it is so much!
I tried to look up this "ground breaking" research and this claim. Again, I am not a professional knower of medical research techniques, so I may just be wrong, but I figured this person and the claim shouldn't be too hard to track down. The link from the podcast page sends us to a bizarre article on
Rethinking Cancer that appears to be posted but not written in 2020 and the only author name seems to suggest it was written by Jones, when it clearly wasn't. (I'm not including the link because I don't want to encourage connections to junk websites, but is easy enough to find via the podcast name if you want to look.) As far as I can tell, this Dr. Hardin Jones
died in 1978. (I found a younger Hardin Jones, but he does not appear to be a doctor or researcher specializing in cancer.) If this is true, its hard to understanding how 43+ year old research is ground-breaking!
The other relevant website I found was
AnonHQ, with an "article" titled
Berkeley Doctor Claims People Die from Chemotherapy, Not Cancer (again, I'm not linking to junk, but it's easy to find if you want to). This piece of media is incredible, really. The text below the video says that in the video we hear from Dr. Hardin B. Jones. But the doctor in the video is clearly identified as someone else. But wait, it gets better! Two paragraphs later is an alleged quote from Jones with a hyperlink to his "
study." When you click on the study, you get to a pretty random website--one of those text only pages with an unclear title/date/ownership. On the other hand, this text-only page includes author name and list of references, which is more than I can say about
AnonHQ and
Rethinking Cancer. The thing about this link, though, is that it contradicts the text at
AnonHQ that it has been linked to (seemingly to provide support). This text only article puts Jones in context explaining that this presentation at which he derided ccancer treatment was in 1956. You might not guess it, but a bit has changed in the past 65 years!
Condescending Wake-up Call
On his podcast, this host guy is having a fake sort of dialogue with a female cohost (I didn't find her name after minimal searching). Her job is to act shocked or agree with whatever he says. I think she's meant as a proxy for what his audience is supposed to be thinking, but I kept thinking how condescending the dialogue felt. He's clearly selling something (diet books, podcast, etc), and this is an infomercial, but it just makes me mad that it's sold to people who are already upset and off-balance because of their recent diagnosis. And what he's selling is snake oil. None of this stuff is the cause of the cancer, taking off your bra and eschewing your deodorant isn't going to help, and refusing treatment based on medical advice from the 50s is actually going to hurt people!
This guy says that a cancer diagnosis should be a wake-up call to change one's life. But once we remove the garbage from this list of advice, I'm left with nothing. If I don't buy into his false and dangerous ideas, I'm back to square one. The wake up call is to...um...do exactly what I was doing already, but get more mammograms? I got cancer for no reason and that simply sucks, but it this guy doesn't have a solution for me or a product for me to buy to make it all better.
More Subtle Toxic Sludge
Besides the crap so efficiently collected on this guy's podcast, there are two more kinds of things that have really irked me in looking for causes or solutions. One is explicitly identified as a cause, the other is more insidiously wrapped into wellness/fitness culture.
Stress
This one I've encountered a couple of times, but I'm not sure of exactly where. I do know that I encountered this in a support group thing that I've been using. The app is
Breast Cancer Healthline and it's bascially a self-contained Facebook for breast cancer folks. The content is mostly semi-organized discussion groups where people with breast cancer can talk to each other about symptoms, treatment, living with cancer, etc. So far it has been mildly useful, if a little depressing, and non-toxic.
The other day a woman asked a question about whether stress had caused her cancer. The idea that stress causes cancer upsets me, though not at much as most of the stuff identified above. According to Kneece, in my
Breast Cancer Treatment Handbook, "The average breast cancer has been in the body for 8-10 years when it is discovered."
Other sources give different ranges
from 2-5 or
3-9 years. As far as I can tell, the rate of growth varies too much between and within cancers to have really accurate information on this.
But the issue I see is that breast cancer (maybe especially when the lump is found by the breast owner themselves) isn't likely to have developed just recently. If your original cancer mutation happened because of stress, how long do you go back to find that stress-based cause? If I had a stressful life event 5 years ago and things have been fine lately, does that mean stress is to blame for starting my cancer? What if things were peachy 5 years ago but the last months have been really tough? Does that mean my original mutation was random, but the stress made the cancer grow? Pinpointing the start of the stress that caused the cancer feels a bit like reading a horoscope. I'm sure that all of us can find at least one stressful event within the last 10 years of our lives that we can blame for either the original mutation or the continuing growth of the cancer.
The next part is defining the stress event, which doesn't seem to be clear in what I've read. When we blame stress, are we blaming a stressful life event, like an accident or losing a loved one? Can it be the regular stress of grading during finals week or does it have to be acute, long-term, or unusual? Or are we just talking about how stress is handled? Can two people with the same life event perceive it as stressful or not that stressful? Can you handle your stress with yoga and mediation or does it have to be eliminated entirely? We can't answer these questions because the folks blaming stress don't seem to know what they mean. It also isn't clear to me that studies have been done to check that we're blaming the right thing.
The corollary, and the reason I see stress-as-cancer-cause as an insidious and toxic scapegoat is that blaming stress (especially without a clear definition of what that means) seems a lot like blaming the person with cancer. If you have cancer, this implies, then you didn't manage your stress well sometime in the last decade and thus are responsible for your own cancer. And you know we're all going to fail that test.
BreastCancer.org agrees with me that stress doesn't cause breast cancer.
Wellness
This last one may just be me getting cranky during all this searching for a cause, but a week or two ago a friend who teaches fitness classes posted a meme along the lines of the one below. It said something to the effect of "If you do not make tiem for your wellness, you will be forced to make time for your illness."
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I found this unattributed quote image at Julie Genney Coaching, where, to be fair, she contextualizes it in relationship to healing from an injury.
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Can you see why this makes me mad? I've been making time for my wellness by exercising regularly, eating healthy, doing yoga, lifting weights, walking, running, getting regular checkups, taking my vitamins, etc for most of my adult life. I have made the time and you know what? You know what? I am now making time for my dang illness. And there was nothing I could have done about it.
I know that this meme is supposed to be motivation to go to the gym or whatever. And if it works for folks, I guess that's fine, but seeing it this month just made me cranky. It implies that folks with illness didn't take the steps to prevent it. I did! It looks like a guarantee that taking these steps before will innoculate me against getting an illness later. It didn't!
I did not do anything that should have led to me getting breast cancer. And you know what? If you're reading this because you have breast cancer, your probably didn't either. Cancer came and it got us for no clear reason other than that we live in the world and the world has stuff in it that causes mutuations and some of those mutations turn into cancer.
Picture an idyllic time before deodorant and bras and traffic and McDonald's and soda and cigarettes and chemo and biopsies and office jobs and airplane and cell phones and whatever other damn thing we're blaming for cancer today. Are you picturing that time? Let's go way back, say 4000 years ago, before all that modern crap existed. At this time,
the ancient Egyptians had breast cancer. The
ancient Greeks had breast cancer. A
few hundred years ago people had wacky ideas about what caused breast cancer (kinda like now). Breast cancer is a thing that happens and we don't understand exactly why.
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An exellent book on the history of cancer. I read it back in the day and then re-read it this month and enjoyed it more as it meant more this time around.
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One more thing about wellness and stress and cancer myths. I've had a lot of people tell me that it is really important to maintain a positive attitude. These people mean well and they usually accompany this advice with an offer of help or with actual help. I'm a pretty baseline-cheerful person, so I mostly take this suggestion to have a positive attitude as it is meant: they care, they aren't sure what to do, and they want to assure me that I'll be ok. (I hope I'll be ok, I mostly think I will be, but as
Tig Notaro says, "It might not be ok").