Metastatic Breast Cancer

[Updated on September 21, 2012]

When any of us is first diagnosed with breast cancer, one of our first visceral reactions is fear. And there is a good reason for that. Close to a third of those of us who are diagnosed with invasive breast cancer will develop mets. Even for those of us diagnosed with DCIS, non-invasive breast cancer, up to 10% will develop invasive breast cancer, and that 10% will then be at a 30% risk for developing mets. And yet, a miniscule percentage of research funds goes to finding effective treatment, prevention and cures for metastatic breast cancer.

Meanwhile, even though our universal gut reaction to breast cancer may acknowledge its deadliness, public perceptions about breast cancer do not reflect reality. Too many myths continue to be espoused, including, in my opinion, the move in some medical circles to start referring to patient care for mets as ‘chronic disease management.’ Some of these myths are as follows, from the website METAvivor.org:

  • Myth: Research funding is well balanced for all stages of cancer.
    Reality: 90% of cancer deaths result from stage IV cancer, but only 2% of research funds are devoted to stage IV.
  • Myth: Metastatic breast cancer is rare.
    Reality: 30% of breast cancer patients progress to stage IV. Many more initially present with metastatic breast cancer.
  • Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
    Reality: Metastasis happens despite vigilance and precautions. Even stage I patients can and do metastasize.
  • Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
    Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.
  • Myth: Stage IV breast cancer patients are well supported by many groups.
    Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to stage IV.

Here is a link to an article by Dian M. Corneliussen-James, known as ‘CJ,’ who founded METAvivor.org, making the case for changing the breast cancer conversation — and the funding for treatment and research — to reflect these realities. 30 Percent for 30 Percent.

Becoming A Fearless Friend

Friend and author Gayle Sulik asked me recently to put the hashtag #occupythecure on a teeshirt. We were both still reeling from the death of our beloved friend and sister blogger Rachel Cheetham Moro, as were many of our sisters in the blogosphere. I was musing on this phrase in visual terms, as I often do, and designed the image on the right. The women pictured in it — beautiful and smiling in life — all died of metastatic breast cancer. Starting in the upper left and going clockwise, they are: Susan G. Komen; journalist Molly Ivins; blogger and astrophysicist Susan Neibur; poet, writer and activist Audre Lorde; dear friend and sister ‘bitchblogger’ Rachel Cheetham Moro. Pink ribbons did not save them. Death overshadowed and overpowered them in the end. They represent for us all the ultimate cost of breast cancer.

I have felt personally aggrieved by the loss of each one of them. Susan Komen’s sister, Nancy Brinker, has yet to steer the organization she founded in a direction that acknowledges the reality of her sister’s diagnosis and death in her thirties. That famous ‘promise’ she made to her continues to be broken, in my opinion. Until Komen, along with many other fundraising organizations, stops publicly expounding the myth that screening mammograms constitute ‘prevention,’ until they ensure that 30% of their funds are spent directly on helping women and men with metastatic breast cancer, and on research to stop it, their mission is meaningless. As for the other women pictured, I met three of them personally — Rach, Susan and Audre Lorde. Molly Ivins is one of my personal heroes as a writer, my Goddess of Snark.

And so, I’m beginning a long-overdue page on this blog for those with mets. And it has its own tab, under ‘Mets,’ at the top of my home page. At the same time, I have also offered C.J. my geekitude and have started a blog for METAvivor.org. You can find it at The METAvivor Blog. There are many mets-specific links and resources there, as well as personal stories shared by women of all ages who live with metastatic breast cancer.

In addition, there is information available about all aspects of cancer at the Info/Resources tab above. And do click on the Category link for Metastatic Cancer on the sidebar for posts I have written on the subject.

And please feel free to make suggestions.

Some blog sisters with mets:

Then there are the wonderful blogs written by a few of the sisters we have lost to MBC; a few examples:

Those of us who do not have mets cannot feel safe or comfortable with the status quo. That 30% has included too many of our friends, and it could end up including us. In the meantime, we need to step up to our sisters and brothers with mets and be ‘fearless friends.’


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9 Responses to “Metastatic Breast Cancer”

  1. what a passionate post and a great set of resources. thanks kathi.

  2. Thanks, CB. I really owed it to Rach, and then to CJ, for inviting me to get involved and help in my geeky fashion. xoxo

  3. This is so wonderful. You are wonderful! Thank you, Kathi.

  4. This is SUCH an important post! Thanks Kathi….. I want to include the picture of that ribbon in response to the message left on my blog…..

    Here’s another good bit of info from Science Daily on March 28th….. it’s about a new protein marker test….. note the quote is 20% recurrence within TEN YEARS. So much for the magic five yr anniversary…..

    “Daniel Raftery, Ph.D., who reported on the test, pointed out that breast cancer survivors —
    2.5 million in the U.S. alone — face about a 1-in-5 chance that the cancer will come back, or recur, within 10 years of treatment.”

    xoxox

  5. Kathi,

    Thank you for this powerful and important post. You took a lot of information and made it easy to understand. What a wonderful Fearless Friend post!

    Warmly,
    Ann

  6. THANK YOU for such a needed post! We cannot be complacent. Your tribute to these wonderful women who succumbed to mets really speaks volumes.

  7. Thanks for taking on this issue, Kathi. I’d like to add another blog, from my friend Ashley who died of Inflammatory Breast Cancer this past summer. She was 41.

    http://ashleyowarriormom.wordpress.com/

    Katie

  8. What an excellent post. I will be stealing your message, 30% for the 30% of us. The ONLY people who are going to die of breast cancer are people like me, with mets. And, no money flows to us, and no help.

    (By the way, my last name is spelled with a “b” but no worries, I just appreciate the mention)

    I need to update my blogroll to catch some of these woman that I wasn’t aware of.

  9. Thanks, Ann. Will correct my typo right now. And I thank CJ for the 30 for 30 message.

    Thanks, everyone, for your kind words. Katie, thanks for the suggestion on the blog.

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