From awareness to action, from ribbons to research

It’s time, I think, to move from awareness to action, from ribbons to research, and to share what we’re learning with the rest of the world.  The #cancerrebels and pink protesters I’ve linked to in the past and new blogs I find every day are standing up for what we believe in, and I’d like to ask you to stand with us.

I’ve heard you asking why the research allocations are so off (30% of breast cancer cases progress to metastatic breast cancer, which only receives 3% of the research funds in the U.S.), and how we let it get this way.  No one knows for sure, of course, but I’m convinced that a big part of it is that it’s easy to overlook metastatic breast cancer survivors.

Even the name is a misnomer.  No one actually survives metastatic breast cancer.  Every single one of us with metastatic breast cancer will die of metastatic breast cancer, unless we’re hit by a car (or some other such accident) on the way to chemo (for example).  Many of us are not as active as we used to be; we suffer from pain, aches, nausea and fatigue, and we spend our “free time” at treatment or sleeping it off.  We prioritize our time with friends, but still we may retreat from social situations since we tire easily and unpredictably.  We spend our time with our families, squeezing out one more good memory, one more moment of happiness with our children, our spouse, our partner.  Many of us are additionally exhausted from treatment combined with work, by choice or by necessity, especially for the large number of us who must work to maintain access to our health insurance, a terrible twist for those without partners with health insurance or another solution.  Many are also caregivers for parents, teens, or very young children, and the time for advocacy slips through our fingers.

But most of all, the metastatic cancer movement has been stimeyed by the truth:  most patients diagnosed first with metastatic breast cancer die within 3 years, a number that has not changed in the last 20 years.  The 30% who have another cancer first that progresses to metastatic cancer may live longer (or shorter), but they are weary from the fight, and many have not felt welcome in the “pink” communities that shout HOPE from the rooftops.

Hope is lovely, of course, but in breast cancer circles, hope seems to mean hope for a cure (which is not likely to come for metastatic patients without more research) or hope that the cancer does not return — making the individual then a patient with metastatic breast cancer — this disease that has no cure and is always fatal.

It is hard to volunteer tirelessly for an organization that preaches HOPE that its members not become like you.

But today I want to introduce to you 1) the National Breast Cancer Coalition, the organization of organizations that helped teach the #cancerrebels these facts earlier this year, 2) Metastatic Breast Cancer Network, which is holding its FREE  annual meeting on “Empowerment through Education” TOMORROW in Baltimore (it may not be too late to attend!), and 3) METAvivors, a grass-roots group that has formed around the need for ACTION.  Now.

The METAvivors are a group of women from Annapolis working to create change, to increase not just awareness but research.  The group helps groups across the U.S. form their own local support groups for metastatic breast cancer survivors, spreads awareness of facts such as the ones I discussed above, and has recently formed their own nonprofit foundation to support a level of research commensurate with the number of patients that are diagnosed each year with metastatic breast cancer.  Starting in 2010, the METAvivors now fund promising metastatic research grants out of donations alone.  They are staffed by volunteers and support designation of donations for research — include that word on your check or with your donation and 100% of the funds received will be distributed to the competitively selected research grants.

On October 11, announced their 30% for 30% campaign to ensure that research and support for metastatic breast cancer are commensurate with the prevalence of disease.  I’m eagerly awaiting new details, but this is an organization I can really get behind.


37 Responses to From awareness to action, from ribbons to research

  1. justenjoyhim says:

    Love this. Love you. You rock.

    • Right back at’cha, Judy. I love the series you’ve been doing at Mothers With Cancer during October!

      In fact, I encourage everyone to check out her series on breast cancer charities at MothersWithCancer dot com!

  2. Thank you, Susan. Your statement that “It is hard to volunteer tirelessly for an organization that preaches HOPE that its members not become like you.” is heart-wrenching. Clearly, there are limitations to hope when it is used as a “smoke and mirrors” for meaningful action. METAvivor is providing a new model for action that I ‘hope’ many people will get behind.

  3. […] bandit here, a bandit there. People with and without metastasis have started to raise awareness about the breast cancer industry, and Komen’s role in it, by posing hard questions, taking […]

    • This link goes to an incredible post that, among other things, tells the story of a woman with a double mastectomy who ran for the cure shirtless – and exactly who told her to cover up. Read it and learn.

      Gayle Sulnik of Pink Ribbon Blues is an incredible writer who digs deep to find the story behind the story.

  4. This is so important. I think we need to hear that what do we do post “awareness” more often and I am glad you are speaking to it. As we hear in advanced or aggressive breast cancer circles, that the “pink ribbon” campaigns don’t fit so many of us, stage iv’s or people like me, (and you) IBCer, Inflammatory Breast Cancer patients, who can’t be dx any earlier that a stage III, that we need more funding to go to the advanced end of breast cancer. I will look into this group and do what I can to support and I will continue to do what I can to fund research for IBC as well,

    Thank you,
    Terry Arnold
    IBC chick, NED since 2007
    The IBC Network Foundation

    • And thank you, Terry, for the plans for your new IBC foundation to fund research grants.

      • Susan, it was your writings when I was first dx with IBC that helped me see what I needed to do. I was so inspired to do more for women with advanced cancer and not just join in the pink parades, so thank you!

        • Really? I had no idea, Terry! I am flattered and re-inspired to keep writing, to keep fighting.

          I had a terrible, terrible weekend, pain-wise, but hearing words like this while I snuggle with my little ones helps keep me going.

  5. METAviviors. You know, the two women I love most in this world are both amazingly brave and strong METAvivors.

  6. […] From awareness to action, from ribbons to research « Toddler Planet says: October 28, 2011 at 9:42 am […]

  7. 30 percent metastasize and most die in three years? Wow, I had not heard that until you last posted these stats. I keep hearing catch at early stage and up to 98 percent cure and even stage 3 a fair chance. Guess the numbers are misleading. We do need to be reminded that cancer treatments are not progressing nearly as fast as we have been led to believe in most cases. Keep on fighting girl – for yourself, your family and the rest of us. And I hope you have a comfy, happy weekend! 🙂


    • Be careful not to put those two facts together. 30% of all breast cancer patients/survivors will go on to develop metastasis. But many of these will live longer than those diagnosed at Stage IV, or, metastatic, right away – their median survival rate hovers around three years. Those two stats refer to two different groups of people.

    • The numbers on early detection are interesting. Komen’s October ad says that when caught early (diagnosis Stage I and possibly II), survival rate from breast cancer is 98%. But those that are not caught early (Stage IV and possibly III) the survival rate is 23%. I saw that ad, and pulled it out because the numbers were in small type with the headline screaming “What’s key to surviving breast cancer?” and then in big bold type against a pink background: “You.”.

      Fine and dandy except for those unfortunate souls diagnosed at later stages (like IBC’ers, where the disease is by definition diagnosed at Stage III or IV, since it forms in the lymph vessels and without a lump), and like those who had no reason to believe that they were at risk, and who fall outside the recommended screening guidelines.

      Yes, early detection is critical, since the cure rates are so high for early stage breast cancer, but the tone of the ad confused me. Since my cancer wasn’t even able to be detected early, did I fail in some way?

      If my actions are key to surviving breast cancer, but my cancer wasn’t detected early, am I too late?

      The way those statements are presented in the ad confused me.

  8. Marty, “MetAvivors”: never heard that one. I like it. Like I’ve said before, I believe we are all survivors through every breath we take. And those who die from the cancer are no less so than those lucky enough to eventually go from something else. Keep on ladies. You are strong and passionate.


  9. These organizations being created or making changes is great news and I can’t wait to check out METAvivors. Thanks Susan.

    • Thank you for caring, and for heckling them out.

      Women with metastatic breast cancer can’t do this alone. We need cheerleaders, donors, and allies in the fight, the fight for more research so that those diagnosed in the future will have a chance to beat it.

  10. Karen says:

    Susan, First, thank you, again, for continuing to educate and advise on this very important topic.

    Secondly, RE your comment / question ‘Yes, early detection is critical, since the cure rates are so high for early stage breast cancer, …. Since my cancer wasn’t even able to be detected early, did I fail in some way?’

    You absolutely did not fail. I hope your question / comment is more abstract or philosophical (sp)?

    I realize that many people visit your site; however you might recognize that I’ve commented before and therefor know that a close friend of mine has Stage IV IBC.
    In any event, thank you yet again for your insights.
    Karen G

    • Yes, Karen, I know you from your comments here. I know your twitter and I remember your friend. I’m sorry I don’t respond to every comment here. I should – but I haven’t, because I’ve been so tired and am having trouble getting a handle on my pain again. Forgive me?

      I always love to see your smiling avatar here!


      • Karen G says:

        Susan, absolutely no need to apologize! I’m amazed you take time to reply given everything on your plate, both the very challenging and the very very positive – your family, friends, and fascinating career.

        So, I’ll keep reading, and no reply necessary!

  11. Amanda says:

    I will keep pressing forward. I will tweet, share, and protect your flame of activism.


  12. This means so much to me. I need all the help I can get.

  13. The statistic that 3% of research funds goes to metastatic cancer that accounts for 30% of cancers is astonishing. Just a simple statistical comparison like that is so much more powerful and sobering than endless speeches. It’s a scientific fact that can’t be ignored. 30% for 30%. It’s concrete, incontrovertible, scientific like you and not at all vague like the color pink. Let’s have some respect for women’s intelligence and the passion numbers can raise.

  14. Bon says:

    i’m in. this info about metastasis is one kind of awareness i really DID need…thanks, as ever, for teaching, sharing, enabling.

  15. I cheer for you Susan! Soothing Energy Vibes are being sent your way. Passing the MBC word along as you has helped to educate me/us and showing us how to get involved (MBCM, MetaVivor).
    This is a (Sh**^y) issue that affects all of us and most of us did not even know or understand that it did. Rest when you feel like it……..educate us when you feel like it. Warm Vibes………

  16. Marsi White says:

    I just linked to your blog post in my lastest post: Your post is such an awesome post. Thank you for writing it.

  17. Hi all,

    Did you see this on new research supposedly a possible breakthrough in figuring out mets? It was on Twitter.

  18. Sue Fisher says:

    Susan, you continue to inspire me with every word you write.

  19. Wendy says:

    Thank you so much for introducing these organizations!

  20. Susan:
    first time reading your blog for me and I agree completely. More money for research for stage IV, BUT let’s not forget that awareness of metastatic disease is not shared by the general population or even the rest of the breast cancer community. We may be tired of “awareness” but we need to get the message out about MBC and change the conversation about breast cancer. We still have a long way to go and need to redirect all the enthusiasm and money going to pink ribbons to include us! As a member of MBCN, this is exactly the campaign we are waging.

  21. […] Toddler Planet Posted in cause, diagnosis, paget's disease, treatment, Uncategorized | Tags: cancer, cause, […]

  22. […] of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We […]

  23. […] of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We […]

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