Only 5 percent of research dollars go toward metastatic breast cancer.
October 13 is Metastatic Breast Cancer Awareness Day. When I started this journey, I admit I was a bit turned off by the messages put out by groups such as Metavivor and the Metastatic Breast Cancer Network because so much of it focused on dying. I also didn’t identify with their opinion that people with metastatic disease were ignored during Pinktober, as it’s known to become.
But the longer I’ve been a survivor, I am seeing their point. Certainly, I’ve had way too many friends die of this disease, and the majority of them have been way too young. And I’ve faced my own mortality to be sure. Don’t get me wrong; I refuse to focus on death and am all about living life fully and keeping myself healthy in body, mind and spirit. However, I just can’t ignore the death toll; something needs to be done.
Unfortunately, most of the attention is going toward early detection, which is fine, but that doesn’t cure cancer. I was diagnosed at stage II with no lymph node involvement, yet it still came back and spread. There is some money going to find a preventive vaccine, which is what the National Breast Cancer Coalition means by their goal of ending breast cancer by 2020. It just doesn’t include us metastatic survivors. Believe me, I would love to have a vaccine that would ensure my daughter will never have to worry about getting breast cancer, but I want to be here with her to see that day. As an aside, I already know of a preventive vaccine at Cleveland Clinic that is ready to go to trial if only it had funding (I’ve written about Dr. Tuohy’s vaccine in previous posts).
Today I came upon a spirited discussion thread on the advanced breast cancer group on www.Inspire.com how we can raise awareness foradvanced breast cancer. Among other things, people discussed creating a movement like they had for AIDS. Remember when AIDS was a death sentence? A group of activists got out there and made it a national discussion. Though they haven’t found a cure; people with AIDS now are living longer, healthier lives. Inspired by the AIDS quilt that traveled the country, Inspire now has a virtual “quilt” to show the magnitude of metastatic breast cancer. You can add your name to the quilt and share it with others by going to this LINK .
Another great campaign is Metavivors’s Pink Elephant in the Room campaign. Go to their fan page by clicking this and hit LIKE. For each LIKE, $1 will be donated to metastatic breast cancer research. Go to their website, www.MBCaware.org and an additional dollar will be donated.
But perhaps the best news of the day came when I was writing this post. Meghan, a fellow metastatic survivor, has worked hard with her local Komen for the Cure affiliate to raise awareness of metastatic breast cancer. As I was typing away, she messaged me that Nancy Brinker has invited her and her husband to dinner. Meghan kindly asked me and others from the metastatic community for key points to discuss. I recently saw a Komen ad that featured a metastatic survivor, and I’m hoping we’re on to something here. If Komen leads the way, I think others will follow. Here’s my input:
Komen needs to spend more money on research to cure the disease, rather than awareness. They have done a magnificent job of making us all aware; time for a cure!
Of those research dollars, 30 percent should go to metastatic breast cancer research, since it affects 30 percent of the breast cancer population.
People should be able to designate dollars to metastatic or other types of research so they know their money is going where it should.
And this is just my pet peave: stop partnering with retailers that produce products known to increase the risk of breast cancer, such as greasy KFC, paraben-laden makeup, and BPA-ridden plastic bottles.
I’d love to hear your ideas and would be happy to pass them along. Let’s get the pink elephant out of the room!
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