Shirley’s Update on the Komen Roundtable on Metastatic Breast Cancer

It seems like a very long time ago (prior to the Komen-Planned Parenthood controversy), but late in January, I had the pleasure of meeting nine other metastatic breast cancer patients from across the United States during a meeting at the Komen headquarters in Dallas, Texas.  Our common goal was to share with the staff of Komen the concerns and needs of metastatic breast cancer patients whom we had met along our journey.  Among us were newly diagnosed metastatic patients and others who have been living with the disease for some time.

Over a day and a half, we shared with the attentive Komen staff present in the room what it was like to live with metastatic breast cancer and what, we perceived, were the unmet needs of patients. The conversation was very frank and revealing.  We discussed how metastatic patients relate to the word “survivor;” the pink ribbon; and the awareness activities that go on each year in October.  Our full experiences were shared—including the great need for more research to find new treatments to extend life, the disparities in access to quality health care, the costs of ongoing treatments, the need for good information to make treatment decisions, and the need for appropriate support groups to help us deal with psychosocial issues.

Though there was no specific action plan formalized at the end of the meeting, I feel confident that the Komen leadership will review and discuss what was shared.  I am hopeful a plan to address the unmet needs of metastatic breast cancer patients will be developed in the future. More updates to come…

In the meantime, I made nine new friends who are amazing!

All best wishes,

Shirley

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9 Responses to Shirley’s Update on the Komen Roundtable on Metastatic Breast Cancer

  1. Chris says:

    I applaud you in your restraint in your meeting with the Komen group! They certainly do not seem to consider that this disease isn’t a matter of survivor or not. Right now, it is a ravaging disease that has no cure. Disaster can strike at any time, as it did in my case. As long as there is no cure, everyone who has had or even if they haven’t yet, is at risk. I hope that we, as metastatic BC patients can rally more support for research and trials, to not only prolong life, but to work on figuring out the root problem. Also, pragmatic access to studies, like the vaccine study or the DNA mutation targeted therapies, are not clearly available. I don’t know how many times I read Newsweek or some other journal talking about them or something else that looks promising. What the article doesn’t say is; what can a metastatic patient do to be signed up for the study? The way my disease is going, that may be my only hope. I was diagnosed in 2009 and I have 3 children and an art career. It seems to me that will be over soon.
    Thank you,
    Chris

  2. Michele Lowe says:

    I am interested to know the ages as well as the year of diagnosis of the women who represented at the Komen round table. Specifically, was there anyone there who is under the age of 40 when diagnosed.

  3. mary w. says:

    Echoing Chris’s remark, I find your note exceedingly restrained; corporate in nature; failing to address the crisis of care and concern for patients who are metastatic. Having these nice “chats” with Komen will not go far – I’m pretty sure of that. With only about 17-19% of their funds going to research, while the dame at the head of the organization insists on being called “Ambassador” (she ended her ternm in 2003) just doesn’t make a match. I support MBCN and all of its fine work. Unfortunately I cannot say the same for Komen.

  4. MBCNbuzz says:

    Shirley will respond in more detail, but before too much time passes, I just want to say that we wholeheartedly agree with your comments. As part of the meeting agreement, Shirley is not able to disclose details or specific action items discussed.

    No one feels the slight and pain of being the underserved and forgotten population of metastatic patients than we do. We are an organization of all volunteers with Stage IV disease. I guess what we want to emphasize here is that this meeting was the first chink in the Komen pink wall–certainly a modest beginning, we agree.

    But, we are hoping (perhaps, naively) that this will help to change the Komen message. And the spotlight on Komen lack of research funding following the Planned Parenthood controversy can only help.

    Thank you for your comments. We appreciate them.
    Ginny

  5. Interesting that Shirley can’t even discuss the meeting in detail. That tells a lot, doesn’t it? The fact that nothing was assigned “to do” specifically (that we know of is another tell-tale sign)….and nine patients? I would have liked to have heard a small auditorium was filled.

    Wait and see is an optimistic strategy; but I’m pretty sure few are holding their breath:)
    jms

  6. Shirley, I commend you for taking these concerns directly to Komen. But while I hope for the best, I don’t expect much from them. Komen was allegedly founded to keep a promise to a young woman who died of metastatic breast cancer. They even named themselves after her. And yet they still need to be enlightened about the reality of mbc?? I’m not holding my breath either. But I’m not going to shut up.

  7. I think it’s just plain sad (not to mention wrong!) that an organization that exists to educate, raise awareness, “find a cure” and assist those living with breast cancer needs to be enlightened about metastatic breast cancer. Something is seriously wrong with this picture. If they don’t understand or have a plan of action to address this segment of the breast cancer community, in my opinion, they are not a breast cancer advocacy charity at all and have seriously failed in their mission. It’s time for a change, way past time.

  8. ginny says:

    I certainly agree with you all that it’s time for change and that Komen for the “Cure” has failed in their research mission. We’re not naive and certainly aren’t holding our breath, as you say.

    However, we do believe that you have to be at the table to be part of the discussion. This may be too small a crack in the Komen pink wall to make any difference, but Komen is undergoing substantial change now because of the Planned Parenthood controversy and the spector of decreased fundraising. We’re not afraid to explore every avenue in the name of metastatic breast cancer patients.

    Thanks for fighting the good fight! We value your voices raised, loud and strong.

    Sincerely,
    Ginny
    MBCN

  9. alamik says:

    I agree with everyone of you. But did you all know that Komen is a sponsor of the MBCN and of the conferences? The proof is right on these pages. Go to the home page and look under the “about us” and then click on sponsors. You will see Komen listed as a sponsor. Also look at the highlights of the past conferences. If you click on the sponsors, you will see that Komen sponsored the conferences in 2009 and 2010. I don’t understand how they are sponsoring this group….. a group that advocates for more funding, a group whose members speak out against the unfairness of Komen. And all along, Komen is sponsoring this group. Why?

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