I was preparing my breast cancer newspaper at www.scoop.it/t/breasr-cancer-news, and I came across this news story below about a Komen function to raise breast cancer awareness in Bristol, Tennessee and Bristol, Virginia. I started thinking, “do I really want to put this in my newspaper?’ Don’t you think by now the public is AWARE that there is a disease called breast cancer? What’s wrong with this picture?

The article makes no mention of how many women are living with MBC (metastatic breast cancer). It mentions that there are 40,000 deaths in the USA every year but goes on to say, “The more we can make this fight [public], the more it helps our work to make this community more aware and healthy.” The problem is the public knows about the pink ribbon and breast cancer, but they don’t know that in the USA 1 woman dies of breast cancer every 14 minutes. Painting the town pink does nothing to stop theses deaths from MBC. These are not just statistics. These are daughters, mothers, friends, wives, best friends and I could go on and on.

The public needs to know that breast cancer is not just another pretty pink disease. We need to find a vaccine and end metastatic breast cancer once and for all. Approximately 30% of women (and some men) who get breast cancer will die of breast cancer. In 1991, 119 women in the US died a day of breast cancer. It’s 21 years later and 109 women in the US die of breast cancer every day. When it comes to death rates we haven’t made much progress.

The article mentions Curt Rose, board president for Susan G. Komen for the Cure’s Tri-Cities office stating,” the event could play an invaluable role in helping raise breast cancer awareness and the value of early detection among young women.” I thought the Susan G. Komen organization was going to stop misleading the public about early detection.

In another article calling Susan G. Komen in to question, Dr. Lisa M. Schwartz and Dr. Steve Woloshin, both professors of medicine at the Geisel School of Medicine at Dartmouth in Hanover, N.H., wrote. “Women need much more than marketing slogans about screening: they need – and deserve – the facts,” concluded the authors. “The Komen advertisement campaigns fail to provide the facts. This kind of behavior is not very charitable.”

The public doesn’t know about all the women living with metastatic breast cancer (MBC) and what they go through until they die from breast cancer. Thankfully, I know some incredibly fearless friends that have MBC and are trying to live their lives while they have a chronic disease, as they go through a variety of treatment regimens, hoping that a regimen will hold the metastatic sites at bay instead of finding out the disease has progressed. Its agony to wait for test results to know if a regimen is working, while trying to keep a positive outlook.

I am upset because the women with METS from breast cancer have been lost in this sea of pink. We also don’t know why some breast cancers metastasize and some don’t. Sometimes the pathology can make things more difficult as well as if someone has the BRCA1 or BRCA2 gene mutation, but other times it just happens that some cells hide away during primary treatment or the breast cancer is found when it has already metastasized. These cancerous cells usually travel to the brain, bones, liver or lungs.

There are so many other bloggers, breast cancer patients, and breast cancer advocates that understand the way the press and the organization of Susan G. Komen has missed the facts and figures as well as the lack of fairness to those women and men who have MBC.

Laura Wells who has MBC expressed the problem so well in her blog “Beyond Pink” by writing, “I understand the need for this cheerfulness, and these stories of survivorship.  I know how important, how necessary it is to be told that, especially in your case, there is hope for a cure. But, I am beyond that definition of hope.  My hope is for clean scans, and new treatments that work so well, I am still alive to attend my daughters’ weddings and meet my grandchildren. I hope to put off as long as possible, leaving behind a husband, who is grieving the loss of his wife.

My breast cancer is no longer just pink.  It now, includes gray, the color of nothing – the nowhere land where I live, no longer a survivor, but a fighter, never giving in, never giving up.  And, black, the color of death, for surely, one day, my fight will end. And the problem with “pink” is simply that, with all the awareness it generates, no one is aware of stage IV cancer, the cancer that kills.  And no one is prepared to join this club, which is beyond pink, because it will not be spoken of, for yet another year.”

The public needs to know that breast cancer treatment is extremely difficult. Breast cancer patients do not get lovely new boobies when they must have a mastectomy. When women lose their breast tissue their breasts are literally sliced open to make sure they get as much tissue as possible and there are big scars. When I went through my primary treatment for breast cancer, I thought I would just go through treatment and return to my normal life. I know so many other fearless friends that had the same experience as me. Our lives were forever changed. As Susan Love has said many times “Breast cancer treatment involves a slash and burn mentality”. We need to make some real progress in ending these horrible deaths and ending the disease itself.  The National Breast Cancer Coalition (NBCC)  has set a deadline to end breast cancer in 2020. For more information on this deadline and what the NBCC is doing go to http://www.breastcancerdeadline2020.org.

We have to do more to educate the public about breast cancer and make a change in how MBC is understood. For starters we need to change the conversation about those going through primary and metastatic breast cancer treatment. There are so many things that need improvement to those with MBC and there is a lot of work ahead. You can sign the petition telling the  Susan G. Komen for the Cure organization to increase funds for scientific research and increase transparency. You can also sign the petition from the NBCC at http://www.breastcancerdeadline2020.org/homepage.html, to whoever is elected the president that would create a resolution to end breast cancer in 2020.

I also think that it is important that we don’t start having “pink wars” just because the public has been misled about breast cancer.  We can all learn from the mistakes of the past and try to move ahead, especially as we enter the “breast awareness month of October.” Our goal is to have the press and the public see the truth about breast cancer, so that we truly can make progress and end this disease once and for all. If we continue to do business as usual we will end up with 800,00 deaths a year worldwide in 2030.

Also, all the survivors that don’t have METS like myself don’t know if we will be part of the 30% that will end up with MBC and have to die because we have only made drugs that can add time to survival before our death. I have attended many symposiums with famous oncologists presenting abstracts about chemo drugs that extend life for a short period of time. For example the drug halaven for MBC patients has a progression free survival (PFS) rate of 2 3/8 months. When these types of chemotherapy trials are presented at famous oncology conferences in reference to the PFS of the drug everyone claps, but a few more months of life is not much progress. On top of that the cost and research as well as trials involved to get FDA approval for these drugs are very expensive and a long process. At the same time, when my fearless friend Li Bailey was dying and she went on halaven I was grateful for the extra 2 3/8 months of her life. Yet I know, we need to find a way to stop METS before it starts and reverse METS when it moves to other parts of the body.

We owe the people going through treatment, especially those with MBC to do everything in our power to help give them quality of life. I remember when my fearless friend Li Bailey’s disease was clearly progressing rapidly, we decided we would try to enjoy her quality of life, not quantity. We can keep feeling angry, but it is better to hope that we will end breast cancer in 2020. As we work towards these goals while the public sees the truth about breast cancer, we can find comfort in the fact that all of our hard work can make a difference, and together we can finally see an end to this horrible disease.

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Bristol‘s month-long observation of fight against breast cancer

Pink 3

ANDRE TEAGUE/BRISTOL HERALD COURIER – Sue Lindenbusch, vice president of Oncology for Wellmont Health System, talks Thursday about promoting breast cancer awareness and education during the month of October in historic downtown Bristol.

By: Roger Brown | Bristol Herald Courier
Published: September 14, 2012
Updated: September 14, 2012 – 9:39 AM
BRISTOL –Bright pink and hot music will be out in full force across the Twin City in October to mark Breast Cancer Awareness Month, local officials announced Thursday.“Whenever you get to the month of October, you [instantly] think of pink and Breast Cancer Month,” Sue Lindenbusch, Wellmont Health System’s vice president of oncology, said during a Bristol Chamber of Commerce news conference to promote “Real Women Pick Pink” – the city’s month-long observation of the fight against breast cancer.“We all have the same passion about getting the word out about breast cancer,” Lindenbusch said. “The more we can make this fight [public], the more it helps our work to make this community more aware and healthy.”Nearly 40,000 American women died of breast cancer last year, according to http://www.breastcancer.org, which also notes that breast cancer and skin cancer are the most commonly diagnosed cancers among females in the U.S. Through 2011, there were more than 2.6 million breast cancer survivors in this country.A major component of the observation will involve Bristol’s iconic welcome sign downtown. More than 1,000 pink light bulbs will be inserted over a three-day period – beginning Sept. 27 – and the transformed sign will be illuminated during an Oct. 1 evening ceremony at the Bristol Train Station. The lights will stay in place throughout October.“It’s going to serve as a beacon to raise awareness about breast cancer,” said Matt Bolas, executive director of the Bristol Convention & Visitors Bureau, regarding plans to give the sign a pink hue.Also, several national and local female musicians will take part in an Oct. 20 “Real Women Pick Pink” concert festival at various indoor and outdoor venues on State Street.Curt Rose, board president for Susan G. Komen for the Cure’s Tri-Cities office, said the event could play an invaluable role in helping raise breast cancer awareness and the value of early detection among young women.“It’s going to allow us to reach a whole new segment of people who might not otherwise [think about] breast cancer,” Rose said.rbrown@bristolnews.com
(276) 645-2512
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6 thoughts on “The Public needs to know the truth about Breast Cancer

  1. I do believe we WILL make a bit of a difference… a dent. People are listening and people are asking more questions. I’m with you…. we need to lift up our mets sisters and make them the top priority. All the pink in the world isn’t going to fix that.

    Hugs…

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    1. Thanks AnneMarie for understanding and working along with us to make sure that those with METS are not forgotten especially as we approach the big Pink October. I also agree with you that we are making a difference and we will continue to keep telling anyone that will listen how important this is. We have lost too many great friends to this disease and they matter. All the pink may not make a difference but talking about it will. Thanks again for your input! XoXoXo and extra hugs!

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  2. “Wow Susan I had no idea there were so many deaths from breast cancer. They really have made it a pretty pink disease and it is so great that you are making the public aware about the truth concerning breast cancer. Great post!”

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    1. Julie, I am so glad that you are getting the real picture about breast cancer. I wish the facts were not as grim. There are some cases where women with MBC go on to live 10 years or more, but theses cases are less common. Meanwhile, I will continue to get the message out and try to change the conversation so that we can no longer bury those living with MBC.

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