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Metastatic Breast Cancer: Telling the Whole Story

A message from Dr. Susan Love for Metastatic Breast Cancer Awareness Day

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.orgAdvancedBC.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.

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 at www.dslrf.org.

Follow Susan M. Love on Twitter: www.twitter.com/DrSusanLove

Living with Metastatic Breast Cancer? We need you! Learn about this new study here.

Virginia said...

Dr Love
Thank you for this wonderful post that says everything we in the metastatic community would want to say. As a member of MBCN Metastatic Breast Cancer Network (mbcn.org), I am one of the “not so pinks” who look forward to the day when the breast cancer discussion and campaigns more accurately reflect what needs to be done in terms of research and dollars well spent, beyond early detection.

Nanette said...

Dr Love
I also thank you and agree. I am not mets, am now a two time “survivor”, if you want to call it that. I believe we ALL worry about becoming one of the may who are mets, each and every day after the end of treatments. I have a close friend who is metastatic and can’t even imagine it. She tries her best to live each day to it’s fullest. I will forward your new study information to her and hope for the best for all of us. My biggest hope is that my daughters, including non-related daughters, don’t have to be ravaged by this disease in the future. THAT is where the dollars need to go….to the CAUSE. That is the ONLY way to a cure.
Thank you for all you have done and continue to do for our daughters…
Nanette

Monica said...

At the age of 37, I am a member of this club. My stage 3 breast cancer was missed early by obgyn due to his thinking it was just a clogged milk duct, and this summer we learned it had spread to my brain in 4-5 spots. I have a 2 and 4 year old and live every day wondering when cancer is finally going to get me; however, I try my best to stay positive with the understanding that many women live long lives and I just pray that I am one of them!!!!
Thanks you Dr. Love to dediciating your life to this disease. My breast cancer motto is, “It is not about the boobs, it is about our babies!”

Nanette said...

Another thing….no one honors the ones who have gone before us. Women and men who have endured the treatments dating back to the 50’s all the way to now who have given their lives to science to find a cure. I think of them often and weep for them and their families for their sacrifice.

Cheryl said...

Thanks for your post for those of us living with Stage IV disease. I am always reluctant to share my experience with those newly diagnosed, as I don’t want them to focus on the possibility of metastatic disease. Although there are many treatments available (I am an 11 year survivor and have tried many of the treatments available), I am holding out for that day that metastatic disease is curable not just treatable. I would like to personally thank each woman who has participated in a clinical trial and each researcher who has dedicated their lives to finding the “cure.”

Jana said...

Dr. Love, thank you for your frankly spoken words. It is so frustrating to be so close, yet so far away in the treatment of not just breast cancer but so many cancers. I remain hopeful and prayerful that we will indeed find a cure. Yet, I remember so many of my patients who have passes from this dreadful disease (I am an old oncology nurse) and I can tell you that they will never be erased from my memory or my heart. Thank you so much for sharing this incredible honoring post. Jana http://www.adoctorandanurse.com

Harriet said...

Thank you Dr Love for this important message. The pinkness of October, aside from at times bordering on the exploitative side, paints a picture that indeed does not include the many women living with advanced disease. Many who I have known through my work have often said they feel more in common with people with other metastatic cancers than with the mainstream BC movement - for just these reasons. We can’t leave them out of the discourse. I was lucky enough to survive breast cancer in 1998 and remain free of disease after aggressive tx. But in 2010 I was treated for endometrial cancer, not detected early and am now living with metastatic disease. I finally understand on a deep level how marginalized women can feel, especially during October, when they are living with a devastating disease.

ellen said...

thank you so much for this message and including those of us with stage 4 in your breast cancer awareness. Yeah! Oct 13 is a day when we aren’t hidden in the shadows. I have been living with mets for 9 years.. and I feel like the ship is sinking and the rescuers in the lifeboats only have pink ribbons to offer. After 9 years, I still struggle with the new ‘normal’.
Ellen - MBCN

Kim said...

Hello everyone! My name is Kim and I was diagnosed w/DCIS in Aug of ‘08. This post is dedicated to my mother who lived with Stage IV for many years. My mother was a true fighter like all of you! She had a spirit that came through every day she faced. I remember the day I was diagnosed. I remember the warmth of her hands holding mine and telling me I was going to be ok. I think back to all she went through through sixteen years and almost feel embarassed for feeling scared for myself. There will never ever be a day that I don’t think of my mother and all of us who are going through (and have gone through) this disease. We are all sisters and my thoughts and prayers are with all of us! Be Strong, Be Well and Be United!! Kim

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