4/23/11

Instead of Bracelets...

October is months away, and that is starting to look like a long time from now.  So I am going to address this issue now.  Don't worry - if I can, I'll be bugging you in October, too!

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Metastatic disease is the cause of over 90% of all breast cancer deaths, but accounts for less than 3% of the current studies on breast cancer treatment.  More than 30% of stage I-III breast cancer patients progress to metastatic disease (the stages of cancer refer to how far the cancer has spread, with stage I meaning that the cancer is in one spot, stage IV meaning that the cancer has spread to a location away from the original tumor and surrounding lymph tissue).  Many more are initially diagnosed at stage IV.  Over 40,000 people die of breast cancer every year.

Organizations such as Susan G. Komen rave on a lot about breast cancer awareness and survivorship, but awareness that metastatic breast cancer is still incurable and deadly is still dismally low.  At best, we are the invisible - when we are seen at all, we are seen as the monster under the bed.  At a recent meeting of metastatic patients, one gal admitted that when she went to the BC support meetings at stage 1, she had deliberately avoided the metastatic gals, feeling that somehow their disease might be caused by some contagious weakness. Most metastatic patients find this behavior to be the rule, rather than the exception. 

We also find that even among our families and friends, myths and misunderstandings about our disease prevail.  We find ourselves explaining again and again that we are never going to be able to stop treatment, get off the chemo, be cured. 

Until a cure is found.  And that event is nowhere in sight.

If we are going to find a cure for breast cancer, and an effective treatment for metastatic disease, we cannot depend on the Pink organizations, or on the standard research organizations (Big Pharma, etc).  We are going to have to resort to private funding of organizations that finance innovative research.

One such organization is Metavivor, which promotes understanding of metastatic disease and funds research specifically aimed at curing metastatic breast cancer.  If we are going to keep your grandmother, mom, daughter or niece from dying of this disease, organizations like Metavivor are our best bet. 

Skip the sassy bracelets, the pretty pink ribbons, and the clever t-shirts.  Instead, let's face the monster head-on by putting our donation dollars into research, rather than marketing.  Let's get ourselves to the point where awareness will truly save lives...

5 comments:

Delighted Hands said...

Excellent post-thanks for the info and the kick in the seat!

Amy said...

This is excellent info. I'm going to link to this post on Twitter and Facebook tomorrow.

Elizabeth said...

Eileen, this is a great post. I'm going to post a link to this as well on my site.

I found your blog from Donna Peach's blog. I'm a stage III survivor, currently NED but aware that this could change at any time, something most survivors don't want to face.

I'm so glad I followed this link today, and caught this! I'll keep this in mind at the conference in D.C. that I am going to on Friday, Deadline 2020.

Sending good thoughts that those drugs are doing their job!

Elizabeth Danu

The Violet Hoarder said...

AMEN

Anna Rachnel said...

Yes, yes, and triple diple YES!!!!! I only just found your blog, so from one mets sister to another I stand with you in imploring people to look at the facts, ask deeper questions, and ask themselves if what they are doing is really helping to end breast cancer? Awareness and Early Detection Are Not Equal to Eradication and Cure. I write a lot about these issues from the mets perspective as well, and I pride myself in telling it like it really is. Just like you. :) My blog is www.cancerculturenow.blogspot.com. Also have you seen Gayle Sulik's www.pinkribbonblues.org? She has published on the pink cultural issues and writes an incredible blog as well.