Metastatic Breast Cancer Awareness Day

Today, October 13, is Metastatic Breast Cancer Awareness Day.

Today I am grateful for efforts to bring more attention and research funding to metastatic breast cancer, the cancer that kills. I have too many people I care about who live in fear of metastatic disease. I want future generations to be able to put that fear away.

My sister Zita was diagnosed with BC in 2004 and I was scared. Scared for her. Scared for my 6 other sisters and I. My sense of security was shattered, and I wasn't even the BC patient yet. In 2006, my sister Mary Jo was diagnosed with BC. Fear amplified. Sense of security smashed to smithereens.

My own diagnosis came in 2008. Living your worst fear is tough, but definitely different than living in fear of your worst fear.

My worst fear today is that one of us will have a metastasis of our BC. (Mary Jo was diagnosed with a primary lung cancer in 2010. She is plugging along and doing well. I can only imagine what it felt like to get that news a second time.) But we are all still here, still living life, still surrounded by our loved ones. Too many BC patients suffer a metastasis and it is what claims 40,000 lives a year. Two dear friends of mine, Sheila and Jenny, also are BC patients. And there's the many wonderful women I have met in support group, through the Voices of Hope DVD projects, and in the blogging world. I worry and wonder who may end up with mets. But I don't live in fear. I try to take action.

I wrote the essay that follows and submitted it to the Minneapolis Star Tribune. Rejected. Then I submitted it to USA Today. I like submitting to USA Today because their rejections are swift. (My motto--nothing ventured, nothing gained.)

Then I remembered that I have my own blog now. So here's that essay:
Giving Voice to the Silenced
 The wrong kind of awareness has us stuck in a pink rut in the midst of another Breast Cancer Awareness Month. We are hung up on mammograms and early detection, but they are only part of the picture, and misleading at that. A new “m” word needs to be moved front and center to help dislodge the pink stalemate. The word is METASTATIC. It’s big, bold, and scary.

This Saturday, October 13, 2012, is the 4th annual Metastatic Breast Cancer Awareness Day. Many do not know what metastatic breast cancer (MBC) is, and those who do live in fear of it. MBC is the cancer that kills, the cancer that takes 40,000 lives a year in the United States. Breast cancer that stays in the breast is not deadly. Metastatic cancer means it has left the initial location and spread. The most common places breast cancer metastasizes to are the lungs, liver, brain, and bones. There is no cure for MBC, though many live for years after diagnosis. The current mainstream breast cancer movement ignores MBC patients. They don’t fit the smiling, happy faces of survivors that marketers want to put on breast cancer, especially this time of year, so they are shut out. It is time we give voice to those who have been silenced. Their hope is no less real, but it is more urgent.

Up to 10% of those diagnosed with breast cancer are at Stage IV, with metastasis at initial diagnosis. Another 30% of those first diagnosed with early stage breast cancer will later suffer a metastasis. That can happen in two, eight, or twenty years. We don’t know who it will happen to or why. Cancer cells are very stealthy and they do not give up their secrets easily. Do we really need more pink stuff to buy or another catchy phrase on a t-shirt?  “Saving Second Base?”  How about saving lives?  We need a concerted effort to pick up the pace of research so we can unlock the mysteries of these mutant cells and stop them.

We add insult to injury for MBC patients when we turn away in fear. It is likely we all know someone who has died of breast cancer. With names like Deb, Theresa, Carol, Tricia, Elizabeth, Kim, Lori, and Rachel, they have loved ones who miss and mourn them. We owe them a better effort. We owe our daughters and sons, nieces and nephews, and the next generations a better effort. The pink mania of recent Octobers has put a singular face on breast cancer—triumphant survivors who “beat” the disease—creating illusions of progress and a sense that the right fight means victory. This is a slap in the face of all who are handed a Stage IV diagnosis, implying that they failed to be strong or courageous enough. It is to these current MBC patients we owe our best effort.

Instead of being paralyzed by fear, we can be catalyzed by it. We need to look metastatic breast cancer and the 150,000 American women and men living with it today in the eye. Start with facts and resources such as those provided by the Metastatic Breast Cancer Network at http://mbcn.org/. Funding for advanced disease is currently very low, at about 2% of overall cancer research dollars. Join Metavivor’s (http://www.metavivor.org) “30% for 30%” campaign to increase that 2%.

Start conversations with others and listen to the real stories of courage and survival, the voices of those living with advanced breast cancer. One such voice belongs to Lisa Bonchek Adams. I don’t know Lisa personally, only just recently meeting her in the blogosphere, about the same time she found out that she has Stage IV breast cancer. The cancer she was diagnosed with nearly six years ago has metastasized to her bones.     

With sisters diagnosed in 2004 and 2006, and my own breast cancer diagnosis in 2008, one of my worst fears is Lisa’s new reality. With her permission, I encourage you to check out her reality at http://lisabadams.com. A strong dose of truth is needed to break through the pink haze as we mark this Metastatic Breast Cancer Awareness Day.

(If you go to http://mbcn.org/ you will see more stories from the brave women living with MBC. They are adding a story a day this month. Less pink, more action.)

How does this tie in to gratitude? How doesn't it?  There are far worse things to lose than your breasts. All ANY of us have is today. Make the most of it.





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