October 12, 2009

Metastatic Breast Cancer - No Pretty Pink Ribbon

By Ellen Moskowitz - President, Metastatic Breast Cancer Foundation

Oct 7, 2009 - 10:23:33 AM

(HealthNewsDigest.com) - It’s October. The pink ribbons are out. Survivors flock to tell their success stories. We hear how they fought hard and won the battle and can now move on and get back to their life - usually as a ‘better person’ for the experience. We all applaud. It feels good. There is closure and we all love closure. But what about the 30% of those with breast cancer whose cancer has spread beyond the breast to the bone or a vital organ ( usually the lungs, liver, brain)? That 30% is the metastatic population.

Everyone knows someone who had surgery, chemo, radiation and then struggled with their fears and finally got their life back on track. Everyone knows someone who died of metastatic breast cancer. What people don’t know is that, in the United States, there are 155,000 of us currently living with metastatic breast cancer.

CANCER IS A GROWTH – NOT A GROWTH EXPERIENCE

Those of us living with metastatic breast cancer don’t have a story that can be tied up with a pretty pink ribbon. We don’t ever get to move on and get back to our life. Cancer treatment IS our life.

There is no cure for us BUT there are treatments – and we stay on treatments forever. And that is a good thing. The bad news is that the cancer cells learn how to outsmart the treatment drug, and then the treatment fails us and we need to go on to the next treatment – always living with the fear of running out of treatments. It’s the feeling of being in an eternal race.

We don’t fit in with all the cheering about ‘beating the disease’. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure. Our treatments go on and on and on - we hope for a very long time.

METASTATIC BREAST CANCER AWARENESS DAY

Back in 2007, several of us living with metastatic disease were sitting around Nina’s dining room table, struggling for ideas. What could the Metastatic Breast Cancer Network (MBCN) do to help bring this disease out of the shadows? We realized that if we were to ever impact funding and research to extend to those whose cancer has already spread, we would have to bring awareness to this disease and get us out of the shadows.

It was Amy who suggested a proclamation declaring a special day in October for metastatic breast cancer. She contacted Mayor Bloomberg’s office in NYC and we got the proclamation! Feeling thrilled, we sent out a copy of the proclamation to all 250 members of MBCN. Next thing we knew, Meg in Princeton, NJ got a proclamation, as did Living Beyond Breast Cancer (lbbc) in Philadelphia, along with a proclamation from Buffalo Grove, Illinois.

In the spring of 2008, a member in Maine wrote to MBCN announcing she got a proclamation from the Governor of her state. Our awareness campaign kicked into action! We email blasted our then 900 members requesting they contact their mayors and governors to get proclamations for Metastatic Awareness Day. To our amazement, within 48 hours, we had over 150 responses!

We heard from members across the country, and they sent the email on to their friends, and we heard from them too. And we heard from women across the various oceans.

WE HAD HIT A CHORD

Some of the responses we received included....

I want to shout. Many of us are living isolated, with great sadness that we may not be around for long. I will fight this disease with humor and positive thinking, but sometimes that goes so far.

Thank you for your efforts to make all of us with stage 4 BC heard. This is a difficult kind of struggle for as long as we are going to be able to exist.

We need to let everyone know that we want to be taken seriously, not just people waiting to die--but people fighting every minute to live.

When breast cancer is discussed on TV, we never hear the word metastatic. Let's show the metastatic face--stand up ladies, for you are fighting the battle in ways that give the word COURAGE a new meaning.

I've been living with metastatic breast cancer for nearly 5 years--and people DO NOT UNDERSTAND the never-ending nature of this disease.

Thank you for helping us come out of the shadows and into the light.

I have felt very lonely and different from all my breast cancer friends. I am in a different category. People say I am so glad you are cured and it’s uncomfortable and hard for them to get my situation.

My mother passed away from metastatic breast cancer and this is the first time I've seen in words described how she felt exactly. I will speak out for her.

AWARENESS OF THIS MISUNDERSTOOD DISEASE

Today MBCN has 1400 members. As I type this, proclamations are coming in from mayors and governors across the country. Last July, MBCN spearheaded National Metastatic Awareness Day by sending a group of patients with metastatic disease to Washington.

Awareness is growing. Our faces are being seen. Our voices are being heard.

We need this disease to be understood by the breast cancer community, the medical community and the public at large. We need to bring attention to our cause so that research will focus on the process of metastasis in order to develop more and better targeted treatments to extend life and make metastatic breast cancer a truly chronic disease.

For more information on Metatsatic Breast Cancer Awareness Day, visit Metastic Breast Cancer Network.

2 comments:

  1. amazingly thought provoking postx

    ReplyDelete
  2. great post- I hope a lot of people stop by and read it.

    ReplyDelete

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