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 is that metastatic breast cancer has been kept in the shadows or worse, even erased at times.
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 20-30% 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 (late stage) has for the most part, been left out of the pretty-in-pink 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 that people only want to see the positive, kick-ass, cancer fighter dressed in pink who defiantly “punches out” cancer kind of stories.
Most people want more. Most people want a true, 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.
To grab a copy of my FREE ebook, Pink Is Just a Color, Ribbons Are Just Ribbons: A collection of writings about Pinktober shenanigans, Click Here.
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?
Featured image above via Accidental Amazon and used with permission.
Note from Nancy: I wrote about cancer language, cancer worry, survivor guilt, loss, pet grief, COVID-19, DIEP flap surgery, life as an introvert, aging, resiliency, and more in EMERGING. Available at Amazon and most other online booksellers. It’d mean a lot to me if you’d consider reading it.
Carol A Miele
Thursday 21st of October 2021
Yes, I agree...it's time for BCAM to grow up & grow a pair!! Nothing has changed in Cancerland. There is still a huge disparity in the monies raised for early stage & for MBC (still only 5-7% for the latter. There is still a smiling pink culture for BC awareness. Maybe there needs to be a showdown with grim ads that spell out how many are dying of Stage 4, and all the collateral damage that make the lives of Stage 4 survivors difficult & painful, and all the young women in their 20's to 40's who are dying of MBC & are not yet at the eligible age for mammograms.
Of course, let's be real....mammos are not a preventative measure, they only tell you when you already have breast cancer! Why doesn't Komen put money to research better testing for BC? Wouldn't thermography at least pick it up earlier, when its Stage 0 or 1?? Maybe I seem impatient or dour, but I was diagnosed Stage 4 de novo 11 years ago & have not seen even a ripple of change re prevention. Thank God there are more drugs in the pipeline as its the only thing keeping us alive.
Thank you Nancy for addressing this issue and for keeping it alive! At least we can count on you to be in our corner. Bless you!
Nancy
Sunday 24th of October 2021
Carol, It is so past time for BCAM to grow up. I do think there has been progress in the last decade albeit slow. Too slow, for sure. I agree with you that the whole story needs to be told in ads and campaigns. Until the collateral damage is shown and until MBC is more openly discussed, the public will never understand the gravity of a cancer diagnosis at any age. It is not just a life's passage or bump in the road, at least not for most of us and most especially for folks like you with MBC. And you are so right about mammograms not being prevention. Thank you for taking time to comment. Hope you are doing well. P.S. In your corner. Always. x
Linda C Boberg
Wednesday 20th of October 2021
A stigma ... no, I don't feel that anymore with MBC than I felt with Stage 3. But it kinda goes along with all the barriers mentioned in your previous post. People are afraid so they block out what they fear - like Stage 4 Breast Cancer. Sorry. It's here. I and 149,999 other Americans have it. Give us a chance and do more research!
Nancy
Sunday 24th of October 2021
Linda, I think it does boil down to fear, to some extent anyway. I wrote about that in this oldie: https://nancyspoint.com/metastatic-breast-cancer-the-unspoken-words/ And yes, more research, please!
Tiffany
Tuesday 16th of October 2018
Nancy, I know that the here is a lot of Pink out there. I wish there was a month for all the colors. But honestly, the "Pink party" as you call it, is what got me through! My aunt was BC Mets. 6 years after original dx. Only after 5 months she passed, I found was dx with BC. BRCA2+ to be exact. Which chances are much higher for it to met. But while going through the treatments, the sickness, the fatigue, the tiredness, the worry, the stress of everything- My Pink party helped get me through! It may not be for everyone but it was for me. It started conversations with my family, with my friends, with my 13 year old daughter at the time. And yes, she will have to be tested in a few years for the gene. But it got us to doing more research so that we could help better inform our family & friends. Yes, I do believe there is not enough funding going into the research for ANY type of cancer, not just BC. But that's who you need to address this to. The ones who pull the strings & call the shots. I'm sorry that you don't like our Pink parties. You don't have to come. But for the rest of us, we LOVE them! It makes us feel that this is a step in the right direction. It makes us feel that we're not forgotten or just a statistic. It makes us feel pretty when the doctors tell us that to get through this step you will have to have part of your body amputated, then we're gonna cut out the things that makes us mothers. And all the meanwhile, you're gonna lose your hair, you're gonna lose weight & look like a ghost, you're gonna mentally, emotionally & physically go through a depression that makes you feel like you've lost your identity, your womanhood. I'm not worried about mets. I'm still trying to recover from BC as a 2 year survivor. And I'm especially worrying more so for my only daughter's future. I am 42 and emotionally struggling. I do not want her to be 24-25 & struggling the same way. So I'm going to throw my Pink parties. For me. I deserve them. You can jump on board with me or stay home. But putting down the Pink parties is not bringing the attention to what you want to see change. I'm sorry you are getting the two confused. But "As for Me and My house, we will party in Pink everyday!"
Nancy
Tuesday 16th of October 2018
Tiffany, I am not confused. You and I just have different opinions which, of course, is fine. I respect yours and appreciate you respecting mine as well. Thank you for sharing. My best to you.
Mike
Wednesday 26th of August 2015
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.
Nancy
Thursday 27th of August 2015
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.
Beth L. Gainer
Friday 17th of October 2014
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!
Nancy
Saturday 18th of October 2014
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.