It has been an incredible few days at this year’s National Breast Cancer Coalition (NBCC) Advocacy Summit. From meeting wonderful “virtual” friends at last, to briefings on the cutting edge research and progress toward Deadline2020, both my heart and mind have been expanded. Tonight is our annual celebration, and tomorrow we will be on Capitol Hill making our final push on behalf of both “The Accelerating the End of Breast Cancer Act” (HR 3067) and continued funding of the Department of Defense Breast Cancer Research Program. Overall, I have to say…it’s been AMAZING.
BUT…
Nothing is simple. Last night there was a meeting of women with metastatic breast cancer. It did not rise to the level of a scheduled session, but rather was a “meet-up” held after the official day was over, and organized by…well, I’m not quite sure who organized it. It was a little disorganized.
The first thing that struck me was how young we were. Of the 30 or so women, and one man, I’d have to guess that 25% were under 50. That alone was devastating.
Next, one young woman rightly posed the following question: If NBCC priorities are focused on the prevention of breast cancer and the prevention of metastasis, where does that leave us? She was sweet about it. I am pissed about it! It leaves us dead. We have been written off by those should most support us. The truth is, I’m not quite sure WHERE we stand within NBCC, but I do know that the language currently used is, at best, alienating – and at worst, down-right insulting. Or destructive… Or offensive… Or all of that. And I love NBCC, what it does and how it does it. It is important and impactful. But women living with mets are marginalized, and it’s time for that to end.
It is an odd thing to be live with life-threatening, incurable metastatic breast cancer, and be marginalized within the breast cancer community. I don’t ever forget that I am the “worst nightmare” of women who have or had breast cancer; my life is their greatest fear. It makes sense that keeping a distance feels safer.
Urged in one session to find my “sound bite” I came up with this: “I am 45 years old, I have metastatic breast cancer, and there is no cure.” Seems to me that might just launch an important conversation with anyone, including our elected leaders, about the importance of what we do. What women, what organizations that support women, what national breast cancer groups fail to see, however, is that WE are their greatest asset. WE are their rally cry. WE are their best argument for the funding and support they seek.
To add insult to injury, there is remarkably little support for MBC in this country. 30% of women with breast cancer are likely to become metastatic, yet according to Metavivor (the ONLY organization to focus on MBC research), only 2.5% of funding is funneled into mets research. Of course, one must acknowledge that women with mets are often urged into clinical trails for new drugs. What is less well known, though, is that most of those trials are for drugs to prevent or treat early stage disease. We are, in a painfully real way, the human guinea pigs, used to save the lives of others.
ON THE OTHER HAND…
This is the first year I’ve attended the conference as a woman living with MBC. I know I upset many women when I tell them that until you are LIVING with mets, you can’t truly UNDERSTAND mets. For some it is as if I am accusing them of being insensitive. For others, they feel it is a competition…that I am trying to claim a more “true” or “real” cancer. It’s not that at all.
Within our #bscm (Breast Cancer Social Media) twitter community we have begun using #FearlessFriend (btw, the “#” flags a searchable term on twitter) to indicate those among us who are prepared to stand by their friends with metastatic breast cancer, despite the high chance of losing them, despite knowing that they can’t ever really “know” what living with mets means. These are women and men, doctors, survivors and friends, who just want to BE with us while we are BEING.
I am the first to argue that nothing is simple, and the world exists not in black and white, but in shades of gray, and their are two sides to every story. That’s good…it keeps us honest and our advocacy clear. But I feel strongly it is time to demand that our voices are heard, and our lives are honored before we die…let us lend our urgent voices to the dialogue.
regrounding 
May 07, 2012 @ 16:22:25
Happy and proud to stand by you, Lori. Very well said.
May 07, 2012 @ 16:25:30
thank you, my fearless friend!
May 12, 2012 @ 20:21:08
Lori I am so glad you wrote this and you expressed it so well. My best friend Lila Bailey died 4 months ago from MBC. I agree that there is no way I can understand what it is like to have mets and what kills me is that there is a deadline of 2020 but for Lila the deadline was too late and for your future I don’t know where we will be in the process of ending breast cancer. I thought that we were supposed to reverse MBC but that is not what I am hearing. Lila and I went through our primary chemo together but I knew when my recurrence was a matter of surgery and not mets while her recurrence was mets all I could do was try to be there to stay with her through the process. What she showed me was incredible grace, dignity and courage passing through a process of trying to take each chemo and have the best quality of life that she could with it. All I can do is continue to #FearlessFriend and thank you for the special moments as you try to live in the moment even though your life is now consumed with MBC. Hours on the internet searching for those guinea pig trials, listening to all of this science where researchers clap for a drugs that has 2 3/8 months PFS, while instead they should be asking all those with MBC to stand up and be applauded for why we care so much about ending breast cancer, that’s at least why I am passionate about making a difference..because I am helpless when it comes to stand up with you and say we did it. and you are alive and well without horrible side effects from either chemo or the disease. Most important your voice counts and I thank you for being so open.
May 07, 2012 @ 19:47:10
Lori, when I, Jody, Gayle Sulik, Katie from Uneasy Pink and Rachel all went to NBCC last, we came away feeling the same way. We felt very disillusioned. We talked a lot among us about how they needed to stand up for mets, to get with the 21st century as far as social media goes, and not to duplicate the arrogance of orgs like Komen who also have acted like they are the be-all-and-end-all. We need everyone, especially people living with mets, to change this conversation and steer this ship on the right course. Did you know I’m the blog admin for the new METAvivor blog? I would love you to write something for it. Or maybe we could republish this. Let me know. You’ve got my email & you can also message on Twitter. Big huge honking Fearless Friend hugs.
May 11, 2012 @ 14:20:23
In fairness to NBCC, I believe they feel that their dual emphasis on “Preventing Disease” and “Preventing Mets” addresses your concerns. I am not yet sure if this is an issue of priorities or one of language, but in that room at that time there were many women who still felt like they were on the outside looking in, and THAT is what matters!
OH…and those hugs were perfect! THANK YOU!
May 11, 2012 @ 14:45:15
I have metastatic breast cancer and I was in that room for the “meet-up”. I was disappointed in the comments and undercurrent present at that gathering. It felt to me like angry women seeking a target and putting it on NBCC. It is the National Breast Cancer Coalition that has stepped forward to change the conversation from awareness to survivial and science….setting a deadline to end breast cancer by January 1, 2020. Now, ALL can either keep talking “poor me”: “I’m excluded”, “I’m forgotten”, “I’m marginalized” or get into the action and help end this damn disease. Its an easy choice for me!
May 11, 2012 @ 14:56:10
Marlene, I could not agree with you more! A lot of things were happening in that room…but what concerns me most is that we get on the same page. I believe that NBCC would be well served to shift language away from “preventing” mets to curing” mets. Regardless I remain 100% committed to Deadline2020. We must find a cure!
May 07, 2012 @ 19:54:19
You aren’t alone, Lori. There are more of us out here trying to understand metastatic disease, write about it, searching for researchers doing credible research, and keeping the fire burning than you know. It must feel isolating but please remember, we are here and we’re with you.
Thanks so much for writing. We need you.
#FearlessFriends
jms
May 11, 2012 @ 14:21:42
The very best thing is that I have never felt alone in this! There are moments, here and there, when I am surrounding by people who don’t “get it” but I simply “educate” them! LOL
May 07, 2012 @ 21:24:25
Thank you for expressing this so well. My mother died of metastatic breast cancer 21 years ago. She often felt abandoned by her doctors, by everyone. It seems that many things haven’t completely changed. Despite being dx’d myself, I don’t know what it’s like to live with mets.
One thing that has changed is advocacy spurred on by social media. We all need to be #fearlessfriends
Thank you again…
May 11, 2012 @ 14:25:55
I am so very sorry for your loss. I met a woman at the NBCC Summit who had lost a daughter to mets. I think when you live that close to it, you understand it in a very different way than women diagnosed at an early stage and think it’s all the same. It simply isn’t. A #fearlessfriend is someone who doesn’t run away when we are diagnosed with mets, and who can understand that no matter how connected we might be, we are walking different paths of this disease. We can’t get enough of those!
May 11, 2012 @ 14:47:12
AMEN!
May 07, 2012 @ 22:05:27
As always, you articulate the issues so clearly. The dialogue must change. I don’t like being part of the myth that is perpetuated as BC has become a ‘Brand’. I have lost 3 friends since I was diagnosed and anyone who takes the time to truly understand the disease knows that there is no way to prevent recurrence and every survivor lives in fear of that. But count me in as one of those who will not look the other way. It could happen to any of us and I refuse to accept the status quo that has marginalized this disease and wrapped it with a pink ribbon. I love your blog — thanks for keeping it real. #fearlessfriends
May 11, 2012 @ 14:31:18
Thank you so much for your kind words! I saw a tweet today from Nancy Brinker: Pink Major League Baseball bats to benefit Susan G. Komen as featured on the Today Show this morning…
SERIOUSLY! I suspect the “brand” is here to stay…we shall just have to shout louder than they can! They have money at their core; we have lives. I think we’ll win!
May 08, 2012 @ 05:11:23
I struggle in reaching out to my mets friends because I feel they isolate themselves by marginalizing my own fear. When I say things like “any one of us is one scan away from having mets as well”, they discount those fears by saying that the likelihood of that is practically nothing, and that I should get on with my life and forget breast cancer. If anyone should know how very real that terrorizing thought is, it should be a metavivor, but I have not found that to be true. It’s bad enough that my own loved ones discount my fears, but a survivor? I never expected that. And of all of the clinical trials available for my type of breast cancer, 90% of them are for stage 4 survivors and I don’t qualify so how is it that such a small percentage of money is going to stage 4 when that is all I can find available right now? My heart sincerely goes out to women who need a cure and not prevention. That includes all of us at any stage we find ourselves. For most reading this article, we’ve already been diagnosed at some point in time, whether recent or not. I write this on the eve of a biopsy of a new mass. Don’t tell me I can just forget breast cancer.
May 11, 2012 @ 14:36:21
First and foremost, I wish you the very best news from your biopsy and I hope you’ll let me know how it turns out!
I also appreciate your candor. I understand exactly what you mean; there is a divide between us sometimes. We ALL need a place at the table. We cannot afford to alienate ANY voice! The truth is while we are not all a scan away from having mets, but what matters most is that we don’t know which ones of us ARE, and so we live with that perpetual fear. 30% of us will be diagnosed with mets. While it’s not a majority, it is still a reasonable, realistic fear. I guess I’d ask your forgiveness when we with mets would do just about anything to be worrying about it again…
Please, really…let me know how you are!
Lori
May 08, 2012 @ 05:30:05
This is such an important post, Lori. I do not have mets. I did lose my mom to mets. Do I fear it? Yes, but i do not “fear” those living with it nor do I fear talking about it. Quite frankly, I’m tired of the “fear excuse.” I’m tired of keeping those living with mets at a distance for whatever reason. Until we include metastatic disease and those living with it in the conversation, we have failed and failed miserably.
Count me in as one of those #FearlessFriends. Keep speaking out because as you mentioned, you are the greatest asset. Thanks for writing this. And remember you are not alone.
May 12, 2012 @ 12:50:59
I certainly DO count you in as a #FearlessFriend. Your comment reminded me of the very day when I had to face this decision. I had “met” a woman online through YSC and after chatting for some time about treatment protocols and the like she mentioned that she was Stage IV. I am sad to say, it gave me pause. This woman, until an hour or two earlier, meant nothing to me…I could just as easily keep her at a distance, rather than let her in and face my own potential loss. Needless to say, that last for about a minute. She and I never did meet (her choice), but it was a good, early lesson about treating others as I would hope to be treated. Like you, I strive to forever be a #FearlessFriend!
May 08, 2012 @ 06:06:46
I feel angry that the MBC women got a ‘meet up’ and not a full session. If I organized the conference, I would want a panel of MBC advocates. I would want their voices center stage so that all the researchers and attendees could have the experience you describe of saying “Look how young these women are! And we have so little to offer them. We must do better.”
I am disappointed in NBCC for keeping you and others on the margins.
May 12, 2012 @ 12:54:43
I hear you! But I also have to say, mets, be it prevention of mets or death by mets, was IN FACT on the agenda. As I said early, I think NBCC needs to refine their language, and that is the purpose of this blog entry.
However, it is also our responsibility to insist our voices ring out loud and clear! One of our asks on Capitol Hill was support of HR 3067 – The Accelerating the End of Breast Cancer Act. I am proud to say that MY voice helped bring on four new signers this week!
May 08, 2012 @ 06:42:36
I’d go a step farther and demand that your voices are heard AFTER you’re no longer living. Living with a terminal diagnosis sucks…. So does being the surviving partner of a cancer patient. Cancer isn’t contagious… And neither is death.
May 08, 2012 @ 13:22:19
I’m with everyone else on this. Ignoring this crucial sector this way is unthinkable. “The Cure” is about women with mets. We can’t talk about one without talking about the other. I stand with you and will do what ever I can to move this dialog forward. So disappointing and yet, it’s the heart of what the pink movement is all about!
May 11, 2012 @ 14:36:19
I respectfully disagree with you. The “pink movement” is about awareness…and who could possibly NOT BE AWARE of BREAST CANCER…..
May 11, 2012 @ 14:41:35
Thank you so much for your comment Marlene. I love dissent, but I’m not sure what it is we disagree on! I have spoken out against the “pink movement” quite a bit, and agree that the awareness bs MUST come to an end, and NOW. Here’s an interview I did on that exact subject:
May 08, 2012 @ 15:12:43
An absolutely heartfelt “hear, hear” from this side of the Pond as well. After 12 years as a BC advocate now find myself reinventing the wheel on the metastatic front. Have derived massive support from the online community. Keep up the good work #fearlessfriends
May 09, 2012 @ 08:48:13
You are my Fearless friend! I love you.
May 12, 2012 @ 12:55:58
In a world where husbands walk away from their wives upon a breast cancer diagnosis (YES, it still happens!), I consider myself so very blessed to have such incredible friends like you! I love you right back…and we need a date for a drink!
May 09, 2012 @ 09:02:24
I work with an organization where I’ve had to shout to get them to get off the celebration train and ackowledge mets and I have not succeeded yet. I’ve lost many friends to mets. My own mother died of mets. I stand with you forever, dear #fearlessfriends.
May 12, 2012 @ 12:57:34
It is sometimes so an uphill battle, isn’t it? Here and there, I’ve found I’ve just needed to jump ship on an organization and seek ones with kindred spirits. I wonder what people would say if we asked, specifically, exactly what they think there is to celebrate….
May 09, 2012 @ 09:43:01
Thank you for so fearlessly yet neutrally writing about life on the margins with BCMets. Rachel Cheetham Moro often said, if we’re not addressing METS, we’re not addressing breast cancer. She was right. To be the “human guinea pigs, used to save the lives of others” while also being the ones who are memorialized to fuel the ongoing fight, you surely deserve a place at the table, not at a meet-up. METS is what kills. It’s just a fact, Not a competition or plea for undue attention. I’ll stand with you, and I’m not the only one. –Gayle Sulik
May 12, 2012 @ 13:00:18
How right you are, Gayle! And I’m fairly good at pulling up a chair at the table when I need to. The tides are shift, albeit more slowly than I would like. I just keep reminding people I’m running out of time!!
In other news, Alan Rosenblatt ROCKED at this year’s NBCC Social Media workshop, but YOU were sorely missed!!
May 13, 2012 @ 07:41:39
Thanks, Lori. Would love to have met up with you all. Too many irons in the fire for me at the moment… Glad to hear Alan Rosenblatt rocked it!!
May 10, 2012 @ 16:39:36
You already know how much I love this post! I think I gave you a **real** hug after I read it on YOUR iPad, right after it was typed. You’ll never be alone. None of you. Ever. #FearlessFriends…. We’ve created a movement. And it will continue to grow until the METS patients are Priority Number One. Anything less than that is simply unacceptable.
I.LOVE.YOU…… and I miss you, too!!!
xoxox
AnneMarie
May 11, 2012 @ 14:38:33
Oh I’ll hunt you down before I’ll ever be alone, and you know it! I love you, my #fearlessfriend.
May 14, 2012 @ 15:46:06
You amaze and inspire me. Don’t need your passionate, articulate blogs to do that – but, it does add another layer to you, your impact on the world, our friendship. I will be here, no matter the diagnosis, prognosis, fear, sadness – and, look forward to joy, tears and laughter for years to come. I am here for you – and your men (including Jefferson!) – Jeff is, too. You should know that – even if we don’t talk every day. But, in case you don’t – you do now, and so does anyone else who reads this :-). I like this #fearlessfriends movement. Luv u….
May 14, 2012 @ 20:35:34
Oh Mar, I love you too! We don’t need to talk every day, or even every month, for me to know that you are both there is we ever need anything…and I trust the same is true! Now, when are we getting together??? Love you!!
May 17, 2012 @ 12:33:18
I support you and it was wonderful seeing you at NBCC! Keep it up spreading the word.
May 17, 2012 @ 13:55:12
Thank you, Murray! It was great meeting you too…along with so many other #bcsm-ers. Please send my best to your mom!!
May 18, 2012 @ 19:30:22
Just wanted to give you a heads up re the Metastatic Breast Cancer Network’s (www.mbcn.org) annual conference. It will be held in October on National Metastatic Breast Cancer Awareness Day, in Chicago. More details, including registration links, will be available soon.
You can sign up for the MBCN newsletter at http://www.mbcn.org or follow its Facebook page.
May 18, 2012 @ 20:24:03
Thanks SO much for sharing this info, Katherine! Wish I could be there, but hopefully anyone interested will go to the MBCN website or contact you directly via your blog at ihatebreastcancer.wordpress.com.