Beating a Dead Horse

For most of us the days of being told how to live our cancer journey fell away when our treatments were over. Gone are the frustrating moments when well-meaning friends and strangers at Starbucks offer remedies, alternative therapies, and all manner of unsolicited advice.

But when you have mets, those opportunities keep on giving, until – well, until the treatment ends, and we all know when that is. Never.

So you can imagine my frustration by the wave of Good Samaritans, breast cancer survivors all, who seem to think that because they once had early stage breast cancer they are in a position to advise me about mine.

It’s not about treatment, thankfully, but it is about what is happening in the political world of breast cancer and it’s just as infuriating. I have a feeling we’re at a turning point among breast cancer organizations. Komen is still fighting it’s way back, NBCC is shifting it’s agenda. In my email box old accusations about ACS are being rehashed. And more and more of us are asking hard questions and demanding authentic answers. We are tired of the wool being pulled over our eyes. As we, advocates, become increasingly educated, as more and more money gets washed away in administrative overhead, as we continue to die, we are questioning – loudly – what is happening to the organizations who seek to or claim to speak for the plurality of the breast cancer community.

It’s interesting, because when I spoke out again Komen I was perceived as a well-informed, eye-wide-open, questioning sort of advocate. But now my questions are hitting closer to home – I’m asking for answers from the very organization that trained me to ask the questions. And those same people who supported me, vocally and visably, when it was Komen are now insisting that I don’t understand what is going on inside NBCC.

I readily admit that I have no inside track at NBCC. Nor did I at Komen. I hear the language they use, specifically about mets, and I ask questions. If I get answers at all, they are vague.

Do you have a mets agenda?

          We have said clearly that we want to prevent mets.

How does that help those of us who have mets?

          There’s only so much money to go around.

I get it. No one organization can do everything. I admire NBCC for all the training it provides advocates, for the platform that it has successfully (impressively) built, and for it’s commitment to a breast cancer vaccine.

Now, PLEASE stop telling me it’s a mets agenda. Invoking cell dormancy? Great – but we are SO remarkably far from having the knowledge we need for that to be a viable therapy that I can assure you I will be long dead before it arrives. But more importantly, SHOW ME THE MONEY. I have said many times on this blog, if you want to know what an organization’s priorities are, look at their budget, not their press releases. How much money is NBCC investing in metastatic cancer research. Real dollars. If THAT is a meaningful portion of the NBCC budget I will quickly, eagerly, enthusiastically eat my words and jump on the band wagon. If it isn’t, everyone who’s trying to teach me has simply had a hefty dose of NBCC’s pink Kool-Aid.

And until that information is publicly available, it is only polite to stop telling the metastatic breast cancer patients that you know best what we need and how to get there. Do not tell me I should be grateful that my disease might be seen as “chronic.” First, because it will only be “chronic” for a period of time, and second because you’ are not the one up at 3:00 AM wondering what your cells are doing, you’re not the one schelping to the doctor for treatment or managing the side effects.

For the love of God, if you are not a metastatic breast cancer patient please stop telling me how to be one! If you want to be in dialogue then you need to listen to me as well. You need to hear the voices of metastatic patients, not just the sales pitch from organizations that are looking for your money and your volunteer hours. I respect your choices in where you want to be a, who want to be involved with, but it’s time to respect mine is well.

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20 Comments (+add yours?)

  1. Elaine
    May 20, 2013 @ 10:42:01

    Hi Lori,
    I hope I’l never hear anyone but my doctor or maybe, a close relative, telling me, unsolicited, what to do about my health.

    But the other matter – about a “mets agenda” is less clear; it could be that both Komen and NBCC are doing more work (research) that might help prevent mets and women who already have advanced disease than do most other charities (w/ few exceptions). Cell dormancy is a big deal in how many scientists (and I, for what it’s worth) think that cancer hides and recurs…

    The problem is that the pace of research is too slow, much of it is silo’d, or done in parallel and not so well; it’s hard for anyone (scientists or patients or physicians) to anticipate what’ll pan out, so there’s a lot and it costs too much. Dollars are limited, as you point out..

    Hope you’re doing OK.

    Reply

    • Lori
      May 20, 2013 @ 10:55:11

      As usual, you make an excellent point, Elaine! And I am NOT saying cell dormancy isn’t a key to this; it could very well be. My issue is the money. There are a whole host of people who are applauding NBCC’s commitment to the mets community, trying to convince us that it has changed. Before I believe there is a new agenda, I need to see that there is money. Otherwise it is, at best, all talk, and at worst, smoke and mirrors.

      Reply

      • Elaine
        May 20, 2013 @ 11:30:28

        Thanks Laurie. Agree, there’s too much talk, too much argument, too little money (is that possible?) and not enough meaningful action/progress –

  2. bethgainer
    May 20, 2013 @ 12:35:07

    Lori, this is an excellent post. Powerful, especially “For the love of God, if you are not a metastatic breast cancer patient please stop telling me how to be one! If you want to be in dialogue then you need to listen to me as well.” I think it is horrible for any breast cancer patient, former or otherwise, to tell another how to be a cancer patient. It smacks of arrogance. And I agree that looking at a company’s budget is key to knowing whether to donate to them. Too little is going into research and too little is going into metastatic research.

    Reply

    • Karen Rinehart
      May 20, 2013 @ 15:06:12

      well said, bethgainer! In my upcoming How-To guidebook, I’m including a LONG list of What NOT To Say To Someone With (Breast) Cancer. “Try Chinese herbs!”
      “Oh you have breast cancer? My Aunt died from that!”
      “It’s only hair!”
      “You’re so brave!”
      “You need to relax. Try meditation.”

      If you all want to share, CC and I would so absolutely love it! You can comment on http://www.sickofpink.com or email me directly at karen@karenjrinehart.com

      Reply

    • Lori
      May 20, 2013 @ 17:00:06

      Thanks, Beth…you know I agree. There is so much involved with this, but in the end, it is always about ensuring our voices are heard.

      Reply

  3. Susan
    May 20, 2013 @ 14:20:46

    Lori, I agree with you that someone who does not have mets has no right to even touch how you feel or the right to speak for you when they are not in your shoes. What you have written is very powerful and I understand your point of view. I respect your thoughts and feelings and absolutely no one has the right to tell you how to be a metastatic breast cancer patient.

    Reply

    • Lori
      May 20, 2013 @ 16:59:02

      I know exactly how you feel Susan, and I appreciate your comments! I just find it interesting that the “finished treatment” community – and this isn’t about you or NBCC, but a generalization – keeps telling mets patients what our agenda should be.

      Reply

  4. Vicki Tashman
    May 20, 2013 @ 16:01:05

    Hi Lori, I respect your opinion and which organizations you want to support. I told you about the tumor dormancy and, in the future, if it’s something you just don’t want to hear about, please tell me to stop. I certainly don’t know what you’re thinking and feeling and don’t pretend to know. I was great seeing you the other day and hope to see you soon.

    Reply

    • Lori
      May 20, 2013 @ 16:57:37

      Hi Vicki,

      It was NOT about our conversation. There have been about a half dozen conversations with people who keep pressing me to trust NBCC. My frustration, as I’ve shared, is that there are never any direct answers to direct questions. I am looking forward, with guarded optimism, to reading what Musa plans to forward to you. But until I see a change in the status quo, NBCC sadly isn’t about me any longer…

      Hope to see you on chat tonight!!

      Reply

  5. DrAttai
    May 20, 2013 @ 19:51:33

    Excellent, valid and well-argued points. As always.

    Reply

  6. Cancer Curmudgeon
    May 20, 2013 @ 20:45:15

    I’m starting to become disenchanted with all organizations; the majority of emails I get from them ask for money I don’t have.
    Maybe no one person/group can speak for all BC patients, but you did hit on a universal fear or truth, the wondering about cells: It’s 3 AM, do you know what your cells are doing?

    Reply

  7. Scorchy
    May 22, 2013 @ 18:51:26

    Balls! You’ve either got a mets agenda or you don’t. As soon as you start parsing you’re essentially admitting that no you don’t have a mets agenda. People who spin for a living know that if you change the language you can deflect–and “chronic” is the buzzword. Honestly, metastatic disease has always been chronic. There is nothing new here. Throw me a bone!

    Reply

  8. Karen Sutherland
    May 25, 2013 @ 20:38:29

    dear lori,

    i don’t have it together enough to be able to speak to agendas in detail – but i’m pretty sure both you and scorchy hit the nail on the head. spinning and deflection and show me the m-o-n-e-y.
    i just want to let you know that what you wrote is so powerful and passionate and that i agree that mets as chronic is simply not good enough. hugh’s multiple myeloma was in the same chronic boat, and even the most dedicated and vociferous advocates have a really hard time rallying outrage and support for more. maybe because MM is a very rare cancer; but the numbers of young men and women, with more aggressive disease is skyrocketing. i know big pharma jumping on the bandwagon for new and improved – yeah, i hate that buzzphrase – drugs to support the chronic side of that horrible disease probably just makes people grateful that SOMETHING is coming down the pike. it’s not good enough – it will NEVER be good enough. so i get the outrage you feel about having people foist their agendas on you. you’ve done an excellent job with this post, lori. thank you.

    Reply

  9. NotDownOrOut
    Jul 04, 2013 @ 07:55:52

    Lori, you haven’t posted in awhile. I hope you are okay. Cheryl

    Reply

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