Thursday, March 31, 2011

Of Causes and Controversy


I was supposed to have Seamus draw the winners of the Save 2nd Base t-shirts last night. You can see from the photo that he was too wiped out for that. And since there were only five of you (for reasons I think I’ve figured out…and we’ll get to that), I think you all deserve a shirt. I’ll get two more. As long as one of you can wear a small! So Chrissy, Sara, Rina and Pinder92 (that’s Stacey, I think…, and mom---I have your address!) email me with your addresses and size and I’ll get you the shirt. That is, if you still want it after reading this post. And I hope you do (want it…and read the post.)

This has been a dramatic week in the breast cancer blogger realm. A controversy has exploded over, on a micro- level, the Feel Your Boobies organization, and, on a macro- level, what’s appropriate in raising funds for breast cancer—and where that money goes. I was thinking I’d stay out of the fray. And then I realized that like a big, lumbering, drunken bear, I’d actually already stumbled into the woods of this controversy and I’d stumbled in on the side of the pink bunnies (not the strong, dominant bears that I’d like to think I’d be teamed with!). If so many folks were upset about Feel Your Boobies and Save the Ta-Tas…oh good inanimate object of reverence…what must they think of Save 2nd Base!! While this controversy was raging, here's my little blog with a big ol' photo and shirt giveaway for Save 2nd Base. And holy beagle—I have a Save the Ta-Tas t-shirt…and a Feel Your Boobies t-shirt….and (*the shame*) I like them. Maybe I haven’t given enough thought to all of this. Is that possible? Even having gone through breast cancer myself?

When I was first diagnosed and during treatment I continually had this vague (and then less vague) feeling that I was doing things wrong. Somehow, I was not handling breast cancer like I was supposed to. I always seemed to feel, act and express myself “differently.” I didn’t cry, I wasn’t angry, I wasn’t a big fan of pink, I don’t ever want to walk in a race/walk/ anything that might make me sweat, and I didn’t want to go to support groups, I didn’t pray or go to church and I didn’t spend any time worrying, panicking or even thinking about what caused my cancer—I figure if scientists haven’t figure it out yet, I’m not likely to figure it out sitting at my desk in my p.j.s at two in the morning. I got treatment, kept working, blogged about all the indignities of treatment, finished treatment, had a party and well…that was it. Oh no, wait, I got involved in a local breast cancer resource center and am actively fundraising for them. So, yeah, I did it all wrong, apparently. But I got through it (so far…we’ll get to that too) and I did it the only way I knew how. Eventually that feeling that I did it wrong went away.

But now it’s back. And it’s back because of this controversy this week. I’ve been reading a lot of blogs and Facebook posts by people I really respect and once again…I find myself on the other side. I find myself not able to agree with the people who seem to be really smart, caring, concerned, involved (in the breast cancer “movement” for lack of a better term) individuals. And what’s worse, I’m feeling marginalized and as though the work I’ve tried to do with The Pink Ribbon Place and fundraising is somehow wrong. Or not important. Or misguided.  And none of that is right. So while my initial response was to stay out of the fray…I can’t. I feel the need to speak up on at least a couple of points.

If you want the background on the specific controversy and the differing viewpoints (differing from me, not from each other), I refer you to several well-written blogs: Uneasy Pink, Nancy’s Point, The CancerCulture Chronicles, and Dear Mom: Can you Get Letters in Heaven. Start with Uneasy Pink because that’s where the controversy started (not through her intentional doing). Well, actually the controversy started on the Feel Your Boobies Facebook page, but Uneasy has screen shots of that on her blog (since many of the comments on the FB page for FYB have been removed—part of the controversy).  But I want to discuss things more generally—not directed at this specific happening.  I’d like to address the following arguments that I’ve heard in various places that I disagree with and just explain why.
1.       The idea/thought/argument that organizations like Feel Your Boobies, Save the TaTas, and, while they haven’t been mentioned yet that I’m aware of, probably Save 2nd Base as well, are somehow trivializing or sexualizing breast cancer; that these organizations are “dumbing down” the issue.  I see these organizations as making a difficult subject more approachable. It’s easier to get someone’s attention with a catchy or yes even “pretty” or, yes, even "sexy" slogan than to incite fear in someone. The cancer is breast cancer--I don't know what word could be used in any campaign that wouldn't run the risk of being sexualized by immature and irresponsible folks out there. (Feel Your Breasts was not going to be a less polarizing slogan, but it is less catchy). The discussion about the importance of self exams, and mammograms and early detection is an important one. It needs to start somewhere, and it makes much more sense, to me, to start the discussion (note, I said start, not end) in a more manageable, approachable way. A way that makes a person smile and then think. I don’t think it’s helpful to start a discussion with the horrors of breast cancer. If we scare people we may scare them into denial—plenty of people already put off mammograms or neglect self-exams precisely because they don’t want to know. They don’t’ want to think about it. Denial can be strong.  So the start of the conversation, the beginning (which is where these organizations are functioning) maybe appropriately has a lighter touch. A key point here though is who these messages are intended for. It’s not me and it's not likely my fellow bloggers. It’s not breast cancer survivors or their family and friends who’ve watched a loved one suffer from breast cancer. I don’t need to be reminded to feel my boobies. In fact, I have a team of people regularly feeling my boobies at the UCLA Medical Center. The audience for these organizations, at the level at which they, by their own mission statements, function is women, particularly young women, who aren’t regularly getting mammograms and maybe aren’t regularly doing self exams and maybe don’t even think about it much precisely because breast cancer has not yet touched their lives. There is a larger discussion of breast cancer and the need for a cure, of course. But these agencies aren’t purporting to cover that ground. They are simply trying to spread the word that early detection is important. It’s not the be all to end all in breast cancer and they don’t claim it is. But it’s still important. So I don’t think we can dismiss their work. A person can choose to spend their money elsewhere, of course, but I don’t think these organizations need to be ridiculed or attacked or even characterized as not worthy of support for the work they are doing. Which leads me to the next line of argument that I disagree with---

2.       That self exams don’t improve survival rates or, phrased differently, that because early detection does not guarantee the disease will not metastasize or that you will survive the disease, it’s not worthy of so much emphasis.  Again, I disagree. Self-exams are extremely important and cannot be over-emphasized. I know this personally. I had a clean mammogram in late July, 2008, and then found a palpable lump myself in November, 2008. I was diagnosed with stage 1c triple-negative breast cancer on January 12, 2009.  If I had simply waited for my next mammogram, my disease would have been greatly advanced and my chances of survival would have been greatly decreased. That's just a simple fact. My cancer went from undetectable to nearly stage 2 in 4 months. Imagine what 8 more months would have done! I have worn the Feel Your Boobies t-shirt. It has opened a lot of discussions with friends and strangers alike. And when I tell my story I very often hear that the person I’m talking to hasn’t ever done self exams, has put off their mammogram or never had one, or thought they were doing pretty good just because they had their annual mammogram. And I’ve always encouraged folks by saying we are our own best defense. Know your breasts; do your self exams.  And the shirt with its approachable slogan worked to open that dialogue and, I think, probably encouraged a few people to pay more attention to their breast health. Now, let me be clear, I do completely understand that there is the very real chance that even though I found my cancer early and received treatment early, I may in fact one day have a recurrence and I may find the disease—despite my early detection and self exam—has metastasized. I get that. But I also get that I have a much, much better chance of that not being the case because I did catch it early. Every single doctor I’ve talked to—and I’ve talked to a lot—has emphasized the better odds from early detection. I’d like to improve my odds as much as possible—it’s why I did chemo (which reduced my odds from 30% to 15% chance of recurrence.) I want every single chance at survival available to me.  Early detection provided me with an improved, though not perfected, chance of survival. So again, early detection and using every means available to us is an important message. I don’t think that because an organization takes on that message they have a moral, legal or ethical duty to also take on funding research for a cure. Feel Your Boobies mission statement is clear. They don’t mislead anyone into thinking they are funding research. If you want to fund research, absolutely, your money should be spent elsewhere. Which leads me to the next point of disagreement--

3.      The argument that "we’ve" moved beyond the stage where awareness should be the goal, such that research and finding a cure is the only or at least more worthy goal and that only organizations that fund or conduct research should be supported.  This I bristle at for several reasons. First of course because I spend a lot of time and energy fundraising for an organization that has a cute “pink” name (um, and I named it) and does not give a dime to research efforts (nor do we pretend to). The Pink Ribbon Place funds mammograms for un- and under-insured men and women and provides support, counseling, education, wigs, scarves, you name it…to anyone in our two-county area who needs it. Are we saving lives? You bet we are. Are we helping people suffering from this disease? Yes! Is that a worthy cause? Yes! Absolutely. Just as increasing awareness and promoting self-exams isn't going to help a woman today battling metastasized breast cancer, funding research today isn’t going to do one whit of good to the woman who finds a lump in her breast today and has no insurance or doesn’t know about mammograms or can’t get to a doctor or doesn’t know where to turn.  The Pink Ribbon Place will, on the other hand, be able to do some good for both women. Neither the awareness campaigns or the research campaigns can stand alone. They are both important! The “we’ve moved beyond awareness as a goal” bothers me as well. Because there’s a lot of privilege in that statement. “We” (and I include myself in that) who have insurance, have education, have knowledge of breast cancer and mammograms and self-exams can easily make that statement—yes, we’re aware, stop bugging me, let’s focus on a cure. But this overlooks the folks from different cultures, different socio-economic segments and differing backgrounds who aren’t, in fact, even in this day and age, aware of the need for mammograms, the need for self-exam or the fact that there are 26 different kinds of breast cancer and that there have been major advances in treatment. There are still people who fear doctors, who never get exams, who find self-exams shameful. Many, many people are still frightened horribly by the thought of breast cancer and assume that it always means radical bi-lateral mastectomy, chemo and certain death. And that simply isn’t true. It’s never fun, it’s never easy, but it also isn’t certain death. It isn’t even certain mastectomy or chemotherapy. That message isn’t out there yet.  I personally don’t want to see people operating from a place of fear—and that’s the risk of what  the heavy emphasis on the “reality” of breast cancer” can do. I want to see people empowered to feel they can do something about this—or at least give it their best shot. And if they need to be eased into the message with light-hearted campaigns, so be it. I don’t think FYB or Save the Ta-Ta’s or Save 2nd Base are in any way trivializing or making light of breast cancer. They are making light of self-exams. Sort of saying—it’s not that big of a deal to do a self-exam, so remember to do it. I just don’t see the harm in this. There’s room for both goals—continued awareness and the fight for a cure. Folks should of course be informed of what an organization stands for and where the money is spent, and make their decisions accordingly. I have no issue with that. If you think research is the best use of your funds--by all means, donate to research! If you just like the t-shirts, have at it. And if you want to support an organization like The Pink Ribbon Place that provides both awareness and direct services, but no research...well, here's a link: The Pink Ribbon Place. ;-) I find it all worthwhile. I've bought the t-shirts, I've donated and fundraised for the Pink Ribbon Place, I've sent money to the American Cancer Society, I've participated in two research studies for the Army of Women, I participated in a research study the night before my lumpectomy. I've done that because....I think it's ALL important.

Okay, Wow. Well, I didn’t really realize how much I did have to say on this. ( And you poor folks who just wanted the t-shirt…so sorry!) So, I think I’ll do this in two parts. This is enough for now. But I think I still want to discuss the “pink-ness” of the breast cancer movement and I did pull up the Feel Your Boobies 2009 income tax return (they’re a non-profit so it’s public record; and I'm a lawyer, so these things are easy to get) and I’d like to share that—because I think it makes it clear the organization isn’t a sham or just funding the salary of the founder. So stay tuned for part 2…or, you know, just avoid this blog for awhile.

20 comments:

  1. Teresa - thank you for this post and I appreciate the opportunity to continue with this discussion. My response may not be as detailed as I would like since I am recuperating from a major health issue , so my energy is not great right now. Anyway here goes.

    Point #1: The fact remains that breast cancer is SCARY. Why are we trying to cover that up with cutesy sexy slogans? To make it more "approachable"?I Have to disagree with you here completely. You talk about people being "scared into denial". I actually worry that this disease is being trivialized into denial.

    Point #2: If breast cancer mortality rates have not significantly decreased in decades, and incidence continues to increase, then how can we claim that BSE and Early Detection save lives? BSE and Early Detection may get you diagnosed and into treatment, that may or may not even be warranted, depending on the pathology of the cancer. But it is erroneous to claim these methods save lives. This claim is just not scientifically supported. For the record I found my cancer via BSE at age 33. I am now 40 dealing with Stage IV. BSE will not save my life. It got me into treatment, that's it.

    Point#3- the problem that I have with "awareness" is that it is invariably being funded as a priority to research. There is still so much we don't know. Research will give us better "awareness" information like REAL prevention, better detection and screening methods. But it can also bring us better treatments, and maybe just one day eradication. No one can ever convince me that Research shouldn't be the number one priority of any organization whose mission is to eradicate cancer. And other organizations who don't fund research, but fund awareness, treatment, screening I commend them, BUT what's wrong with taking a long hard look at these functions, to at least try and determine whether there are some economic synergies..like sharing and standardizing some of the educational information? Agreeing on screening protocols? Making a real commitment to move the fight to eradication forward? Why are so many organizations in this awareness space just reinventing the wheel over and over. The amount of money being thrown at these campaigns is just astonishing.

    One final point. As to metastasis. This should be one of the most important areas of research. If we could understand why around 30% of diagnosed women go onto metastasize, regardless of staging at original diagnosis, and find a way to stop this progression, we would be a very long way into at least getting breast cancer to a "chronic" classification and all but eliminate mortality. Yet metastatic breast cancer receives less than 2% of the entire cancer research funding pool. Why? Largely because it's not seen as an economically viable area of research. Too bad if you're Stage IV I guess. Can you see why a substantial number of us might be frustrated and angry at the current state of affairs? Our lives are literally on the line here.

    Teresa I just want something better. If it's too late for me, then other women in the future. We are stuck in a pink rut, that is just getting us nowhere fast. Look at the incidence and mortality statistics. Read the National Breast Cancer Coalition's 2020 White Paper. I'm glad women are being screened and diagnosed and treated but then what? We HOPE they live to tell the tale. But unfortunately that's still a very big maybe as I know only too well.

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  2. Anna, Thank you for responding and for responding so respectfully. As to your point #1--I suspect the reality here is that we are both right. That is, for some people, there is the risk of trivializing into denial and for others, there's the risk of scaring into denial. That's why I think both kinds of organizations are needed.
    As to point #2, I understand the statistics differently. And are you saying there's no point to early detection? Or Breast Self Exams? We'll never know of course, but don't you think the early detection and treatment you had at least gave you more years? And isn't that alone worth something?
    On point #3, I don't disagree. Research deserves more funding, absolutely. I just don't want to throw the baby out with the bathwater, so to speak. FYB raised $201,836 in 2009. That's less than what my cancer bills were and less than what yours are, I'm sure. It not a number that would put much of a dent in research and it's not a number that would exist without their t-shirt sales which so many folks also seem to be objecting to (sales account for $90,433 of that income; obviously, I'm looking at their tax return). I want something better too. I want more research. I want a cure. I don't want anyone dying from this disease. We can at least agree on that much. And I will read the White Paper. Thank you.

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  3. Both your post, Anna's comments and your responses are thought provoking and give someone like myself "pause." I do think that in the end we all want the same thing...a cure for breast cancer. (Heck I want a cure for all cancers.)

    Whatever it takes, including disagreement to keep this disease on everyone's radar is important. To make sure that organizations like City of Hope (one of my favorite organizations because they directly kept my mom alive for many many years through three different cancers, starting with breast cancer and are constantly researching new medications, and cures for the disease of cancer) or FYB and Komen and everyone else focused on this disease continue to receive funding is paramount.

    Thank you ladies for sharing your thoughts, your frustrations and sometimes your pain and your humor with the rest of us. I need to sit down and write a check because I do believe that every single dollar can make a difference.

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  4. Hi Teresa,

    I think you're the person who commented on my blog last night. Right? I absolutely applaud you for speaking your mind on this and doing so in such a respectful matter. Thank you for that.

    As I have said, ad nauseum I'm sure some would say, I don't think anyone should do away with BSEs, mammograms, initiatives to improve women's health care or support women in treatment. In fact, I think this is where some of the best grass roots work is done.

    What I think is that the conversation is severely out of balance. BSEs and mammograms are not the same as prevention or a cure. I think that message has gotten very muddled.

    For the rest, I'll defer to Anna Rachnel.

    I'll also echo something that was in Nancy's Point's post you linked:

    "In the past, I have held the position that I don’t care what an organization calls itself and in all honestly, I probably wouldn’t care what this one called itself either if it was delivering truckloads of dollars earmarked for research. But it isn’t. So I do care."

    I don't think that any of this has to be an "either/or" situation. Unfortunately, the awareness side of the equation has garnered all of the attention because it's cute, fun and easy to swallow. Women sick and dying are not what the general public want to see.

    I definitely see this as being a place for "both/and." We just need to rebalance. As I'm sure you know I found it very frustrating that the FYB people will not even entertain the topic.

    Thank you again for weighing in on this.

    Katie

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  5. Hi Teresa,
    Interesting post. I'm totally with you when it comes to humor. In fact, my blog is called Dispatch from Second Base. I had come down on the side of humor in a post called Our Boobies, Ourselves just days before the controversy broke. (http://bit.ly/hmYKfa)

    Then all heck broke loose and I saw what they were doing at the Feel Your Boobies FB page. I was one of the people who had my remarks censored. You know what happened because you saw all the other blogs, but here's my take on that as well. I still don't care if people call them boobies or tatas, but FYB went too far. (http://bit.ly/hUBiHn)

    I'm totally with you on early detection. My breast cancer was caught at stage 0 and that's only because of a mammogram. It's way too early for a lump you'd be able to detect. I could easily have gone on to develop invasive cancer; an oncologist told me my odds were 50/50 even after radiation. I didn't care for those odds.

    p.s. I need to get one of those save 2nd base shirts!

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  6. Teresa - thanks for your response.

    Point#1: I didn't address the issues that I also have with the apparent sexualization of breast cancer all in the name of "awareness", but Gayle Sulik, author of Pink Ribbon Blues) published this essay today which really resonates with me and summarizes very well the concerns that I also share... (http://gaylesulik.com/?p=6605)....I just wonder where we draw the line here? Would it also be appropriate to apply similar sexualized terms/slang to fundraisers for vaginal cancers, for instance? Men's cancers?

    Point#2: I am not saying there is no point to early detection or BSE. However, I think we are placing a LOT of faith AND money in screening methodologies that have not been scientifically proven to really change outcomes of breast cancer, most importantly mortality - and shouldn't that be the point?

    I cannot support campaigns that tout early detection and BSE's as "saving lives" or being somehow equivalent to a cure. These assertions are just not scientifically supported. That being said, every woman needs to be aware of her own body, and empowered to advocate for herself particularly with respect to medical decisions and treatments. Early detection and BSE have simply not proven to be the "holy grails" but right now it seems like that's the "best" we have. Trouble is that's not good enough for me, so I continue to ask questions. There is still much to be done on this issue, and better methods of detection can only come through continued research in this area.

    None of our present methods of screening are infallible, and false positives and negatives are still a major stumbling block. In my own case, I thought something was wrong in my breast, although my original Dr did not, an ultrasound didn't pick anything up, yet mammogram did. Yet I had the small, dense breasts of a 33yr old woman which mammogram is not supposed to work for. We seem to be espousing screening methodologies, based on popular conjecture, not scientific fact. And a couple of good news stories, does not a campaign make. Because for all the good news stories (like Leigh Hurst), there are the bad news stories which you probably don't hear about (like me). If the donating public are led to believe that BSE is the only viable alternative for young women then it kind of takes the spotlight off the fact that so much more research is needed. Especially for young women in the breast cancer realm. I'm all for empowering young women, and training them to be advocates for themselves, but in a way that is strongly educational and based on scientific evidence. I just think our younger women are smarter than many of these campaigns. Breast cancer is so much more than simply being about "boobies" as far as I'm concerned.

    As to your question about whether BSE gave me extra years by getting me to diagnosis? I honestly can't tell you. Science can't tell us. For all I know the chemo that I've had so far has done nothing and my cancer is simply taking its natural course. No one knows for sure. But one thing I do know is that I am going to die from this disease. BSE or no BSE. Early detected or not. My cells are marked in some mysterious way that sets me apart from other "luckier" women. So the more important question to me is, not whether BSE has made a difference to my life, but what is it about my cancer that is different? Again, research could give us these answers and we could make better treatment decisions with far greater certainty.

    To be continued.........

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  7. Part 2............

    Point#3: You say that $200k is not much of a number to punch a dent in research. Meaning we shouldn't worry about where the money is going so much? I disagree with you there and agree with LisaC that every dollar counts. Indeed, MetaVivor, the only organization solely dedicated to metastatic breast cancer research, awarded a grant last year of just $50k that has actually helped further knowledge in identification of a metastatic breast cancer gene. That's pretty exciting news to me, and I'm so thankful that MV takes the same attitude that every dollar does count. If we can set economic viability concerns aside, and start funding some of the more innovative research ideas, maybe we can get to that game-changing bit of information that could unlock all the mysteries.

    In short, we seem to agree that research needs more funding, but I'm going a step further to say that it must be a priority to move forward in this fight. How many "boobie"-type awareness campaigns do you think are currently out there? If you looked at the total money being raised by all of these campaigns, and looked at the amount of money being used for "awareness" as opposed to research, I am quite certain you would be shocked. We may as well be burning money. Like I said it's great that we're helping under-served women, but let's not lose sight of the fact that research is the only way to move us forward an indeed continue to REALLY help under-served women.

    Phew that was a long response to your response. I also just wanted to say I love the name of your blog. What is it about our furry little friends? They provide so much comfort in times of great distress and ask for nothing in return except a scratch on the head and bit of snuggle time. My dog is also my blog mascot, because he has the kind of attitude and zest for life that helps remind me of what's important. I can be a bit like a dog with a bone sometimes too, but I think in talking about breast cancer, that's a good thing.

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  8. Teresa,
    I had to read your post several times to properly digest it all! First of all, I am glad you decided to jump in and not stay out of the fray! I value your opinions, Teresa.

    You already know my viewpoints since you read and commented on my blog (thank you very much by the way). As an educator, I just cannont support "dumbing down" this stuff and I think that's what some of these oganizations do. You're right, words like "boobies" get attention, but not for the right thing, again my opinion. My twenty-something daughter says she and friends don't take FYB-type organizations seriously, well that's part of the problem for some survivors. The tactics feel belittling and demeaning. I believe young people deserve better.

    And as for research, well it has been sadly neglected in my view. I want awareness campaigns, too, however too many of these campaigns simply say, well, somebody else is doing that, research is not our focus. But, in reality others are really not doing it (well enough). I stand by my statement that Katie quoted above.

    Each of us has our opinions and as long as we are respectful, I think discussion is always good. Thanks for sharing your thoughts. Waiting for part two!!

    Also, if you get time, read the latest post at www.gaylesulik.com called "Boobies" There I Said It, Now May I Have Your Attention? (or something like that, I can't remember the exact title, but it's a good read.)

    And I know what you mean about feeling like you didn't do cancer right. How ARE you supposed to do it anyway?? Also, I do applaud your work with campaigns you support. There, I'm done. (finally!)

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  9. Thank you all for your comments. I'm considering and evaluating a few things and I think this has been a helpful discussion (and I mean here and on the other blogs...save for of course the FYB FB page which wasn't a dialogue at all). I will respond and actually I have some questions, but right now...I'm too tired! So I just have some quick responses:

    @Katie--yes, I was the one who commented on your blog. Twice actually, but only one got posted. I hope the second one did not offend you and thus get rejected. It certainly wasn't intended that way.

    @LisaC--so where'd you decide to send a check? ;-)
    @Anna--no, I don't mean to imply that it doesn't matter where the money goes. And the figure I gave was the gross revenue of FYB. I'll expand on that in my next post.
    @Jackie--I'm heading over to check out your blog!

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  10. Wow - so much passion on both sides of this issue.

    I think we spend way too much time in our culture worried about "right" and "wrong". Maybe, just maybe, different people have different needs/responses and there is enough room in the arena of Breast Cancer for all of us.

    So on the big three issues here:

    1. Why does it have to be one way or the other? Some people want a black and white poster that says in stark letters: "Breast Cancer is a serious thing and it can kill you." If that helps them know and give - put one up. Others are going to pass out, feel guilty, and look away if that brick hits them. But the word Ta-Ta's makes them giggle and comfortable. So put a poster up for them too. If you don't like Ta-Ta's - stay off the site. No one is forcing anyone to say "Boobies" out loud, however some people like to care and smile at the same time.

    As for sexualization: My partner has 1 breast. My partner is sexy. I have two. She says I'm sexy too. We aren't afraid of sex and we aren't afraid that talking about breast cancer in a less than clinical way is going to turn us into objects. Personally - If it had to be one way or the other - I'd rather people see me and think flirty sexy natural human thoughts than have them see me and just think "she had cancer." I'm not an object, and suggesting there's a sexual component to my being doesn't make me one.

    #2. This, again is a semantic debate. SBE's help some people find cancer BEFORE a doctor will. Any medical person on the planet will tell you EARLY IS BETTER. Does it "SAVE LIFE"?

    I don't need a bunch of statistics. What I know is this. Regardless of the outcome:
    "She felt a lump. She went to the doctor. They treated her." is better than "She never felt anything. She never went to the doctor. And no one did a damn thing."

    3. Why do we assume awareness takes away from research like its a one or the other proposition? If someone gives a 20 to support an awareness or support cause, can't they also give a 20 to research? Or can't the awareness cause give half the first 20 to research?

    But, lets be real. 10, 20, or 40 isn't going to create research. Research comes from millions. That comes from pharmaceutical companies, universities and foundation grants. WHY do those places fund research? Because they are AWARE of the problem (and the drug companies want to make a billion off the cure). So, let's review:
    Awareness = people aware.
    People aware run or support foundations/schools
    Foundations/Schools enable research.

    It's a chain, not a grudge match.

    So maybe, when we escape the culture of "right" or "wrong" - we can get back to the culture of life.

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  11. Jennifer Harp, PhDApril 2, 2011 at 7:56 PM

    I've been realizing that discussing breast cancer experience (the Real Thing) is like discussing Religion or Politics. People get so defensive and so fired up when those of us who've actually experience b.c.--or, as you say, experience it differently--that they try to silence us. I'm so glad that you are expressing and naming all that you are naming about the experience.

    Please stay with it.

    Be aware, too, that Jill and I are working on this emotional part of things, and overall health, sanity and perspective @ SenchaLiving.com

    Hope you'll find us there. We're following you and supporting your honesty and your story. Thank you.

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  12. Teresa, I checked all of my comments - spam and stuff and I don't see a second comment from you. I didn't delete it and I'm guessing you wouldn't have offended me. I guess it was lost in cyberspace??

    Katie

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  13. @Kellie, it's really not a matter of semantics -- it is a matter of settled science. A breast cancer detected early can still come back as Stage IV cancer. That message is totally lost in the awareness discussion.

    And I do suspect that awareness edges out research. For a perfect example, just look at what Komen funds - only 21% to research.

    All you have to do is look at how detection rates have gone up, but mortality rates haven't gone down. That's not hiding behind science, that's a very simple (and scary) fact, one that is completely excluded from most conversations.

    Awareness is an easy message, dying is a difficult one. Two percent of all research dollars go toward metastatic cancer research.

    Unfortunately, we can't rest of "live and let live" for one very important reason -- too many people are still dying.

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  14. Oh and one more thing... your $10 for research combined with several hundred thousand of your friends' $10 can make a difference.

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  15. Ok, I promise -- last thing. If you want to influence the discussion in the direction of a cure, check out the National Breast Cancer Coalition. They have an impressive track record.

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  16. Katie,

    Perhaps I am the one who is semantic.

    You say: "A breast cancer detected early CAN still come back as Stage IV cancer. That message is totally lost in the awareness discussion."

    I say: "A breast cancer that is NOT detected WILL become stage IV cancer. Check yourself out."

    Early Detection is not the only message - but its also not a bad message, nor a harmful one.

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  17. Kellie,

    That is not necessarily true. There is some mounting evidence that some cancers will never become life-threatening. Look at prostate cancer -- most men who die of other causes have prostate cancer. It just grows so slowly that it will never kill them. And if it's not going to kill you, why treat it?

    This is one of those questions that needs to be answered. Some of what we once thought to be true turns out not to be. That's why we need to concentrate on research, so we can make progress on eradicating this disease.

    Katie

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  18. Thanks for a really thoughtful piece.

    I thought of you last week as I was undergoing my annual mammogram (performed by an insensitive clog who treated my bosom like a recalcitrant side of beef, and okay, squished so hard I can still feel it) ... if not for friends like you, it might be tempting to skip this annual discomfort.

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  19. A few random comments. I find I have not a lot of energy for this anymore. It seems the camps are firmly entrenched and there is not a lot of room for compromise. But, I did want to mention a couple of things, in no particular order.

    1) I just happened to find out this last week about two organizations (well, one organization and one event) that deal with testicular cancer awareness. One is "Have a Ball" Foundation and another event is the "All Balls" golf day. So, um, yes, the men have "cutesy" names as well.
    2) FYB had gross revenues of $201,836 in 2009. Of that, $111,403 was from direct gifts or grants. $90,433 was from sales of products. After expenses (including salaries...we'll get to that) the orgianziation had a net "profit" of $22,232. Based on the tax return, they don't appear to give money to other organizations but instead spend it on their own awareness campaign. Founder Leigh Hurst received a salary of $40,138. She also has loaned the organization $33,230 of her own money and as of 2009 was still owed $30,595. I don't think it's fair to say she's raising funds for her own good or atracting attention so she can get more speaker fees or engagements. All in all this is a tiny organization which had appropriately narrowed their focus to somewhere they feel they can make an impact.
    3) It seems to me that some of the complaint is really that the "awareness" side is doing better raising money and getting attention than the research side is. Fair enough. BUT you can't be scolding the awareness side to do worse or telling them what they do isn't important enough. That is not productive. It's a lose/lose and everybody's frustrated. The folks advocating and raising money for research should state the case for research, find a method that has some appeal and go raise money! But don't bash the people who are doing it successfully. That doesn't make any sense. It's not an either/or situation and it seems if it's turned into one....well, it's research that may well continue loosing. And that's definitely not a good result. You don't become a winning team by calling the winning team a bunch of losers and asking them to quit. You become a winning team by....playing better.
    4) I suspect most of the money going to FYB or Save the Tatas is not money that would have otherwise gone to research organizations. Again, it's not an either/orI suspect people liked the t-shirts and bought them. Period. There was no "should I buy this t-shirt or send $20 to American Cancer Society" analysis. I'd even bet many of the shirts were bought as gifts (I have at least 3 of the "offending" t-shirts and I didn't buy any of them
    myself...I don't think.)
    5) I took Anna's suggestion and read the NBCC 2020 White Paper. It's worth the read and delves into the argument for funding research exclusively. I still don't agree with everything they say or are doing, but I learned some things. I'd recommend reading it (just google NBCC 2020 White Paper and you'll find it...I can't add a link here).
    6) I really worry a lot about some of the discussion that leans very close to "don't bother getting a mammogram or doing self-exams" and "early detection doesn't matter" attitude. That's harmful to so many on so many levels. Just because over-treatment MAY be a problem doesn't mean an early diagnosis isn't helpful. You have to be diagnosed before any treatment can be ruled in or out. And for folks like me, it made a big difference. I think those sorts of comments tend to diminish credibility on the issue that counts--the need for more research and more funding for research.
    That's enough for now. For me, anyway.
    Thanks to everyone who has commented and reached out. I'm not at all cutting off discussion if anyone feels the need for more. I just wanted to be sure to say thank you.

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  20. Hey you :-) I've been MIA from the blogosphere for almost a month, holy craaap. Quite my job, started a new one, yadda yadda yadda! But I am trying to get caught up tonight. LOVE that you're speaking your mind-- we are all entitled to do so, hence my post discussing the censorship issues I felt with the FYB site. I think you make some great points, as always, and hell, I own multiple 'cutesy' shirts that are so inappropriate from when I was a freshman in college that I can't even write them down bc I'm so embarassed hahaha. As always, I love reading what you have to say xoxo

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Comments mean you care. That's all I'm saying.