Pinktober Revolution
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I just posted this on my Facebook page:
I'm going to ask something special of all my Facebook friends. October, breast cancer month is coming up and everything turns pink about now. Not all manufacturers donate to the right charities, if they do it at all. Not everything pink means that a breast cancer patient is being cared for. PLEASE, think before you pink. Breast cancer is a disease, not a marketing tool!
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Your last sentence Barbe~well said!
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It is critical to the thousands suffering from Stage 4 illness and to the general public that the voices of metastatic breast cancer patients be heard.
Metastatic breast cancer claims 40,000 lives annually in the U.S. As one of 155,000 U.S. people living with MBC, I have a vested interest in educating people about this incurable disease and urging them to support research that helps people with advanced breast cancer live longer.
Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process: "It's responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget."
http://www.heraldtribune.com/article/20110118/znyt04/101183004?p=2&tc=pg
"All too often, when people think about breast cancer, they think about it as a problem, it's solved, and you lead a long and normal life; it's a blip on the curve. While that's true for many people, each year approximately 40,000 people die of breast cancer - and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community."
-Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston.
http://www.heraldtribune.com/article/20110118/znyt04/101183004?p=2&tc=pg
"Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a disease.
For 65 percent of those who are diagnosed, it will be the eventual cause of death.
When we ignore reality in exchange for feel-good fund-raising activities, we alienate and forsake those for whom cancer is a major cause of suffering."
-Gayle Sulik, author, "Pink Ribbon Blues"
The late Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network (MBCN) in 2004. MBCN is a national, independent, patient-led, nonprofit advocacy group that provides education and information on treatments and coping with the disease.
http://www.facebook.com/pages/Pink-Ribbon-Blues/113230458731603"The breast cancer community had become a place for ‘survivors', not for people living with breast cancer every day of their lives. We were not being seen or heard. No one was trying to meet our needs. No one was listening."
-Nina Shulman, co-founder of MBCN ( www.mbcn.org)
"We don't fit in with all the cheering about ‘beating the disease'. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure."
-Ellen Moskowitz, past president of MBCN (www.mbcn.org)
National Metastatic Breast Cancer Awareness Day: Oct. 13National Metastatic Breast Cancer Awareness Day is Oct. 13. It highlights the needs of the metastatic breast cancer community. Treatment is ongoing and unrelenting for the 155,000 women and men living with metastatic disease.
http://mbcn.org/developing-awareness/category/mbca-day/
In October, 2009, the U.S. Senate and House voted to support the designation of October 13 as a National Metastatic Breast Cancer Awareness Day.
http://mbcn.org/developing-awareness/category/mbca-day/
Please share 13 Facts Everyone Should Know About Metastatic Breast Cancer (http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer/).
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U Can't Spell Metastatic Breast Cancer Without "Me"....But We Can't Spell "Cure" Without "U"0
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GREAT quotes Major!! I'm adding lines to my Facebook status to keep it popping up in peoples pages. These will be very powerful!!
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Our mission is to eliminate corporate profiteering from pinkwashing and and educate potential donors to fund research to find a cure for breast cancer. No more pimping the pink ribbon.
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155,000 living with metastatic bc.....that seems like a low estimate. Doesn't sound right. I know that stat is for the U.S. only, but still, sounds fabricated.
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Gracie, definitive metastatic breast cancer numbers are elusive. How many people in the U.S. currently have MBC? Pundits cite numbers ranging from 155,000 to 160,000. But this is a number arrived at by shaking the statistical equivalent of a Magic-8 ball that responds to every query with "Reply hazy, try again" or "Ask again later."
NCI and SEER database record only incidence, initial treatment and mortality data. What happens in between? Your guess is as good as mine-or that of NCI and SEER.
Patients are not followed for subsequent medical outcomes. Neither the SEER cancer registries nor any other population-based cancer registry system collects information on disease recurrences.
"There has been interest in tracking recurrence but given the degree of cost, time and effort to collect accurate incidence information, the capability to track recurrence for breast cancer and over 100 other types of cancer would require a considerable additional commitment of time and resources," an NCI media spokesperson said. "Due to the current fiscal climate, expansion of our registry systems is unlikely. Should our fiscal situation change both nationally and at the state level - since states have the legislative authority for cancer being a reportable disease - tracking recurrence is certainly an item that could be considered."
Consider that almost all people with MBC were first diagnosed with earlier stage breast cancer. (Only 6 to 10% presented with mets as I did). Do you think maybe we should track breast cancer recurrence?
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The Magic 8 Ball is a very good analogy. I live in a city of approx. 180,000. Twelve oncs....mine alone has 9 mbc patients. The math doesn't work for me. Either it's being trivialized or, as some of us metsters know, you can go from zero to sixty in a week. Or, it's the old addage "Too small to be seen on scans". Maybe shitty diagnostics (or radiologists) have some influence on that number. Hard to say. But to answer your question, should we track breast cancer recurrence? No, why bother? More money spent on something that in the grand scheme of things that will ultimately make no difference. Having said that though, maybe if it were properly tracked, the true number would be shocking and they'd finally get their asses in gear.
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Sorry, getting off topic. That stat pissed me off.
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I wrote to the Katie Couric show and asked that they do a show in October that is a more realistic look at what it means to have breast cancer instead of the usual happy pink crap. I specifically requested that someone living with stage IV breast cancer be featured so that the audience could have a more honest look at this disease. Have not heard back yet but I just sent in the request last week.
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ENGLISHMAJOR! WOW, just so perfectly WOW:
U Can't Spell Metastatic Breast Cancer Without "Me"....But We Can't Spell "Cure" Without "U"
and to further Barbe's theme, beneath this - which I hope is used as STATIONARY across the top of all communication:
Stop the Pinkwashing. Breast Cancer is a DISEASE, not a marketing opportunity. STOP trying to make money from this disease, please give generously to all those working DIRECTLY to find a CURE.
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I also agree that the stat for metastatic disease seems much too low. I know too many people living with this - I would like better numbers because that might bring home that this is a DEADLY epidemic, not a blip in a woman's life.
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I think we also need to really decide what the outcomes of our Revolution would ideally be:
1) We want -Komen and other organizations to decrease the amount of funding going toward "awareness" and increasing RESEARCH funding. Unless you've been living under a rock, you should be aware.
2) We want companies who merchandise during breast cancer (with pink versions or promotions) to:
a) identify clearly on the packaging to which breast cancer related organization their donation is going (last year Staples had tons of things with no marking as to where the money was going).
b) give only to responsible organizations with low admin costs and whose donations primarily fund research or support patients directly
c) merchandise should not CAUSE breast cancer (so-called PINKWASHING) such as wine, foods with rBGH, hazardous chemicals, etc. I'm on the fence about the pink pepper spray though!
3) Companies should identify whether there is a cap on their donation. If so, consumers should determine if the cap has already been met before buying.
4) Consumers bear some responsibilty in choosing products wisely.
Honestly, the Think Before You Pink group already has a jump on us. I don't mean to be a Debbie Downer, but I think we should focus more on helping that mission, such as the stickers mentioned early, letter writing campaigns, etc. The Facebook post was intended for familiy and friends rather than industry. However, we might be able to modify it to post on the FB pages of companies that are known to Pinkwash, for example. That would be interesting...
I do plan to wear my shirts everyday in October WITHOUT WEARING MY PROSTHESIS. That should be fun. Hey lady, why are you half-flat?
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When I was selling mattresses and boxsprings, Serta had a promo where they'd donate up to $250,000 to breast cancer RESEARCH depending on sales. The sales quotas were met and Serta DID their donation!! I don't know to whom, though. I've supported them ever since. So we can add Serta to the good guys list. Do y'all have Serta in the USA?
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First, let me preface this by saying, I'm Canadian...and a smoker, so I don't have any idea what American cigarette packages look like. The pictures (and statistics) on our packages have the most horrific images and dismal statistics. Didn't make me quit smoking
, but it makes me think an awful lot about it. Sure as hell made my kids not pick up the habit.All this to say, Shells, you make a very good point. I think we have to focus on one item, that oodles of people use or see, put the horrific bc statistics, especially for metastatic, including pictures, on that packaging and run with it. Sadly, I don't think t-shirts are going to cut it (make us feel better, but doesn't really change anything).
If you can think of that one elusive product, and a marketing slogan, I'd be more than happy to make some calls to see if the company is game.
If you're cigarette packages are the same in the U.S. you'll know what I'm talking about. If not, I'd be glad to post some pictures. It might spark some ideas.
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Just wanted to add, now that I've actually looked at the package.....there's the picture, followed by a little blurb about how you can change things.
i.e. "You can quit. We can help. Call 1-800-***-****, along with a website. It could easily be changed to "You can help. Donate to _______. (and by this I mean organizations other than, ACS, CCS, Komen, etc., since we all know they spend the majority of funds for awareness). We have enough of the frickin' awareness already.
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Yes, ma'am, Serta is great! And love the sheep...good to know. Making new shirts today since I have time. Also gonna visit Staples with my $8 rewards check to get stickers to print on and take BACK to Staples to stick on the pink racks!!!
I just went to the Staples website and found that the Post-IT notes company (3M) is donating $.50 for every 3-pak of pink postits to City of Hope which is a non-profit NCI cancer center. They do research as well as treat patients. So I might get some of those to stick around!
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Gracie, our posts crossed. I like your ideas a lot.
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Way to go Post-It notes!!!! Got a million of them around the house. (Maybe they secretly knew you can't remember sh*t, once you've been through chemo after chemo.
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There is an interesting web site, foundationcenter.org/findfunders/990finder/, that lets you check the IRS form 990 for organizations such as City of Hope, Komen and many others to see where the money goes. I've used it for a local foundation that helps women pay for mammograms, doctors appointments, etc. It opens the eyes, that's for sure.
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EnglishMajor, I appreciate your points. My aunt died suddenly last month of a recurrence she didn't even know she had until it was too late. People just think you get treated and go on. I'm sure that's what she thought as well. 1 cm tumor, double mx, no other treatment recommended. 10 years later, she fell in the shower and broke something, that's how she found out she had cancer in her bones, lungs and liver. In a matter of weeks she was gone. How can we convey this?? Why isn't chemo manditory? So many things make me mad about breast cancer. I checked out the MBCN website. It says there that 20-30% of those with an early dx will develop metastatic disease. I wonder if that is apart of the awareness campaigns?
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Ummm...mandatory chemo? Let's not get carried away!
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Well I suppose it would depend on your pathology. I keep thinking about what happens to your biopsy site after they puncture the tumor capsule. The cells are broken loose and some are evacuated through the biopsy needle (most use vacuum assisted biopsy now). I wonder how many escape into the bloodstream during the biopsy? I had 5 cores removed from my tumor. That is 5 holes with the opportunity for tumor cell seeding. This is why usually at least radiation is suggested after lumpectomy. I think given the time between a biopsy and when surgery occurs, there is plenty of time for those remaining cells to circulate and become established somewhere else in the body.
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Some people who did chemo turn up stage IV later. Might help, might not, really no way to know.
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SpecialK, I also sent a note to Katie Couric a week or 2 ago, as well as NPR Talk of the Nation, Ellen Degeneres, and Rachel Ray. None of them have responded. Will keep you all posted.
Saw my BS on Friday and mentioned how frustrated I was with fragmented care and paying out of pocket for so many things. She reminded me of the many women who have only Medicare (IF they qualify - I know several women who work for minimum wage, are self-employed, or otherwise underemployed without insurance, who were diagnosed with breast cancer after significant delay in even finding a doc who would take them, and then further delays, and then not able to afford a cami or sports bra for post-op, much less $$ for PT or massage therapy that has helped get me through some of the worst of post-op). She said the office crew really worked to find the woman some help. I donated all my hair and head coverings to our local cancer center, who provide them to those who cannot afford those "luxuries." I don't really love my BS, but she is technically very good, and she really does try hard, given the economic climate she is working in.
I am pretty sure most women are aware of the need for screening (unfortunately only 85% sensitive, meaning a whole bunch of us got past years of "negative screens" before being diagnosed at a fairly advanced stage), and I don't really know what Komen and the other organizations actually DO with their "education" approach. Is it simply organizing walks and runs, passing out pink ribbon doo-dads? I would like to understand how all these organizations actually think, because that may give us a clue as to how to approach them so that they could potentially be more effective, get better publicity for themselves rather than negative publicity, etc. It could become a win/win rather than a competition with "winners and losers." What would it take so that we could ALL win????
As mentioned by a couple of you, the chemo is a crap shoot. I personally would not choose chemo again, mandatory or not. It caused me permanent damage, and I still got recurrence, and am waiting for bx results to see if I have recurrence again this year. The "promise of a potential cure" by my PCP at the time was one of many factors that pushed me into chemo, and I resent it. However, I also think chemo should be made available to those who would benefit from it, regardless of stage of diagnosis. You can take as much of the cancer out by surgery, but there is the theory that it is a systemic disease from the beginning, and those tricky cancer cells are hiding out all over the place, just waiting for an opportunity to pop up again, and chemo is the best OVERALL answer, but only if those cells are sensitive to the chemo selected.
We need more research into how to identify which chemo to use for which cancer, just like we have testing to tell us which antibiotic to use against a specific bacteria (called sensitivity testing). They are working on testing tumors for their genetic make-up, which holds a key for many kinds of cancer (those with Her2, and lots of other cell structures and metabolic processes), and using targeted therapy makes a whole lot more sense than using a "shot-gun approach" with everything you've got (surgery, chemo, rads, hormonal, targeted, etc.), which may also reduce the harms done by using some of these treatments that aren't going to work for that particular tumor anyway. WE NEED MORE RESEARCH!!!! I know some scientists are getting very close to some answers, but putting that knowledge into clinical practice is a long way away yet.
BTW, I got a Serta mattress about 8 years ago, and they were giving away a little stuffed sheep with it. Unfortunately it was pink, and I hated that pink commercialization of BC even then. It was soft and cuddly, so I put it in the give-away bag, hope some child gets some use of it. I think Dannon Yogurt and a whole bunch of other corporations donate $$ to breast cancer in October, pasting pink ribbons all over their labels.... I believe some of them truly mean well, and pat themselves on the back for "doing their part" but I wish there was a better way, one that didn't smack of corporate greed, but that is part of our American culture.
While I was in the BS exam room, there were 3 magazines, all dated pre-1990! So the one from 1986 had 5 cigarettes ads, and I had fun for about 20 minutes reading, calculating nicotine/tar ratios, looking at design elements, etc etc etc, along with those required warnings from the Surgeon General. Will post more on that later if anyone is actually interested, especially after reading this extremely lengthy diatribe. Sorry, sometimes I just get verbose!0 -
Loved your diatribe. ;P
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"Some people who did chemo turn up stage IV later. Might help, might not, really no way to know."
I would be an example of that person. DD AC/T last summer, NED in October, Stage IV in May.
Slash, poison, and burn comes with no guarantees.
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Hate to ruin your weekend ladies, but I just read this today .....can't remember which magazine it was, but I'm thinking Family Circle..............they had a page showing the new "bullshit" pink stuff for our upcoming big Focktober celebration..................
Asic's sneakers.....deep pink........for every pair bought (they are $100.00 a pop.............they will donate $2.00 to BC.........well ain't that just a "hoot"........I was pissed.........
Now Kohl's has something going, can't remember what, but they are donating all the proceeds to the BC charity that you wish to have it go to.........thought that was a good one......
Ok, but imagine how much Asic's is making on each pair sold, if it impresses people who buy them...........but 2 friggin dollars for us.......I say "shove it up your ass"...........having a bad day today............
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LuvRVing, your "slash, poison, and burn" really resonates with me. I used a couple of different terms for the first: chop and butcher....
You may want to actually look at how BCO is funded - you may be surprised at some of the corporate sponsors and supporters. You can check out their financial statement. You can check out the HUGE number of folks that contribute to making this resource available to us, including the medical experts, financial experts, research experts, volunteers, and etc etc etc. I was a little surprised, a little impressed, and a little grateful to some folks I had not even considered. Dr. Weiss, one of the founders of BCO had received financial support for her work from Komen, lots of others flaunting pink, pink ribbons, etc.
I still completely support the idea of Pinktober Revolution, but agree that we really need to have a carefully articulated mission, just as BCO has.
Ducky, so sorry you are having a bad day. They happen, hang in there with the 24-hour rule. We get so ticked off so easily by every little thing when we are feeling bad, and that's OK! Sending you special lovingkindness thoughts tonight, hoping tomorrow is a better day. (((((Ducky)))))0
