It's time for BCAM to gorw up!

It’s Time for Breast Cancer Awareness Month to “Grow Up”!

There are a lot of things wrong with the pinking of October, more commonly of course, known as Breast Cancer Awareness Month (BCAM). You can read about thirteen things wrong with all the shenanigans here. But the biggest failure of the whole darn month of pink madness (of course, none of this is really about pink at all) has been the near exclusion of metastatic breast cancer in almost every realm of the awareness hype for years and years now. It’s time for BCAM to “grow up” and more fully embrace the metastatic breast cancer community; in fact, it’s way past time.

In a month that is supposedly all about support, how can the segment of the breast cancer community most in need of that very support be the group most frequently shoved to the side lines?

When you think about it, this is not even logical. If we’re being logical, shouldn’t the group in greatest need get the most support?

Or shouldn’t there at least be some balance?

There has been so much emphasis on early detection for so long now that this is what most people hear and remember about the messaging. The messaging that says, catch it early and you’ll be fine. Maybe. Maybe not. Of course, early detection is a good thing, but it is not the whole story as 25-30% of breast cancers (regardless of stage at diagnosis) can and do metastasize later on, sometimes much later on. With all the attention given to early detection, the other end of the spectrum (the late stagers) has for the most part, been left out of the pretty- in-pink-picture-book-like breast cancer stories.

It’s time for BCAM to “grow up” and tell the whole story, which includes telling about the full spectrum of this disease, and at the same time, ditching the stigma so often attached to metastatic breast cancer.

Yes, there is stigma. There is a blame game that goes on when one is not diagnosed early, an unfair and inaccurate assumption sometimes made that if you did not catch it early, it is somehow your fault. If you did catch it early and yet your cancer metastasized, again, the stigma often comes in because sometimes it’s assumed that you must not have followed the how-to-do-breast cancer handbook carefully enough which, of course, is total BS.

This is all so unacceptable.

And how can it be that after all these years of awareness, so many people still know very little, or nothing at all, about metastatic breast cancer?

I say it’s because the complete story of breast cancer has not been shared for all these years, and not just in October. It’s like leaving the most significant chapter out of a book. There is a gaping hole in the story. The same could be said about BCAM. There has been a gaping hole in BCAM’s story for years.

This might be BCAM’s biggest failure of all.

It has been far easier and more marketable for pink ribbon culture to primarily portray the feel-good, let’s-put-a-happy-face on breast cancer mentality. It’s been assumed (wrongly IMO) that most people only want to see the positive, kick-ass, fighter dressed in pink who proudly punches out cancer kind of stories.

I believe most people want more. I believe most people want a truthful, complete, non-edited-down and not overly-pinktified version of breast cancer awareness.

People can handle the truth.

We all deserve nothing less and without a doubt; our sisters and brothers living with metastatic disease deserve more support (of all kinds) than they’ve been receiving in Octobers past. It’s time for that to change. In fact, it’s way past time. It’s time for BCAM to “grow up”.

Because as many of us have said time and time again, breast cancer awareness without mets awareness isn’t awareness at all.

We will not forget.

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When did you first learn about metastatic breast cancer?

If you are living with metastatic breast cancer, do you feel there is a stigma to a stage 4 diagnosis?

 

It's time for Breast Cancer Awareness Month to grow up!
Image via The Accidental Amazon & used with permission

 

 

 

 

28 thoughts on “It’s Time for Breast Cancer Awareness Month to “Grow Up”!

  1. Great post, Nancy. Those who claim to support breast cancer and then run off with all the proceeds, or those who purposfully quiet mets becuase it’s not “easy to sell or celebrate” . . . they are hurting more than they are helping.

  2. Well im gonna have to slightly disagree. Yes there are bad people who abuse the ribbon. Welcome to what people do in the real world. As I explain to donors who have been duped in the past if you stop giving because of this, the bad guy won. What the pink ribbon has done for us. ITS RAISED AWARENESS!! It has supported millions of women either through providing life saving research or individual montetary relief. The people that abuse this are starting to be called out publicly. The ribbon was a morph on the Aids Awareness ribbon which was red. It was Estee Lauder, the CEO is a survivor, that gave it popularity. Estee Lauder in turn started the Breast Cancer Research Foundation. But I tend to be way more positive than most… thats how I survive. On another note if you were looking to insight mixed feels to drive traffic to you blog, well played… #newbloggerwhosjuststartingtogetit

    1. Melissa, If the pink ribbon has been such a success, why do so few people even know what metastatic breast cancer is and why is less than 7% of the money being spent on mets research? That’s not good enough for me. I don’t write about these things “looking to insight mixed feelings to drive traffic to my blog”. I write about them because I advocate for more genuine understanding about the total spectrum of this disease and because I want more emphasis put on research, specifically mets research. Has some good come from the pinking? Absolutely, but at this point, we need to expect more. Thank you for reading and sharing some thoughts.

  3. Nancy,

    It past time for awareness to hit a mature adult stride. The Metastatic Breast Cancer Alliance report released today pulled no punches about the failures of the awareness movement. I can’t wait until you have time to sift through the report.

    Thanks so much for all your work on behalf of #MBC and a great post.

    hugs,
    jms

    1. Jody, Awareness definitely needs to hit a more mature, more adult stride. I read your excellent summary and I will eventually get to reading the entire report. Thank you for stopping by and for your kind words too. xx

  4. Nancy –

    Wonderful post, and thank you for ALWAYS deleving so sanely into this. I do hope things are starting to shift – but until we lay down our pink products and fully educate ourselves about MBC, we still fall short.

    XO,
    Lori

  5. With over half of my life being lived as an adult, I have been well aware of the pink ribbon campaign. However, the first time I became aware of mbc was upon my original dx. I certainly had NO idea that bc could be dx at stage iv. That is testament to the fact that the pink ribbon is doing a very poor job of telling the whole story. I was (and still am) very disappointed with the message that the pink ribbon conveys. I am glad that the mbc is beginning to get more press. Thank you, Nancy, and to all of the advocates out there that are helping to make this happen.

    1. Barb, Your comments speak directly to that glaring pink ribbon awareness failure. That gaping hole is still there, but slowly this is changing. Thank you for sharing and for your kind words of support.

  6. This is a great post, Nancy. Yes, it is time to expect more. We can’t expect progress with just the same old narrow messaging year after year. I think you’re right that people do want the facts.

    1. Lisa, I just can’t accept that people want anything less than the truth, which means all the facts must be shared not just during BCAM, but all year long. The messaging has to change and I think it is, though of course, not fast enough. Thank you for reading and commenting too.

  7. I am certainly learning that many people don’t understand a lot about metastatic breast cancer, but we need to help them understand both sides. My friend told me today that when she mentioned my diagnosis someone responded “didn’t she check herself enough” and her hand hit her head and she realized how much people just don’t know.

    1 in 8 is too many. 1 in 3 is too many on top of that.

    1. Mandi, Oh my… well, sorry you have to hear stuff like. I have a feeling you’ll be setting more than a few people straight about lots of things. I am thinking about you as you figure out what’s next. Great to connect last night during the chat. I didn’t realize at first who I was talking to! lol! Thank you for reading and sharing some thoughts. I know you’re a bit busy.

  8. Nancy, I so very much appreciate all the effort you put into helping the metastatic community. It is with the help of people like you that one day, MBC will be a nationally known disease and hopefully, that will bring about the great increase in stage IV cancer research funding that is so desperately needed today, With significantly increased funding, we can and will save lives.

    1. CJ, Thank you for the kind words. They mean a lot to me. And I agree completely that with significantly increased research funding, we can and will save lives.

    1. Martha, I am sorry you are dealing with all this. I have lots of posts and lots of resource sites listed on my breast cancer resource page that might help. I hope you’ll check some of them out. Good luck with chemo and everything else too.

  9. dear Nancy, thank you for a most insightful post and for the powerful message that sites issues such as logic, the dumbing-down of MBC, ditching the stigma, and MBCA working more diligently to cover the full spectrum of BC and providing a much needed and deserved balance of information that includes MBC . I thank you for your passion together with your tireless effort of speaking out with ideas and words that matter. and I will read the report from the MBCA report that Jodi spoke of’

    much love,

    Karen OXO

  10. This year seems to have actually shown more mentioning of MBC than past years. Of course, it was so low, the only way we had to go was up. I see some hope that people are beginning to notice we exist. Maybe that will open the way to more research for MBC.
    46 years ago my grandmother was diagnosed with MBC, given pain meds, and sent home to die. 19 months ago, three days before the birth of my first grandbaby, I was diagnosed with MBC. I get treatment and a few years, for which I am thankful, but still no cure. We have made progress, but you would think in almost 50 years, we would have made more progress than changing a few months to a few years.

  11. I love this post, Nancy! You are so right: the pink party hasn’t invited metastatic patients in. They often feel excluded and ostracized and this breaks my heart. Frankly, I don’t think there should be any partying, period, because breast cancer is nothing to celebrate, whatever the stage. Great post!

    1. Beth, The exclusion breaks my heart too. Thankfully, this is changing, but not not enough by any means. And there certainly is nothing party-like about breast cancer at all. Thank you for reading and commenting.

  12. Nancy, I just started reading your blog. I truly wish my late wife had been able to read some of these posts. The short version is that she was diagnosed at 39 with Stage 3 BC, with lymph node involvement. After a couple of years of the “garden variety” treatments common in the pink ribbon crowd, they discovered liver mets. 5 years of almost non-stop, extremely debilitating treatments followed until hospice entered the picture in October of 2013, after a failed attempt to surgically implant theraspheres. Five months later she passed. All during this time, I can’t begin to tell you how difficult it was for her, and the family, to hear all the well-intentioned, but totally ill-informed, hogwash from the pink ribbon-educated crowd. She was blamed for having mets by some, as if she did something to cause it. She was told, repeatedly, that because some Stage 2 pink ribboner had survived, she would too. We were even discouraged from participating in a few of the pink ribbon walks around the nation because there’s some segment that see’s metastatic BC as “bad publicity for the cure.” Rejected by the very people we thought would understand.

    She’s gone, but her bravery lives forever in the hearts and minds of those who witnessed it or walked with her on her unnecessarily lonely road. Thank you for your posts here. It is high time that the BCAM program DOES “grow up” and recognize the totality of the disease…including those who don’t “win” the race.

    1. Mike, Oh gosh, I am so sorry for your loss and I wish your wife could have read some of my posts too. I’m glad you are. I’m sorry things were made even more difficult for her by all that pink hoopla hogwash. And blaming her for having mets, well, that’s just plain cruel. Sadly, there is a lot of misinformation still out there and with October here soon, we’ll be hearing lots of the same old, same old. But things are changing, slowly, yes, but they are changing and rest assured, the voices of those living with mets are being heard and we will not forget those who have died. We will not. Thank you for taking time to share and again, I’m sorry for your loss.

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