Breast Cancer Awareness month - Day 13
Today is Metastatic Breast Cancer Awareness Day. In the summer of 2009, 9 MBC patients, along with their families and friends, went to Washington DC and lobbied for one day in October to be set aside to raise awareness for metastatic breast cancer. A resolution was passed unanimously by both the Senate and the House of Representatives on October 13, 2009, designating this as a day to put MBC in the spotlight. (Has it worked?)
I am copying a blog post from the Dr. Susan Love Research Foundation blog, published in October 2011. I read it and the words have stuck with me, probably because they say so well what I have a hard time articulating sometimes.
Metastatic Breast Cancer: Telling the Whole Story
By naz On Thursday, October 13, 2011
By now you have noticed that it is October, and that a pink haze has settled on the land. The message of early detection saves lives has been broadcast on every form of media available. But there is a part of the breast cancer story that is less feel good and less frequently mentioned woman living with metastatic breast cancer.
Have we gotten better at detecting breast cancer? Yes. Have we gotten better at treating this disease? Yes. But we haven’t gotten good enough. Despite doing everything that we now can, about 25 percent of the women who are diagnosed with and treated for early-stage breast cancer will later learn that they have metastatic disease. An additional 4 to 6 percent of all breast cancer cases will be in women whose initial diagnosis is stage IV, metastatic disease.
Right now, about 150,000 people in this country are living with metastatic breast cancer. At this stage, the cancer can be treated and women can live for many years with stage IV disease but it is not considered curable. These women connect on websites like BCMets.org, AdvancedBC.org, and BrainMetsBC.org to find support, get the latest research information, and to share their hopes and fears as they try to embrace what many refer to as the new normal living with metastatic disease.
These women, as Roni Caryn Rabin wrote in the New York Times, are not [leading] pink-ribbon lives: They live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World.” Some will live for years; others won’t be so lucky. Elizabeth Edwards comes to mind.
Thursday, October 13 is Metastatic Breast Cancer Awareness Day, and I can’t tell you how important it is that there is at least one day in October that is dedicated to acknowledging that not everyone is cured and not every cancer is found early. We need to stop congratulating ourselves on our progress and start focusing on figuring out why these women have not benefited from all the money we have raised. Reach out today to someone you know that represents the other side of breast cancer, the one that is not so pink. We will not have accomplished this goal as long as one woman dies of this disease!
You can learn more about metastatic breast cancer as well as find a list of resources and programs for women with advanced disease here.
***********************************************************************
Me again. I bolded part of this because it's my reality now. I've been so very lucky that I haven't had bad side effects or crippling fatigue (yet), and my doctor holds off on scans if he feels I'm doing well so I don't get scanxiety every 3 months (yet). It's coming. I really don't dwell on it and I try not to let my cancer control me, but I have had to start rethinking some things, like maybe I shouldn't slide down the riverbank now, but instead go down the boat launch, because of the effect these meds will have on my bones (there's been talk of bone scans in my future! woo hoo!). Tiny worries right now. I'm lucky!
I am copying a blog post from the Dr. Susan Love Research Foundation blog, published in October 2011. I read it and the words have stuck with me, probably because they say so well what I have a hard time articulating sometimes.
Metastatic Breast Cancer: Telling the Whole Story
By naz On Thursday, October 13, 2011
By now you have noticed that it is October, and that a pink haze has settled on the land. The message of early detection saves lives has been broadcast on every form of media available. But there is a part of the breast cancer story that is less feel good and less frequently mentioned woman living with metastatic breast cancer.
Have we gotten better at detecting breast cancer? Yes. Have we gotten better at treating this disease? Yes. But we haven’t gotten good enough. Despite doing everything that we now can, about 25 percent of the women who are diagnosed with and treated for early-stage breast cancer will later learn that they have metastatic disease. An additional 4 to 6 percent of all breast cancer cases will be in women whose initial diagnosis is stage IV, metastatic disease.
Right now, about 150,000 people in this country are living with metastatic breast cancer. At this stage, the cancer can be treated and women can live for many years with stage IV disease but it is not considered curable. These women connect on websites like BCMets.org, AdvancedBC.org, and BrainMetsBC.org to find support, get the latest research information, and to share their hopes and fears as they try to embrace what many refer to as the new normal living with metastatic disease.
These women, as Roni Caryn Rabin wrote in the New York Times, are not [leading] pink-ribbon lives: They live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World.” Some will live for years; others won’t be so lucky. Elizabeth Edwards comes to mind.
Thursday, October 13 is Metastatic Breast Cancer Awareness Day, and I can’t tell you how important it is that there is at least one day in October that is dedicated to acknowledging that not everyone is cured and not every cancer is found early. We need to stop congratulating ourselves on our progress and start focusing on figuring out why these women have not benefited from all the money we have raised. Reach out today to someone you know that represents the other side of breast cancer, the one that is not so pink. We will not have accomplished this goal as long as one woman dies of this disease!
You can learn more about metastatic breast cancer as well as find a list of resources and programs for women with advanced disease here.
***********************************************************************
Me again. I bolded part of this because it's my reality now. I've been so very lucky that I haven't had bad side effects or crippling fatigue (yet), and my doctor holds off on scans if he feels I'm doing well so I don't get scanxiety every 3 months (yet). It's coming. I really don't dwell on it and I try not to let my cancer control me, but I have had to start rethinking some things, like maybe I shouldn't slide down the riverbank now, but instead go down the boat launch, because of the effect these meds will have on my bones (there's been talk of bone scans in my future! woo hoo!). Tiny worries right now. I'm lucky!
Comments
Post a Comment