Another One With Cancer…Gone

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Congratulations Academy for being smart enough to include Adam MCA Yauch in the In Memoriam section. He wasn’t just some rapper. He was a film director and founded a great independent film distribution company, Oscilloscope. Another champion of indie film gone.

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A Necessary Repeat

I wrote this several weeks ago for my other blog on Tumblr, which skews a bit younger. It covers a topic I’ve covered here on this blog, but it seems to need repeating. I was angry after seeing one too many pictures of a certain food with the caption “prevents cancer” and suggestions of try this (magic spice/herb). So, excuse the ranting nature of it and all expletives.

Stop Looking for the Magic Bullet

I’ve seen a few posts lately touting vegan diets or a certain food or drink, with the words “prevents cancer”. I know everyone wants “hope”, and wants to do something proactive to prevent this disaster from happening (again). Here comes the cancer curmudgeon to put a pin in the hope balloon, to piss on the hope parade.

The appropriate phrase is “lowers risk of developing cancer”. If some food or drink actually “prevented” cancer, we’d all be ingesting it, because only a moron would want to have cancer—and I mean that, if you’ve ever said, “I wish I had cancer to meet (random celebrity), to be thinner”, you’re a moron.

Magazines, internet articles, etc. flash the words “prevents cancer” to take advantage of our desperation to do nearly anything to not go through it (again), and people buy their product, go to their site. I’ve nearly gone crazy in the past two years seeing those words thrown around on countless magazines as I wait in the check-out line at the grocery store. If anyone actually knew the numerous causes of cancer, there would be cures (there can be no one cure, the disease is far too complex, even in breast cancer alone, never mind all of the cancers). I know of too many stories where the runner, the vegan, or the nutrition freak, got cancer. Hey I’ve eaten a shitload of oatmeal, still got cancer. I don’t smoke, still got cancer. I could go on all day. One of the people who guided me as I went through treatment was the healthiest guy I know: runner, strict nutritional diet, hell, my friend, his wife, is a nutritionist! Guess what—he got lymphoma AND non-Hodgkin’s lymphoma at the same time. There are too many anecdotes like this. Sometimes bad things like cancer happen to people who are most unlikely to get it. If cancer had a motto, it would be “shit happens.”

This brings me to my larger point—phrases like “prevents cancer” feeds right into that “blame the cancer patient” line of thinking. Too many times those without cancer ask dumbass questions like “did you smoke”, “did you exercise regularly”, or “were you overweight”. The biggest risks for getting breast cancer are being a woman and aging—well, I don’t wanna be a boy and when anyone finds the antidote to aging, please tell me. One preventative method suggested on breast cancer websites is giving birth and breast feeding. I never had kids because I’d be a terrible mother. (And the having kids thing would not apply to me anyway, because I was EP negative, my cancer had nothing to do with estrogen, see what I mean about it being a complex disease?) So I deserve to get breast cancer, to possibly die because I made the RIGHT decision for me? Fuck no. Do smokers or former smokers deserve lung cancer, to die? If you think “yes”, then you are an asshole.

I’ve fallen victim to this line of thinking too, yep, I’m a giant hypocrite and I admit it. I cut up tomatoes real fine in the salads I eat constantly now, even though I prefer lightly cooked veggies, and I hate tomatoes, but I eat this because of the alleged cancer fighting properties. I only buy make-up and beauty products with lower amounts of carcinogens and rarely use nail polish, which I really miss. For the first time in at least 20 years, my hair is its natural color, because of the carcinogens in artificial hair color. Hey, here’s a wacky idea: how about corporations stop putting this shit in products? How about NOT putting cancer causing chemicals into animals we eat, and making the meat affordable to all?

There is nothing wrong with taking actions like eating better to improve health, yes, even to lower risk of cancer. I respect those who’ve made the commitment to do so. I respect those who only post positive things in relation to cancer, who embrace the pink and/or Komen culture. It just is not my way of looking at the world, and I hope that this does not tarnish how you read this rant. I’ve said it before and I repeat: I am grateful for all the drugs and care (some the direct result of pink dollars) that have made me NED (no evidence of disease). But being grateful does not mean I should stop asking for more, for better, in the search for treatment and prevention of ALL cancer. I hope I never lose the will to ask this.

In the fight against cancer (if we must use this terminology, oh how I hate this language of cancer, like those “who lose the battle to cancer” just were bad fighters, or losers), science needs to develop better weapons, corporations need to stop poisoning products for profit. Those are the bigger, more effective ways to fight cancer, instead of putting the onus on the individual. Don’t hand me a damn peashooter, I want a fucking nuclear missile.

It’s So Simple

Insanity: doing the same thing over and over again and expecting different results. –Albert Einstein

So all these researchers that study links between obesity/alcohol/exercise and cancer over and over and over are one of two things:

Option 1: If they expect different results, according to Einstein, they are insane.

Option 2: If they expect the same results, they are wasting time and money.

Either way, they need to stop or lose their jobs and funding. Make way for researchers with some original ideas!

The 2020 Deadline Debate

I finally read the editorial in Nature magazine called Misguided Cancer Goal, and listened to the audio of Fran Visco’s rebuttal.

I admit I understand the writer’s general point that the public trust must not be risked, and I especially understand his comment about discovery not heeding deadlines. I think that latter point I understood anyway, and in some ways I do not expect complete eradication of breast cancer even within my lifetime. So while I agree that scientific discoveries cannot be forced, it is the small details of this editorial, and some of the comments, that raised my ire.

The first thing that bugs me is the challenge that NBCC’s blueprint does not have scientific information, and the explanation of how and why cancer is complex that follows a few sentences later. There are a lot of condescending “quote marks” (note so self, stop using them so I don’t look like this editorial’s author) criticizing the blueprint for lack of scientific information, as if it were written by children. Look, those of us with cancer have a better understanding than most that this disease is too complex for the one simple cure ignorantly demanded in slogans. Even if the actual complexities are too difficult for the non-scientist to comprehend, please respect cancer patients enough to know that we do grasp the difficulties, but we are the ones facing death, that might be why we come off as demanding or impatient and wanting a deadline. According to Fran Visco’s rebuttal, it does not sound like the deadline document was written by scientists, but by those impacted by cancer, so the point of view is creating an overall plan to get scientists to do the work. Is not the deadline asking for the scientific work, not presenting it?

About the seventh paragraph in, the writer discusses National Breast Cancer Coalition’s argument that research is not motivated by sufficient urgency, and the writer argues that researchers indeed all feel the urgency, but only for goals possible of being reached. This disturbs me quite a bit, because I do agree with NBCC, I think research is motivated more by money than urgency, as in pharmaceuticals that can treat—for a prolonged period of time, and for a price—rather than prevent. Fran Visco mentions that when the goal was being created some scientists seem to think that cancer patients were ungrateful for what has already been done. The way she says this implies that the attitude is similar to some of the general public’s weariness of pink ribbon culture, in which it has been whispered that enough has been done for breast cancer already, and those of us complaining should just back off. I hesitate to get into that right now, but I will say this: breast cancer still kills many, and makes many more very ill and impacts lives in a big way. When you are the one being impacted, yeah, you’re going to demand more and it is hurtful to be told that enough has been done for you already. Couple this with a pink ribbon awareness campaign that has gone on for quite a while, I think it is excusable for the average breast cancer patient to demand better results. Silly ol’ me.

The writer goes on to suggest a few supposedly reasonable goals. I hate to do this, but I object to the suggestion of investing in a plan to encourage human papillomavirus vaccinations as something that NBCC shout carry out. While I believe research and efforts are needed to eradicate ALL cancer, I’m annoyed the writer cannot to stick to the point. What part of National BREAST CANCER Coalition and The BREAST CANCER Deadline is not clear? All cancers, not even just the ones that only affect women, deserve attention and a fight. I just think if one wishes to argue with a group about their goal, then stick to said goal, don’t suggest a new one that has nothing to do with that for which the group was developed! Sounds like the writer agrees with the general discontent that enough has been done for breast cancer, and breast cancer patients and researchers somehow owe attention to other diseases. As a breast cancer patient who has benefited from all the attention, I see the point. But that is for me, a breast cancer patient, to decide, not for one who has not had it. That may seem harsh, but I am too impatient with researchers right now to care about that.

Finally, my last gripe has little to do with the editorial’s author, just with the overall perception of breast cancer. The very first comment brings up Komen and pinkwashing, (with which NBCC has nothing to do), and the usual criticism of breast cancer donating being a “feel-good” activity. It is so hard to remember all the good that Komen and the pink crap achieved in light of the current annoyances they inflict on the breast cancer world.  Say “breast cancer” and automatically people think Komen, pink, and good will. The person commenting might understand that NBCC are separate and do not deal in “hope” without a plan of attack, but probably not (small kudos to the editorial’s author for acknowledging in the first paragraph that hope is not a good strategy for preventing/treating disease). The curse of breast cancer and the awareness campaign is that the slogans muddled the real story, so battling it now is like a brand new fight, one far from over.

Yes I am uncomfortable with some of the aspects of the deadline. For example, NBCC’s emphasis on a vaccine, that seems a little too lucrative/attractive for Big Pharma. Personally, I’d like more attention paid to crap in everyday products that cause cancer, and I’d like the removal of said crap. Toxic product removal would not take a long clinical trial as would a new drug, which was another point of contention for the writer (the length of a clinical trial apparently makes the 2020 deadline out of reach). Again, I do not expect complete eradication of breast cancer even within my lifetime. What I do expect, and believe National Breast Cancer Coalition delivers, is a change in the direction of research and how cancer is currently being tackled.  I believe NBCC has already changed the direction and the conversation surrounding breast cancer, and thus have a better shot of making some kind of progress against breast cancer than anyone else. The editorial’s author and scientists who seem to have already thrown in the towel cannot say the same.

Dear Medical Researchers, Philanthropists, and All Media

What has set me off this fine Monday morning? I had the local news on for the morning infusions of doom and gloom and fluffy stories. One of the health headlines: a new study linking alcohol to cancer deaths. According to the segment, this study was done by the American Journal of Public Health, and it is the “first comprehensive study of alcohol connected cancer deaths in 30 years.” Note it says “connected” not caused. The report fails to explain how alcohol consumption makes cells turn into cancer. In fact it only says that number crunchers analyzed how many people died of cancer who also drank alcohol. That is all. According to the study, alcohol accounts for 3.5% of cancer deaths, with 45 to 60% being people who had more than 3 drinks per day, and 30% being those who had about 1.5 drinks per day.

I went to the American Journal of Public Health website and did not see this report in any of the headlines, it may have been in one of the monthly journals but my lame computer skills seem to prevent me from being able to read them. It is possible this news is a few months old and my rural local news station is just now “getting around to it”. At any rate, as I am unable to read the report, I only have the local news video as my source of info. One issue that I’d like to know more about is how the conclusions were reached. The news video indicated that number crunchers simply took info about every person who died of cancer in 2009, and decided if they drank alcohol each day, then that is why they had cancer and died. There was no indication that other factors were considered, such as if the person lived near a factory that puts carcinogens in the environment.  I really hope they did consider other factors, because my understanding from the segment I saw makes me think that these analysts simply looked at alcohol intake and said “oh, that’s it right there, the reason why they got cancer and died”, and just flushed all other potential causes down some mental toilet.

Two other tidbits that irk me beyond reason:

First comprehensive study in 30 years? Really? Then why is it every damn time I absorb information from TV, internet, or print media, I see some item linking alcohol to cancer. I swear the information is now burned into my brain.  And until I read the report or hear more information filtered by someone who can effectively translate science jargon into understandable English, I have my doubts about this comprehensiveness.

And the stats—please–3.5% in my cancer experience is a really small number. Everything for a breast cancer patient is geared to the majority, such as using mammography as the standard for finding cancer, when 20% get false negatives. In spite of my false negative history, my doctor still is anxious to take my away from having annual MRIs which I trust a bit more than mammograms, so I guess we in that 20% don’t matter. Or how about the fact that most breast cancer patients are post-menopausal and even though there are standards in place requiring doctors to talk about fertility with younger patients, it rarely happens (I cannot remember actual stats on this, not being the maternal kind, and I’m too angry to be patient enough to find the percent, I only know it was rare). In cancer, majority rules, so why are panties in a twist about 3.5%?!!

My message is REAL simple today:

Medical Scientists:

Stop studying alcohol and cancer. The links have been established, and since I see “limit alcohol intake” every time I read about how to lower risk of breast cancer, I think this issue is drained. All those doing research, please talk to each other, acknowledge this fact collectively and find another potential cancer cause to study preferably one that cannot be turned around to be the fault of the cancer patient.

People Giving Money to Fund Studies Linking Alcohol to Cancer:

I don’t know if y’all just a bunch of teetotalers or what, but this issue is done and proven, it does NOT need further study and proof. If you don’t like alcohol that is too bad, stop punishing those of us who do.

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To Both Of The Above: Your fixation with this issue is preventing real investigation on other causes. We need to move forward. A percent like 3.5% means that if all the alcohol in the world disappeared overnight, cancer would still happen. In fact, maybe I wish all alcohol would just disappear, it would force you to study something else.

All Members of the Media (and Advertisers):

Stop reporting this. If I had a dollar for every time I heard it I could pay my cancer-related medical bills. So that means I no longer listen (except today, because I went off), indeed I change the channel/navigate away from the page/throw away the newspaper every time I see this kind of information, meaning I am not seeing advertisements placed by your major funding sources, and am not visiting or using these businesses. I’m trying to hit you in your wallet; maybe that will make you pay attention.

Do I really think my little rant will make a difference? No, not if I am the only one who feels this way. I hope others can see my point of view too.

Personal Change Or Corporate Cultural Change

I’ve gone off quite a bit on my blogs about my annoyance with the suggested measures for reducing the risk of cancer. There was always one point percolating in my mind about which I would not write, because I was not sure how I could make the point, or if I even had it correct in my mind.

Let me backtrack a moment to my high school days. I am a Gen Xer, taught almost exclusively by boomer ex-hippies in my public school. My teachers were the “get out in the street and protest” sort. I never, ever forgot one of these teachers criticizing the environmental movements of the time. This teacher pointed out that the politicians of the Earth Day era put the burden on the individual to recycle, reduce, and reuse, when it was, and still is, more effective if big industry would change their practices. I’ll never forget that, and while I do recycle, reduce, and reuse, it has always been in the back of my mind that my little pea-pickin’ actions were nothing compared to what is needed, and could be accomplished if various industries were monitored and properly motivated.

A couple of weeks ago, I came across an article called Forget Shorter Showers, which essentially said what this teacher said so long ago, but with a lot more facts and stats to prove the point. It gave me the inspiration to explain the story above, and to ask: how does this apply to cancer? Well, I suspect it may apply quite a bit.

It seems most articles I see that discuss causes of cancer, or ways to reduces risk of cancer, I read the same tired litany of suggestions: exercise, eat right, don’t smoke or drink (you know, the same suggestions thrown out in discussions about heart health, and nearly every other BIG AILMENT). It is much more difficult to find anything saying don’t use product X, it contains a massive amount of carcinogens, or move away from (some random area), because (X corporation) factory is pumping tons of carcinogens into the air/soil/water. No, the onus is always on the individual to do what he or she can to reduce their own risk. Granted, journalists cannot point a finger at a brand name and/or product and yell “cancer causing” unless there are proven facts supporting it—otherwise it’s just slander—but why is there no urgency to research suspected products and their cancer-causing ingredients in the first place? Why are the harmful chemicals in ANY food or product in the first place? How are these industries that can cause so much environmental damage allowed to continue to do so?

Sure, I can eat right and exercise like mad, and maybe forsake my beloved wine. But is it a guarantee that I will not get cancer again? Well no, because I have to breathe the air, use products with carcinogens, etc. So much is out of my control, and the corporations (corporations are people too, yuk, yuk) have nothing to keep them accountable. And keep in mind, “eating right” is not easy as it seems. So many food-as-cancer-prevention articles suggest eating organic; in other words, spending money many don’t have on products that are hard to find, perhaps unavailable. Hey, not all of us breast cancer survivors have the disposable income to spend on organic foods. And again, why is the onus on the individual to seek out the “better” food, yet there is no pressure to eliminate the harmful products in all food?

The article states that “we’ve been victims of a campaign of systematic misdirection. Consumer culture and the capitalist mindset have taught us to substitute acts of personal consumption (or enlightenment) for organized political resistance.” I think this misdirection extends to conversations about factors that cause and/or prevent cancer. The fact is we KNOW that industry has no problem putting harmful things in any and all products, or to wreck the environments in which they operate, don’t we?

Finally, the other day, it seems as if all the things I wondered about are about to get more attention. I got the email notification so many others did from Breast Cancer Fund about a report called “Breast Cancer and the Environment — Prioritizing Prevention”.  It seems a few influential folks are realizing that not enough breast cancer dollars are going to prevention and the study of environmental causes of the disease. According to a New York Times article, the environmental factors in the report include the “old standards” (eat healthy, no alcohol, etc.), but I’m glad it at least it acknowledges all the other factors, the ones that the individual cannot control. I hope this report continues to get more attention in the mainstream media, maybe even those silly women’s magazines I see at the check-out line at the grocery store, the ones that tout some random food as “preventing cancer” on each new cover. It would be refreshing to see headlines not dragging out the tired “eat this, don’t drink alcohol” headlines to sell magazines.

While I am ecstatic that there is “official” confirmation of issues I think need to be corrected in the conversation about breast cancer; as in that prevention is more important and that there just has to be more or bigger factors at play than love of wine and hatred of tomatoes causing my cancer, I know this is just a baby step. Getting industry to stop using cancer-causing toxins, holding corporations accountable, enforcing policy, all this will take time and energy.

The Breast Cancer Fund encourages the public to get involved and write to the U.S. Secretary of Health and Human Services regarding the action plan to be implemented based on this report. I, for one, will be doing this because I think there needs to be a large organized effort (involving groups of people, not just individuals) to pressure industries to stop putting cancer-causing toxins in the air/soil/water/damn near everything. I also think things like organic food should be the norm, not the expensive exception, available only to a few.

There are so many pieces of advice out there in print and on the web saying that people are more likely to survive cancer when they have a strong support system. I hope all those folks who support people in treatment can find the time to create a support community in favor of this shift in the conversation about cancer from treatment prevention; I’m tired of it being an individual responsibility.