I was absolutely shocked to see this ad in the October issue of Prevention magazine:
This has to be the first time that Komen has publicly acknowledged Stage IV as part of their marketing campaign. Hopefully, Komen will have more ads about Stage IV in October.
Organizations are slow to change and whether this is partly due to the Komen organizational shakeup or the Metastatic Roundtable Komen hosted last February to seek information from 10 metastatic breast cancer patients, it is a welcome, small step forward and one that many of us would never have anticipated.
The ad, of course, is certainly not perfect, as it seems to imply that Bridget would not be surviving 7 years without her active, hopeful personality or her doctor’s ‘fighting’ for her. Does that mean that those who died sooner had the wrong medical team or the wrong personal attitude? Certainly not.
Call me crazy, but maybe some day we’ll actually see a Komen ad that says this:
“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”
What should be our reaction now? I think we should be open and supportive of the change at Komen. Contact your local Komen organization and let them know you are metastatic (or Stage IV) and appreciate the metastatic support cited in the ads and hope Komen will be increasing funds for research into the causes and process of metastasis.
I know this will be particularly difficult for many of us who have deep feelings of estrangement and resentment toward Komen and the pink ribbon culture. But some within the Komen organization are trying to change things and that needs to be encouraged and supported.
“A journey of a thousand miles begins with a single step.”
(Lao-tzu, Chinese philosopher)
Ginny Knackmuhs MBCN Board member
MBCNbuzz 
Well said. Very well said.
Nothing will ever change unless we stand up and become advocates for MBC and raise greater awareness ourselves. I am working with my local Komen affiliate and they are very open and interested in helping raise more awareness, support, and hopefully research dollars for MBC. …..“Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.” -Margaret Mead
Meg–good to hear from you. Hope you’re doing well and i love how you have been speaking up for mbc. A strong voice we need! Ginny
I write a blog and addressed a post about this issue in July. It was a shock when someone from Komen contacted me and invited me to be involved with them to improve their knowledge and inclusion of metastatic breast cancer. It might be one small step, but this ad that you posted is encouraging. If we from the MBC community get involved, perhaps we can help to facilitate the changes that need to be made.
Well said Donna. I have followed you on the bcm blog and agree that reaching out is important. Since my daughter-in-law was diagnosed with Stage IV two years ago at 32, I have taken info and hope from the bcm site when I could not find it elsewhere!
Thank you, Donna. i found your blog at donnapeach.com and will be following you.
Bridget is lovely, and she works for Komen!
She blogs at http://mybiggirlpants.blogspot.com/
I have a ton of respect for her, as I do for you, dear Jen, as she is also not letting cancer keep her from having a life.
I’m skeptical of Komen’s true motives. It feels more like Komen trying to rebuild its tarnished brand, However, it’s something from an organization that has for too long been very noninclusive of the metastatic community. Is it enough? Hardly, but it’s something … time will tell won’t it? I’m glad to hear you were contacted, Donna.
Thank you Dear Ginny for sharing this with us-it’s a small step in the right direction so do you feel that the petition that the think tank is putting together should be directed at Komen? Who should our petition be aimed at if we want to advocate for 30% research funds instead of less than 3%?
Promising? Yes…agreed! But we have a long way to go! I just launched a petition urging Komen to increase funding for research (including 30-for-30), improve transparency, and foster responsible products and partnerships. (The petition can be signed here: http://t.co/3gnxZPAK)
I think the pink organizations are starting to feel the pressure. The MBC community’s voice is getting louder and louder. We can no longer be ignored. The pink organizations stand to lose a noticeable number of supporters and donors if they do not take firm steps in our direction. And those steps must go much further than helping patients find medical care. To truly make a difference the pink organizations need to give a decent share of research funding to MBC research. They will need to make a significant step forward toward 30%.
And we need to make certain they understand that funding research to “prevent” metastasis is NOT what we are looking for. That is what has been going on all along … preventing metastasis is why primary breast cancer patients have surgery, chemotherapy, radiation and go on aromatase inhibitors, etc. What the MBC community needs is research aimed at halting the progression of metastasis AFTER it has already metastasized. Thirty percent of BC research for the 30% of BC patients who metastasize. That’s what we need.
[…] features a person with metastatic breast cancer! You could have knocked us down with a feather. https://mbcnbuzz.wordpress.com/2012/09/10/stage-iv-ad-from-komen-is-this-a-crack-in-the-pink-wall/ Is this progress? Share this:TwitterFacebookEmailMorePinterestLike this:LikeBe the first to like […]
Vicki
thanks for your blog reference and for starting the Inspired MBC Advocacy FB group.
Ginny
Thanks Ginny. I think both approaches to advocacy are valid, as a member of a recognised group, but I think there is a need for some more spontaneous advocacy as well that can react to a situation for quickly than a formal group. I also think that it helps METAthrivers to feel that they can actually do something to make a difference, even if it is just to sign a petition. If anyone wants to join our think-tank, which is a closed group, go to
http://www.facebook.com/?sk=lf#!/groups/InspiredMBCAdvocacy/
Wow…I would have never guessed this came from Komen. Maybe they are finally starting to get it!
Deb
So nice to hear from you! Hope you are doing well.
Ginny
I think it’s a positive step and a positive message. I do believe in the body, mind, spirit connection. Research is most important, but the other comes into play. It doesn’t have to be all or nothing and it’s not dissing people who died to state that hope is a good thing. Should we just tell people they’re screwed unless they find a cure?
I want to apologize for my tone; I’m pumped up on steroids from my chemo. LOL! I appreciate your bringing this issue to light. And I do think it’s a really great start for Komen. Perhaps they will put their money where their mouth is and fund more metastatic research. Then they can be seen as a trendsetter that is implementing true change.
hopefully it is not just a one time ad, hopefully there is a campaign of some sort-I would like to see different messages with different spokespersons and even a man on the cover!!! I would like for them to have ad’s talking about Triple Negative, IBC and HER2 and BRCA and start educating for real!!!!
Yes! I am a triple neg BRCA1….7 years out from treatment. Chemo LOOKED like it worked wonders, but who knows? Only time will tell.
I’m triple negative BRCA1 positive. … I along with the other BRCA2 and IBC, and HER2 members have been even more forgotten and smothered by the pink cloud of Komen! With no funding for research, that means limited treatment options after we reach stage IV. Most doctors won’t even attempt surgeries or other treatment modalities that are offered to hormonally positive patients. We are being told “There is nothing I can do for you”… Research is the key to finding new options for us!! so, Komen needs to stop spending millions on spewing propaganda and printing out campaign posters! They actually need to use that money for research and DO SOMETHING!!!. Put your money where your mouth is Komen!!!
Oh my gosh, I am pleased that Komen is finally mentioning Stage IV (isn’t early detection the end-all be-all?) but agree that I am somewhat reluctant to believe this is a turn in their P.R. We celebrate that the word got out there this once, and we hope and pray that it is the beginning of a tidal wave of honesty. Thanks for posting it with your well-worded analysis…I will most definitely be getting in touch with my local Komen Chapter.
Love to all…we don’t have to make it through the next ten years, we only have to make it through today. One day at a time, my friends!
~Collleen
[…] MBNCBuzz just posted this advertisement by the Komen Foundation. It is the first time that the Komen Foundation has acknowledged metastatic breast cancer, Stage IV, in a marketing campaign. […]
Thanks Kathleen for referencing this post. Will be following you!
ginny
Wow, I’m 7 years out from the end of treatment and NED, it was a stage 2….but always looking over my shoulder. In my travels I have made dear friends with women who are stage IV and know that could be ahead for me. For Komen to address this is a big sea change, I think. Personally I can’t stand all the pink stuff and the hoopla.
[…] Ginny Knackmuhs of the Metastatic Breast Cancer Network has posted a new ad from SGK that actually acknowledges Stage IV breast cancer. The ad itself is a good start, though SGK only takes credit for helping Bridget Spence find a new doctor and nothing about the paltry percentage of money raised that Komen allots to research. Knackmuhs make a brilliant suggestion for what Komen really needs to say in an advert like this: The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future. […]
[…] Breast Cancer Network posted about Komen’s latest ad campaign. You can find their post here: Stage IV Ad from Komen. The ad looks like […]
I think it’s just a bunch of lip service from Komen. It shouldn’t be about a campaign. It should be about action! Let’s face it…. they are master manipulators. They have been giving all of us the biggest global pink snow job for years now!! This just looks like more propaganda, the same thing they have been so good at spending millions and millions of dollars on for over 20 years with questionable results. Propaganda is for manipulating the way people think, but research can actually save people’s lives. That’s where the millions should go. Having no trust in them, what so ever, I’ll wait to see how far they are willing to go with this new campaign.
Hey everyone I too am a breast cancer survivor and I think you have all become a little negative. lets not forget that without Komen the awareness of breast cancer would not have spawned all the other organizations raising money for research and not to mention the lives they have saved just by people doing breast exams and making the disease so public that young women like Nancy brinker who did die have a chance to live because doctors have more information. It would be great if everyone put as much energy being mad at Komen toward the what is really going on and that is research for more drugs not for a cure. If enough money was actually going toward understanding why we get the disease and less toward dirty lobbyist for the pharmaceutical companies then we would probably have a cure!
[…] Stage IV Ad from Komen – Is this a crack in the pink wall – MBCNbuzz […]
It’s about time. I just don’t trust Komen fully.
Jill in Seattle (just celebrated 10 years with mets)
Agreed. Thanks for publicizing our post! Wow–10 years living with mets is the kind of story we all want to hear. would you consider writing up your story for our website? Send it to mbcn@mbcn.org. For October we are planning on changing our home page to feature 31 stories of mbc–adding one more each day. We need to put a face on this disease! Thanks, ginny
PS I tried to post to your blog, but couldn’t get by the CAPTCHA
What a great idea Ginny and MBCN! That’s getting the message out!!!
Sorry, I still find Komen to be evil.
When do we get little blue ribbons for Prostate cancer?
Dress all the men in cutesy blue outfits and have fundraisers called “Save the Balls”. Or howzabout Biking for Balls. A nice spin on Race for the Cure, n’est pas?
Oh, but they don’t amputate men’s balls with the horrifying frequency they amputate women’s breasts.
Stage 1-4? Mets? What about some research into REAL alternatives like better surgery and alternatives to costly, dangerous, and debilitating chemo and radiation treatments? Not to mention chemical castration w/ tamoxifen.
With all the millions raised … this is still these are still the standard of care? Really???
And now we should be happy Komen acknowledges cancer is actually SERIOUS and kills people?
Sorry for the rant but women die every day due to lack of care or lack of alternatives to breast amputation, radiation, and chemo.
I don’t see how this ad helps those women.
Where are the advanced surgical techniques and advanced bio-chemistry that might offer REAL cures and more humane treatments?
Where is the support for ALL cancer patients? Why this mystique with breast cancer? Can it be that lung cancer or prostate cancer just aren’t as cute & sexy as breast cancer … so no one built a billion-dollar money machine on those diseases?
As I have said, “WE finally pushed Komen to the wall”! And it is my understanding Nancy Brinker did not step down? Ego or narcissism or both? I know it can’t be the pittance they take in yearly, yeah right…N~
Susan G Komen was the original face of mBC …. how she got lost is all of this is an absolute shame…… Susan G Komen– I am the face of mBC—-Cure IV mBC
Besides raising money for research, they should do so much more to prevent it–like try to get all the chemicals out of our food and water. Other countries have such a low breast cancer rate…why can’t the same be true here.
Monday morning, following the MBCN conference, I emailed a woman at Komen in the Survivors Program to express my concern about clinical trials and metastatic breast cancer drugs. She is escalating the email up the ranks. I am a past president of Komen Nebraska and sat on Komen;s metastatic breast cancer roundtable. As a 25 year survivor, living with metastatic disease since 2010, and a 20+ year Komen volunteer, I too, want to see the organization move radically into the mets arena TODAY, but I do know that they have increased the amount of research dollars that go to recurrent and metastatic for the upcoming granting cycle. And that is good news.
Dear Kate-Komen has Mets roundtables? WOW! Can you use your contacts to find out who might be sitting at the Houston Texas mets roundtable cause I’d like to rip their head off!!! I cannot believe that Komen blew into town on their PINK carpet and asked for the City Hall to be lit up in PINK for the Komen event-they requested the first 2 weeks, INCLUDING the 13th of which all days were PINK!!! They knowingly and willingly lumped us into their PINK! They did nothing for us to seperate the obvious-the 13th has been nationally recognized since 2009 and they started on stage IV campaigning just this year and yet when their was opportunity for Komen to step up and work together with our community, they did not!!! When I went to go advocate for our community and our mets org’s MBCN and Metavivor, I was given the respect and kindness by my city officials, unfortunately, they said I could not display the stage IV colors of Metavivor (only one trademarked) on the 13th as this day was taken but I could have the latter days or wait till next year-so I TOOK THEM!!! If Komen does not do the right thing and start representing us on our National day of recognition then they can stick their stage IV campaign you know where…..My Mayor saw the issue clearly, she did not hesitate to correct the problem-the problem Komen created in the first place and this is not just a Komen issue, I heard from Kimala that in her home state ACS did a walk on Oct 13th for breast cancer and was told she could not enter the event with her brochures/flyers on Metastatic Breast Cancer as that was considered a “Special Interest” group-she has filed a formal complaint with the ACLU! This is a pimple that is coming to a head and ready to POP! I will not tolerate Komen’s blatent act of being a hyprocrite!!! They only came out with the stage IV campaign as they need sympathy from the public as they are losing donations left and right!!!!
Hi Theresa – I believe you may be misinformed. Komen is supporting metastatic breast cancer survivors in their battle against breast cancer. Please see this:
Click to access MBCAD%20Komenlink%20Article.pdf
And while the tide is turning in favor of metastatic breast cancer patients (there are many more metavivors now than there were 10 years ago), I believe the scientific community will start to focus more on the research that must be done to support us. The only problem is, the government is reducing funding for these scientists and the nonprofits such as Komen (who happens to be the largest nonprofit supporting breast cancer research, including metastatic breast cancer, and in many researchers’ opinions, the best in the business for doling out research money) are losing funding too. Wouldn’t it be great if we could unite our forces and rally our support behind Komen to make sure there is money for research to be conducted?
Wow do you work for Komen? Or are you just a marketing professional hired by them?
[…] this year. Even Komen finally came out with a stage IV ad… a monumental feat for us! I thank Nancy Brinker for opening her eyes, even though it took so long to get us […]
Very good article. I am dealing with many of these issues as well.
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[…] MBNCBuzz just posted this advertisement by the Komen Foundation. It is the first time that the Komen Foundation has acknowledged metastatic breast cancer, Stage IV, in a marketing campaign. […]