An idea has been buzzing around in my head lately that I’m struggling with, and so I’m writing it out here because I think it needs discussion. I really want to hear your thoughts on this.During the civil rights movement of the middle of last century, there were two competing approaches. There was the Martin Luther King approach of integration and working with people of all races to improve the lives of black folks. And there was the Malcolm X school of thought that said that African-Americans needed to take their power and lift themselves up, that integrating would always mean subjugation in a white system, and so black systems needed to be created.
I’ve always been an MLK kind of activist, and have continued to be so in my cancer activism. I am grateful for the support of people with early stage cancer or no cancer at all who see that metastatic patients are getting the shaft in a cancer system that celebrates survivors and ignores the dying. I continue to believe that in activism, allies are essential. This idea bouncing around my head isn’t about excluding anyone from the movement to save the lives of patients with metastatic cancer.
But I’ve started to think that metastatic breast cancer can’t be incorporated into traditional breast cancer programs, that it needs its own system. Metastatic patients are just fundamentally different from early stage patients. We aren’t part of the pink party narrative, and we’re never going to be. Trying to integrate us into the existing work of groups like Komen or Warriors in Pink just doesn’t make sense, because that’s not who we are.
So maybe what we really need is a Malcolm X approach: we need the Komens of the world to create new programs for metastatic breast cancer, instead of trying to integrate us into their existing programs. Let the 3-Day be about pink feather boas and funny hats–let the early stagers celebrate their NED status–but ALSO put on major fundraising events that are appropriate to metastatic disease, where the funds go directly to metastatic research and metastatic support programs. Create a new system for us.
We’re starting to see this in other programs, like Pfizer’s Story Half Told, which isn’t pink at all, and in metastatic patient conferences like Living Beyond Breast Cancer’s Thriving Together Conference. I go to a mets-only support group, because my needs are fundamentally different than the needs of early stage patients. If LBBC can do it, why not Komen?
Imagine if Race for the Cure was transformed into something that is truly about cure. Take all the pink off of it–get rid of the dogs in bras and replace them with pictures of those we have lost, and those who we’ll lose too soon unless more research happens. Guarantee that every dollar raised by the race will go to metastatic research, not marketing or “awareness,” so participants know that what they’re doing is actually going to save lives. Imagine how much more money they’d raise.
And, imagine if we extended this paradigm to other areas of cancer. Imagine if NCI had a dedicated metastasis research program, with metastatic patient advocates and doctors specializing in metastatic cancer treatment and bench researchers focused on understanding metastasis. Instead of trying to incorporate metastatic cancers into the existing organ-of-origin structures of cancer research, give us our own programs.
Or, more radically, maybe what needs to happen is that we just ignore the existing breast cancer world entirely and start a new one. Maybe groups like MET UP and METAvivor and MBCN have the right idea: building new systems of research funding and lobbying, outside the pink world, across organs of origin. Maybe it’s just that I’m tired of trying to fit into legacy breast cancer organizations’ existing framework, because that framework doesn’t work for us, and it never will, and I’m not seeing those frameworks changing dramatically in my lifetime. Maybe Komen is a lost cause.
Anyway, that’s what’s been bouncing around my head. Let me know what you think of all this in the comments!
Beth, I think it’s important that Stage 4 patients have their own safe place where they’re understood and supported. Even many of us early stagers hate the pink rah-rah, warrior shit, so I can only imagine how it would make you feel.
Some things can be changed from the inside, but when they can’t, it’s not worth the energy, especially when your energy is already compromised. I was glad when Komen added the “I am Susan” campaign, but I wonder if it was just to pacify metastatic patients. The bottom line is, where does the money go.
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I completely agreed with you 110% As a mother of young with MBC for the last seven months i have been doing alot of research and reading about MBC research and program, it seems like it is lacking. You practically have to start a non profit organization focus on MBC for mission for cure reseach.
Makes perfect sense! Still believe early stagers like me need to 100% support metastatic sisters.
For the added voice and for us to understand that 1 in 3 of us will be you. Your fight for research will be our fight, why wait to support.
Completely agree that large org’s, especially those spending huge money on lobbying, should recognize metastatic cancer as its own category needing its own funds and research.
Pink has ruined perception of breast cancer’s deadliness and has lined the pockets of big business.
It’s made the public perception horrifically skewed in many ways…about the disease, about the money, and about the reality of those who suffer.
It was done, it can be undone.
Thank you for this Beth. Thank you for the lives you save.
That was my thought process when I was early stage. Ok, my chances were 1/3 of becoming metastatic but let’s bump that up to 1/2 due to higher stage, aggressive subtype and being <30. So, why not start the education and advocacy process before this fucker has a chance to wallop me again? And if I never get mets it wouldn't have been wasted time because I made a difference for metsters. Win/win in the suckiest context ever.
In the end it actually made my mets Dx a lot easier to swallow and I hope I directed at least a few people to donating where the $$$ needs to go.
Beth, you are really onto something. I think having programs strictly for metastatic patients is a must. As an early stager, I resent that I’ve been put into the whole pink party narrative. Instead, I try to create and control my own narrative of what life is like from my perspective. We all have to control our own narratives.
I think your ideas are so on point. xoxo
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And to address one of your other points, I do think metastatic cancers should band together more. At my cancer center, brain mets trials are all run under neuro oncology. My last trial had arms not just for breast cancer brain mets but for several other kinds -melanoma was one and maybe also lung and kidney. Then thinking about hearing Dr Anders speak in Philly about the UNC brain tumor clinic – and I started thinking wouldn’t it be great if we could get the gliobstoma crowd and breast cancer brain mets crowd and the melanoma brain mets crowd and the lung cancer brain mets crowd together and figure out how to get around the damn blood brain barrier issue?
First off – when I was diagnosed early stage, I never wanted, “the pink narrative” to be my narrative. My first instinct was to put my head down, motor through my treatments and then never speak of this cancer business again. I remember tearfully telling then-BF/now-hubby the night I was diagnosed, “I will never be cancer girl…I will never let that become my identity.”
Well, then I started hearing phrases like “extensive lymph node invasion” and “high risk for metastatic recurrence” and I realized holy crap this could come back and kill me. And then breast cancer slowly did become my narrative – not the pretty pink narrative, but the narrative of a young women fighting against time, fighting against the odds, hoping that something would come out to prevent mets or prevent my death if mets did happen.
Now? My narrative changed surprisingly little as I made the jump from Stage III to IV. I think the biggest change has been much greater support from my family in terms of my advocacy efforts. No one is telling me to just get over cancer anymore.
I think you’re brilliant and there should be mets groups and mets focused research because across all types of cancers, those of us with mets have a lot more in common than do metsters and early stages – biologically, psychologically, and emotionally.
Beth, I agree with your Malcolm concept. Goodness, does anyone fit Komen? I don’t know if Komen is a lost cause but I no longer donate to them – Breast Cancer Action gets my dough now. However, even though women with mets are fundamentally different from early stagers, as an early stager with a higher than average risk not only of recurrence but of getting another kind of bc, I can tell you I despise the pink boas, dogs in bras, “Save the Ta-Tas” and want to hide for the month of October.
An entire economy has grown up around bc and I don’t see that changing any time soon. The treatments and drugs will be ghastly expensive because that is what the market will bear. The pharmaceutical companies have women over a barrel and they know it. Are prostate cancer treatments as expensive? I truly do not know.
We ALL need to push for more to be done on mets. Let’s not throw out your early stage sisters though – we can be a great ally.
Komen has newer marketing management that I haven’t met, I feel really out of the loop anymore. If you click on the “donate” button on the national site, you can select metastatic/stage IV as your designation for your donation. I have chatted with my local team about ways that the local money could help stage IV research and haven’t landed anywhere. I am not convinced it is a lost cause – and there are stage IV women who do like pink boas and sparkly bras believe it or not. I do think that we need to help push money into metastatic research through the METAvivors and MBCNs of the world. What they have right now isn’t enough, I don’t think I saw a single grant from METAVivor that had the potential of helping ME. I am somewhat selfish. I also think that we need to work backwards, look at what happens when we fund research – the drugs that eventually come out of it are still ridiculously expensive – so how to we fund research that generates solutions that aid people affordably? What is the process of the research funded by all of these grants into becoming something available to us today? When I spoke with the researcher at my hospital she couldn’t do a brain mets arm, because they simply didn’t have the funding to see that through to the end along with the standard arm to gather data that will help their immunology drug get to patients in the long run. Now I am just talking out loud, I’ll yap at you in person Sunday. <3
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Beth your thinking makes a lot of sense. While I try to take more of an MLK approach I recognize mets needs an in your face approach and clear ways to accomplish the needs of metastatic patients.
I was an early stager who did chemo, radiation, 8 surgeries, etc.I had a recurrence (not mets), I got a real taste of being shunned. People think recurrence is terminal and all my circle of early stagers had no interest in the details, except my best friend Li who did early stage treatment with me at the same time. Li got MBC TNBC recurrence in 2009 and died in 2012. Mets comes first and I just want to get people to get it. I think though by separating it at first- ultimately the climate will change and we all will save lives. Still though if others get it and support mets- we welcome especially caregivers and those who have lost their loved ones to this terrible disease.
I wholeheartedly agree with the Malcolm X approach. We don’t fit Komen and we never will. We need Metavivor to take over and be just as big. Tired of being the pariah.
I completely and totally agree. We are different. I remember trying to figure out if I was a “survivor” and what that meant. We just don’t fit in with whole pink thing and that’s ok. Great post.