Research on Metastatic Breast Cancer: “Trying to Stay Alive on Two Percent”

After spending 24 years as an Air Force Intelligence Officer, “CJ” (Dian) Corneliussen-James, retired as a Lieutenant Colonel and took a Senior Analyst position in the Defense of Defense. Slowed down by the diagnoses of both metastatic breast cancer and systemic lupus in 2006, she retired from the government but was soon busy running a support program for metastatic breast cancer. Her quest to fund much needed research for the disease led to the establishment of a 501(c)(3) non-profit organization, METAvivor Research and Support Inc., of which she is President. CJ writes:

“My interest in the allocation of cancer research funds began January 13, 2007 … the day I learned that only 1% of the $5 billion annual cancer fund was devoted to any stage IV cancer, despite the fact that stage IV causes 90% of cancer deaths. I had just been diagnosed with metastatic (stage IV) breast cancer, or ‘BC mets’ as we tend to call it, so the statement really hit home. The stage IV research fund allocation is now considered closer to 2%, but that is still minuscule and breast cancer is a subset of that. One might think breast cancer organizations would look after their own stage IV community. They do not.”

Read more about CJ and the dearth of research on BC mets on The Cancer Culture Chronicles.

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7 comments to Research on Metastatic Breast Cancer: “Trying to Stay Alive on Two Percent”

  • suegeorge

    I thank you for bringing this %2 allocation of cancer research funds for stage 4 cancers. I’m a nine year bc mets person and need to eliminate survivor from my vocabulary. I feel robbed. I have been blessed with a body holding unto hormonal therapies but what’s in my future?

    How can I help? Sue

  • Thank you, Sue. For ideas, please contact /METAvivor.

  • Sue, There is also a discussion board on BreastCancer.org you might find helpful.

  • Sue, thank you for your support. You’ll find our contact information posted on our website (www.metavivor.org). Would love to hear from you. METAvivor can use all the support it can get.
    CJ (Dian) Corneliussen-James

  • MARIE CARLIN

    I am a survivor 11 years stage IV and have had to switch therapies 3 times when they quit working. I do not know how many more there are out there. The docs have told me that I will be on my current regiem until my kidneys can no longer take it. I get very frustrated because so many of the dollars go for funding activities such as the American Cancer Society Look Good Feel Good support. It is fine to look good and feel good but I would rather be alive.

  • Thank you for sharing this, Marie. The funding allocations clearly have to change. Keep speaking out, and check in with CJ about her work with METAvivor.

  • Thank you CJ for your excellent advocacy for all of us living with metastatic breast cancer. YES… we need research focused on metastases…. if our mets could be stable.. under control… we could all live – and then the huge fear of bc wouldn’t be and mbc would become a TRULY chronic condition. None of this will ever happen on 2%. How do we change this?

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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* GAYLE IN THE MEDIA *

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3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

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Time to Debunk the Mammography Myth CNN

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The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

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