Hope from the NBCC Deadline 2020 Advocate Summit and Lobby Day

As I returned home from the NBCC (National Breast Cancer Coalition) Advocates Summit and Lobby Day to end Breast Cancer Deadline 2020, I was really happy I went. I have to admit I had so many reservations going. I labored over my decision. I thought I was going to fly home with “Frustration – Part Two.” There’s been a lot of people angry with the NBCC because of issues about putting MBC (Metastatic Breast Cancer) under the bus literally. My fearless friends have real reasons to be upset. Here is an organization that has educated so many women who have had to hear the words “You or a loved one has breast cancer.” They have an incredible program called Project LEAD which is an intensive six-day course teaching the science and very important advocate issues about breast cancer.

MusaSmI have learned a great deal from Project LEAD, LEADcasts, summits and attending Breast Cancer Symposiums that stemmed from first learning with the NBCC about breast cancer. Great scientists, researchers, doctors and leaders of breast cancer advocacy taught me the grim statistics that now in the US alone 108 women die a day of MBC (metastatic breast cancer). That’s one woman every 14 minutes. There are also men but the stats are less. In 1975 there were 112 deaths a day in the US from MBC. It’s 2013. Four less deaths a day is not much progress when it comes to death rates.

So here was my dilemma. The NBCC who taught us about the death rates has a campaign to end breast cancer in 2020. So what happens to the metastatic patient while they figure out how to get a vaccine to end breast cancer?

There has been a lot of differences of opinion within the breast cancer community and understandably so. If you are only preventing breast cancer and preventing metastatic breast cancer what of the person diagnosed as metastatic. The very people they say they are helping…Are they really helping them?

I went to symposium expecting to come home finished with them. But my mind was open. I saw that Musa Meyer was going to the conference. She is the head of the advanced metastatic breast cancer organization. She is committed to the advanced breast cancer community and through her website http://www.advancedbc.org and the BCMets,org online community Musa focuses daily with BCMETS.org by helping women with MBC and their families understand treatment options and emerging research.abc

There was also an impressive line up of speakers. Dr Dennis Slamon gave a great talk. He is best known for being instrumental in the identification of the Her2/neu oncogene and the resulting treatment of tratusunab (Herceptin) which has been hailed as the first triumph in an emerging wave of targeted therapies. Some other speakers included Dr. Susan Love, Dr. Michael Baum, Dr. Peter Lee, and Dr. Barrett Kramer to name a few. In my next post I will be writing more about what some of these speakers spoke about.susan-love-cancer-20130213-001

Shirley Mertz of the MBCN (Metastatic Breast Cancer Network) was also at the conference. If leading metastatic breast cancer patients and their organizations were getting behind the deadline, and I have always supported the NBCC, I owed it to myself and Advocates for Breast Cancer to attend and make up my mind.

The most moving plenary session I attended was called “Effectively Targeting Metastasis in Breast Cancer.” First Shirley Mertz spoke to us, endorsing Deadline 2020. She talked about the differences between early stage breast cancer patients and MBC. 80-90% of all breast cancer patients start at early stage breast cancer. Early stage can be anything from DCIS (ductal carcinoma in situ) which is pre-cancer and a little more complicated but for this post I will leave the explanation as that. Early stage cancer can also be cancer that is contained in the breast where someone might only need a lumpectomy or a mastectomy and/or radiation depending on the size of the tumor and whether there is lymph node involvement. Otherwise another early stage breast cancer is when the cancer travels to the lymph nodes and the patient could have a lumpectomy, chemotherapy and/or radiation and/or a mastectomy but the most important thing to understand about early stage is that one is told they have a 70% chance of survival and many do whatever treatments that are recommended or they feel will work and after treatment some prescribed medications depending on their pathology. Some also choose alternative therapies. For most early stage patients, when they “finish primary treatment”  and are told they have NED (No Evidence of Disease) they can have the chance of knowing they may be “cured.” Then they are told they have a 30% chance of a metastatic recurrence that can happen at any time, but at least there is an end point to the treatment. Of course there are many side effects and I am oversimplifying “treatment” as an end point but I am trying to show the differences between early stage breast cancer and MBC. MBC is chronic and so far there is no known “cure”.

IMG_5124Shirley explained about how she goes for chemotherapy infusions and where she goes there are early stage patients getting chemo and when they get their last treatment they have a special bell and everyone celebrates their end point of chemotherapy treatment. When one has metastatic breast cancer there is no end point to treatment so Shirley remembers the joy of knowing there was an end point but unfortunately for the MBC patient this will never happen. There are also people with inflammatory breast cancer which is an unbelievably aggressive form of breast cancer that many do not survive. Again for simplicity I am just trying to show the many differences that exist in breast cancer diagnosis and treatment options.

After Shirley Mertz, Suzanne Faqua PHD continued talking with us about the science involved and critical issues in metastasis research. Suzanne is a professor in the Lester and Sue Smith Breast Center at the Baylor College of Medicine. She specializes in metastatic research especially working with hormone positive MBC.

She explained the way current science recognizes the need to study not only the primary tumor but looking at the similarities and differences of the heterogeneity of a metastatic tumor. As we look at the critical issues in metastatic research our approach is important. For optimal targeted therapy we must identify key pathways (key drivers), block the pathway completely, anticipate escape mechanisms and block them too, and explore combination therapy. She talked about studies related to PIK3CA status in blood, liquid biopsies, circulating tumor cells and how we must do targeted therapies in human trials. Her talk had some of the complicated science involved with tumor dormancy, including the fact that there aren’t current dormancy-cell killing drugs in clinical trials. This needs to change.

Some of her personal perspective of the critical issues in metastasis research includes the need for us to get the pace moving. We have to change the dogma that “The horse is out of the barn” so we can prevent metastasis. There is a lack of clear “drivers” to target. Suzanne also spoke about how important it is to now understand the metastatic tumors and be able to collect tissue samples from biopsies of metastatic tumors and analyze them. Apparently there is a problem within the research community where the researchers want to study the tissue samples from metastatic tumors and how there is difficulty getting theses samples. The woman sitting next to me said she gave her samples and is disappointed that researchers aren’t getting their samples. Another problem is funding. Negative funding will slow and halt progress. That’s why Lobby Day was so important and we also need to keep the program at the DOD (Department of Defense) going so we continue vital research especially when it comes to metastasis.

The NBCC is going to have a special meeting in June with scientists, doctors and metastatic breast cancer patient advocates to study metastatic breast cancer and tumor dormancy. The science is complicated. But someone explained to me that the basics are if the scientists can take the metastatic patients and get their metastatic tumors to go back to sleep and not spread any further, they can go on to live with the disease for many years. The best way I can understand and explain it is that with AIDS they have not found “the cure” but they have found medications that allow people to continue to live with AIDS and they can live for a very long time.

This information is very important to me. I know I have written about the death of my best friend from MBC who survived and thrived through primary chemo with me and lived as long as she could with triple negative MBC. I have so many friends with metastatic breast cancer now, and met some really special new friends at the conference and I have written about how upset I am that they need to have more money dedicated to metastatic research.

One of the difficult things in the breast cancer world is that different organizations have different agendas. Sometimes there are clashes. I am someone who wants everyone to work together. I believe in teamwork. It is the spirit of teamwork that helps me understand the mistakes of the past with breast cancer and pink culture yet try to move forward with my advocacy.

This is what I gained from the people who are committed to deadline 2020. Advocates are working in every way they can to see an end to this disease so that we don’t have to have our sons and daughters hear the words “you or a loved one has breast cancer.”pink_425x320

I understand that some people are moving on from the NBCC and others like me and many of my new friends that I met in DC are supporting the NBCC. For those that don’t want to support them, please know I understand your point of view and I am not going to tell anyone they have to feel the same as I do. This was my experience at the conference. This is what I went away feeling that I am doing what I believe is right for myself and my organization. I am passionate about my advocacy and making a difference with breast cancer and nothing will change that. I hope that one day this horrible disease can be contained and women can go on to live happy productive lives with the most quality of life that they can as result of the scars that come with this disease.

I respect that others see some of what the NBCC is doing with a different lens. When it comes to our passion and intentions, we are all on the same side. What is most important is that we respect each other and work towards ending this disease in every form while we continue to place much emphasis on metastatic research.

Setting a deadline is always a good idea to set goals and try to reach them. Had we never set a goal to get a man on the moon we never would have footage of Neil Armstrong stepping on the moon and saying thDepartment_of_Defense[1]e famous words, “One small step for a man, one giant leap for mankind.”

Lobby Day was also important to get bipartisan agreement and congressional representatives to sign “The Accelerating the End of Breast Cancer Act”, H.R. 1830, and that we continued to get the funding support for the Peer-Reviewed Department of Defense Breast Cancer Research Program (BCRP).

I also met some amazing new fearless friends many who currently are metastatic and have such interesting stories. As we all know it is our unique stories that move us to understand more about this horrible disease and fuels us to do whatever we can to help one another in this land of cancer.

I am so glad I went to DC and came back with all of this hope as well as meeting great new friends. The Summit was so much at once and my only criticism is that they packed in so much that we didn’t even have a break during meals because there were speeches and meetings during the whole time. Even though it was exhausting, the Summit was really worth it. Hope is a great thing to have in our lives.

Charity Navigator

Here is a great place that rates breast cancer charities to see if they are using donations for curing and preventing breast cancer. Below is an article from Charity Navigator including some of their ratings so you can see where your donations are being used. Many of us blog about “think before we pink”, while my breast cancer social media community that meets on twitter every Monday night from 9-10 Eastern Time, calls it #redefinepink, as well as my new favorite expression, “Pink Responsively”.  This article will help you make informed decisions for where to donate your money.  You can click on this link: Charity Navigator and use their search button to check on other charities as well as click on the charities mentioned below for much more information.

Charities Working to Prevent and Cure Breast Cancer

Breast Cancer Charities Rating
Dana-Farber Cancer Institute 4 stars
Breast Cancer Research Foundation 4 stars
The Rose 4 stars
Breast Cancer Connections 4 stars
National Breast Cancer Foundation, Inc. 4 stars
Living Beyond Breast Cancer 4 stars
Breastcancer.org 4 stars
Lynn Sage Cancer Research Foundation 4 stars
American-Italian Cancer Foundation 3 stars
Young Survival Coalition 3 stars
Breast Cancer Fund 3 stars
SHARE 3 stars
National Breast Cancer Coalition Fund 3 stars
Barbara Ann Karmanos Cancer Institute 3 stars
Susan G. Komen for the Cure 3 stars
Breast Cancer Prevention Fund 2 stars
American Cancer Society 2 stars
Prevent Cancer Foundation 2 stars
The Breast Cancer Relief Foundation 1 stars
John Wayne Cancer Institute 1 stars
United Breast Cancer Foundation 0 stars
Walker Cancer Research Institute 0 stars
American Breast Cancer Foundation 0 stars
Y-Me National Breast Cancer Organization DA
Breast Cancer Society, Inc DA
Coalition Against Breast Cancer DA

Although breast cancer receives the most attention during Breast Cancer Awareness month each October, charities work all year long to raise funds for the prevention, treatment, and cure of this devastating disease. All throughout the year people have the opportunity to participate in various walks, runs, and other special events raising money to fight breast cancer. The pink ribbon has become the symbol for awareness of the disease and can be found adorning everything from soda cans to sneakers.  But how many of us stop to examine those pink ribbon charities soliciting our support?

At Charity Navigator we’ve done the work for you. We’ve reviewed the financial health of over two dozen of the largest charities working to fight and prevent breast cancer in America. Although these charities have been very successful at generating support, together raising nearly $1.7 billion annually in contributions, the disparity in their financial health is enormous.

The good news is that several of these charities efficiently utilize donations to pursue their mission of curing and preventing breast cancer. However, others will astound donors with their inefficient operations and low marks for Accountability & Transparency. For example, one charity spends less than 2% of its budget on fundraising expenses, while another spends nearly 98%! Many of these charities spend at least 80% of their budgets on programs and services, while four spend less than 50%. And while more than half of them earn high ratings for their commitment to Accountability & Transparency, three of them earn 0-stars and two earn just 1-star in this area.

The Public needs to know the truth about Breast Cancer

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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Why I Care so much about Breast Cancer Advocacy

breast cancer research

I am finally ready to start writing about how much breast cancer has made an impact on my life. I kept a journal for seven and a half years writing monthly about what was happening around me after finding out I had breast cancer. There is so much work I have yet to do to like working with other patient advocates to see an end to this disease.  You can also read a condensed version about my history with breast cancer in my blog.

If you are reading this, you probably have had breast cancer, still have breast cancer, have a family history of breast cancer, or have been affected by the disease. If you’re a survivor, you know this disease is not just a sea of beautiful pink. I wish it were because I love the color pink. It’s such a happy color. In this blog I am not going to get in to the “pink-washing” of breast cancer, but anyone touched by the disease knows it’s not a pretty picture.

I was fortunate in joining the National Breast Cancer Coalition (NBCC) and if you haven’t heard about them you should go to http://www.stopbreastcancer.org (after you read my blog), and see what they are all about. I am so inspired by the president Fran Visco and her vision of seeing an end to breast cancer by 2020.  The NBCC also realizes that to help eradicate breast cancer, patient advocates need to be well educated about the disease.

The NBCC has special classes to train new advocates. I am proud to say that I am a LEAD Graduate where I learned so much from incredibly well-respected doctors in the medical community and speakers including people who work at the National Cancer Institute. In 2011, I took the Project LEAD Workshop which consisted of six days learning about he science of breast cancer, Rna, DNA, assays, statistics, pathology, chemo regimens, injecting mice with breast cancer, fat glands, clinical trials, radiation, advocacy, how the news gets it wrong, what is myth and what is fact, the future of breast cancer, the Artemis Project, (where scientists, doctors, researchers, and patient advocates are working on a vaccine to prevent breast cancer), genetics, types of breast cancer, tests, questioning  what you read or hear about breast cancer, health care, advocacy, and so much more. They gave us thick notebooks of articles, abstracts, definitions, copies of slide presentations, and more paper to take notes. It was so exciting to speak after the lectures with people like Dr. Diane Palmieri from the National Cancer Institute and be able to talk to someone who is working in the lab to help end breast cancer since I have been physically going through treatment of the disease. We even had a visit from Dr. Susan Love who wrote  “Dr Susan Loves Breast Book” which most breast cancer survivors consider the Breast Cancer Bible. She is fascinating to speak with and she is so knowledgeable about breast cancer.

The NBCC helped me to become an educated advocate learning as much as possible about breast cancer. As a result I attended the Asco Breast Cancer Symposium and two San Antonio Breast Cancer Symposiums where leading doctors in the field talk about the science of breast cancer, clinical trials, abstracts, patient cases, and so much more. I was also able to go to Washington DC two years in a row with the NBCC to meet with congressional members from my state, to get money appropriated by the Department of Defense, and sign a congressional letter talking about ending breast cancer in 2020.  I will talk about this in much more detail in another blog. Because I have had breast cancer, know other breast cancer survivors, watched my best friend die of breast cancer,  have other friends who are either going through primary treatment or have breast cancer that has metastasized, I am passionate about making advocates4breastcancer.org an organization that will help current patient’s lives and help bring an end to breast cancer.

To increase our visibility to other breast cancer patients and advocates, we are in the process of developing a web site named advocatess4breastcancer.org or a4bc.org. Watching special friends who are experiencing breast cancer that has metastasized  (or mets as we call it, which means the cancer has spread to other parts of their bodies), is very difficult. These are the people we want to help as much as we can. The deadline is too late for them. All they have are toxic chemo drugs that can for a time slow the spread of the disease and possibly even get rid of tumors, but once the cancer has spread it most likely will come back.

Our non-profit is devoted to making sure that they are not “the forgotten ones”. At this time no one  knows how to reverse mets, nor how to destroy mets so they do not return.  Yes, some chemo drugs can shrink tumors and they can hold them at bay, but they can’t erase them forever without them coming back. Our goal is to do everything in our power to help discover and fund research that can destroy mets permanently and end breast cancer.

To read more about the organization, please click on the “About Us” tab.