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NBCC Sets Deadline to End Breast Cancer

We are happy to have the following guest blog from the National Breast Cancer Coalition (NBCC) President, Fran Visco, talking about setting a deadline to end breast cancer in 2020. NBCC is one of our collaborators and have played a key role in the success of the Army of Women.  Read this important piece from Fran and I hope you take a minute to learn more and get involved with the Breast Cancer Deadline 2020.

Special Message from Fran Visco
On September 20, 2010, we called for a global strategy to end breast cancer by January 1, 2020. We launched  Breast Cancer Deadline 2020®. When we announced this bold move, Susan Love said, “We can be the generation that stops breast cancer—and we must be the generation that stops breast cancer.” It’s time. With the power, commitment, passion, intelligence and courage of our advocates at NBCC, we will make this happen.

By calling for an end to breast cancer, we’re calling for an end of business as usual. Breast Cancer Deadline 2020® changes the conversation from raising awareness about the disease  to one that asks, “What must we do differently to end breast cancer by January 1, 2020? How do we succeed?” It upends “business as usual” and brings back the sense of urgency needed to save lives.

A Deadline Is Not Enough—We Need a Plan
NBCC knows setting a deadline is not enough. There must be a plan. We have developed a strategic plan for meeting the deadline and we are engaging  all who can help achieve the deadline goal. Stakeholders who will come to the table to help end breast cancer will include representatives of the scientific, regulatory and health care communities, industry, policy makers or advocates. Stakeholders will also include visionary, high-risk, high-impact leaders who can provide valuable perspectives. No one who can help will be excluded.

How will we meet the Deadline?

  • Scientific Summits
    NBCC advocates believe breast cancer can be eradicated by focusing and aggregating efforts on two key areas: learning how to stop breast cancer metastasis from taking lives and learning how to prevent the disease from developing.  We will host two Strategic Summits this year—one on metastasis and one on prevention—bringing together 25-30 leading investigators from academia, industry, government, regulators and advocates. Workshops will then be held around these issues in 2012 and beyond.

    We have already begun this work. In March 2010, we began looking at the feasibility of a preventive vaccine for breast cancer. Some of the leading breast cancer researchers, as well as a cadre of multi-disciplinary visionaries are working on this, NBCC’s Artemis Project, to develop a vaccine ready for clinical trials in five years.

  • Breast Cancer Deadline 2020 Legislation
    By setting a deadline, our advocates demand that from this moment forward, all research and policy decisions surrounding breast cancer are made and guided by the goal of ending this disease by 2020. This month, NBCC is convening a small group of individuals who think innovatively about how governments should work and what role they play in research and health care. As an outcome of this public policy roundtable, we will develop legislation that will help achieve Breast Cancer Deadline 2020.
  • Annual Progress Reports
    Beginning with a baseline report in May 2011, NBCC will issue annual progress reports about Breast Cancer Deadline 2020®, summarizing the state of breast cancer as well as the state of our own work to end breast cancer.

Join Us
I invite you to join our ever-growing coalition of individuals and groups committed to working to end breast cancer by 2020. Are you with us?

Actions You Can Take to Advance Breast Cancer Deadline 2020®
Here are a few actions you can take today to help make Breast Cancer Deadline 2020® a reality:

  • Register for NBCC’s 2011 Annual Advocacy Training Conference
    NBCC invites you to become educated about Breast Cancer Deadline 2020®. From April 30-May 3, 2011, NBCC will host its Annual Advocacy Training Conference, during which you can learn how you play a vital role in changing the conversation to support Breast Cancer Deadline 2020®.  The final day of the NBCC conference, advocates go directly to the nation’s decision makers and ask them to change the conversation in public policy and scientific research to carve out the path that will move us toward the end of breast cancer by January 1, 2020. Register before February 11 at www.BreastCancerDeadline2020.org/2011Conference to get the early bird discount ($125 for NBCC members. $160 for non-members).
  • Enlist Your Community in Breast Cancer Deadline 2020®
    There are many groups and individuals who want to see an end to breast cancer but don’t yet know about Breast Cancer Deadline 2020®. Identify, engage, educate and encourage them to get involved. NBCC has tools and information to help grassroots supporters bring Breast Cancer Deadline 2020® to your community.
    Visit www.BreastCancerDeadline2020.org to learn more.
  • Urge Your Senators and Representatives to Support Breast Cancer Deadline 2020®
    NBCC’s Action Center has messages and tools to help you send information to your members of Congress so they know their constituents support Breast Cancer Deadline 2020®—and are calling on them to support it as well.

Judith said...

Have you looked at all at the actual causes of breast cancer? Diet, xenoestrogens, excess ionizing radiation, lack of melatonin due to excess light exposure at night and lack of sleep, diet, toxins in the environment, etc.? It seems to me you have to back up a few steps and get to the causes. But there isn’t much profit in that, is there? Creating true health and a healthy environment and food stream? Tragically, no.

Julia said...

I am a 2 time breast cancer survivor, 3rd generation to fight and only one to survive. Grandma died in 1934, mother died in 1979. I don’t want my kids to battle this, but the odds are they will as they are 20’s and 30’s now. I am ALL for finding a cure/prevention to this disease. But WHAT HAPPENED TO THE CALL FOR THE END OF BREAST CANCER BY 2010???? I am active with a number of large and small breast cancer groups, trying to help where I can to move this forward. Been to state capitol, DC twice… You have to follow the money trail… there has to be a larger profit for a cure/prevention than there is in treatment, and the MEN have to get on board as well. You have to get medical groups and pharmaceuticals on board publically so you can publically hold them accountable to a date. Otherwise, it’s just lip service and in 2020, someone will set the date up to 2030…. I WANT A CURE/PREVENTION NOW - NOT IN 9 MORE YEARS!!!

Susan said...

Hi we have a new organization… Busting Breast Cancer: National Breast Cancer Prevention Project. Our Know Breast Cancer education program http://www.knowbreastcancer.net offers 7 Easy Ways to help stop breast cancer before it can start

These are all inexpensive and healthy lifestyle changes all women can choose to make;they comprise a better-safe-than-sorry approach and can significantly lower breast cancer among younger women and among post menopausal women

Hope this is helpful to all women who would like to find inexpensive, healthy and safe ways to help ourselves and our daughters from this unnecessary epidemic

Susan
susan@knowbreastcancer.net

Emily said...

I was diagnosed with stage 4 breast cancer in June of 2009 after having passed the five year mark from my initial breast cancer diagnosis in 2003. I obviously have spent a lot of time dealing with this disease. My main observation is that treatment is still such a blind thing. Although there are many drugs to treat breast cancer mets, there is no way of knowing which ones will be effective in a given patient. In effect, each patient becomes her own individual drug trial at a time she is confronting terminal disease.

As so many women are in treatment for breast cancer, I think there should be an opt-in national database that collects information on their treatment. Doctors should have standard forms to submit to minimize time and paperwork (this could and should be done electronically). Each patient file could be given a coded file number and the data submitted should include the pathology report broken down into medical shorthand, pertinent patient history, DNA information if available, the type of treatments given, treatment response, and side effects experienced by the patient.

This should be a routine part of patient care. On the initial visit, the doctor (or nurse) should start the patient file with available information and submit it to the national database. At each subsequent visit, when there is a significant change in treatment or response, an update should be sent to the file. The result would be a complete history of each submitted case and one that could be cross-referenced by researchers to learn what treatments are working for what patients with the goal of targeting treatments more specifically to the patient’s disease and medical situation.

There is an obvious field laboratory in doctors’ office and clinics across the nation that could be tapped into to improve treatment choices for women living with breast cancer. This idea could also be broadened to predict disease and disease causes by starting a second national database (again opt-in) for disease-free young women whose doctors track their medical history with a record of illnesses, medical procedures, drugs given, any unusual exposures to toxins, and other pertinent factors.

Such databases could be established under the auspices of HSS and the NIH and designed to maximize patient privacy and minimize political controversy.

I hope something like this will be considered. The individual experiences of millions of women with this disease are an obvious resource waiting to be used.

Patricia C. said...

I realize this is the electronic age and recognize the value of getting the word out electronically. Would you consider designing a template people could download and print on business card stock (e.g., Avery 5160) that we could carry around and as we network — face to face — invite women to join the Army of Women? I could be simple as LOGO and “dedicated to eradicate Breast Cancer in 2020! Help! Join the Army of Women! and the website address? I can do my own but if it has the official logo and better wording it could be a successful way to get more to join.

Mary said...

I still believe it is the estrogen in everything we eat, procesed foods, birth contral pills and HRT for those who do not have the BRCA gene. It is now rampant in the women in their 30’s and 40’s. That certainly was not true in our generation before the pill.

Robin said...

I agree with Julia. Why do we have to wait 10 MORE YEARS? My mother died 30 years ago from breast cancer. It should have been stopped MANY years ago. I believe it’s ALL about the money. Shame on the drug companies and all of us who continue to give money to them. Enough is enough!!!!!!!

Judith said...

Supporting this effort is one of the few things we can and should do not only to cure but to prevent this from happening to our friends and loved ones. Could not help but reply to Emily (above note)–There already is and has been a National Cancer Data Base..not only for breast cancer but for all cancers. Cancer Registries at every hospital accredited by the American College of Surgeons must provide well over 150 fields of information for each cancer patient. All patients are followed on an annual basis for survival, recurrence, etc. The National Cancer Registrars Association (NCRA) certifies persons to be Tumor Registrars assuring that this work is done diligently and correctly so that it can be used by researchers around the country. Cancer is a reportable disease so this is not an opt in or opt out situation but it is done in such a way that confidentialty is assured. I recently retired as a CTR “Certified Tumor Registry” and I am so proud to have been a part of this for many years. Yes, I too am a statistic in my hospitals Cancer Registry. I always hope that my work & that of other CTR’s is being used for the valuable information it contains. Working together is how this will be accomplished. Thanks to all who have devoted their lives to assuring that I am a survivor

Lesley said...

I lost my best friend to BC 14 years ago and my sister is a survivor. Is the army of women brave enough to stand up to the food and drug industries to really be doing what it takes to end BC? Healthy lifestyle and whole food choices need to be made by each of us and a desire to provide those same healthy choices to our daughters. Do we have the courage to stop the easy availabilty of “foods” that are actually toxic to us. There are no magic silver bullets to health, but making good choices towards life each day are doable. Lord help us all!!

Vicki said...

Understanding the cause is really the only way to preventbreast cancer in the first place; learning more about how its complexities can only lead to understanding and preventing metastases. The website referred to above (knowbreastcancer.net), I’m afraid, offers risk reduction methods rather than prevention methods. These are different and an example of the work to still to be undertaken in further educating the public, reasearchers and our legislators. First, they need to know about the importance of setting policy that will fund important, new and innovative work that includes many perspectives including those of knowledgeable advocates; second, they need to remember that there is more to breast cancer than detecting it (which is NOT preventing it); access to treatment means more than health care coverage; the people who care for patients cannot work in silos, nor can they conduct their research in silos. Come together, seriously.

Patti said...

I think it imperitive that we coordinate all modalities; scientific research, drug trials, new genonome trials, current treatment protocal data, and see that they work together without political influence to achieve the 2020 goal of erradication of breast cancer. It is a lofty vision, but out there are many positive inroads being made.
Finding the cause is less hopeful to me, given the causative variance of the 80% statistical factor of breast ca occurance over the 20% genetic component. This includes focusing on the food chain or thinking soley that heathly food choices will inhibit the onset of breast cancer, or that bad choices have created these cellular changes, or chemical environmental influences. Not that simple.
So I set my sights on the advances being made in molecular chemistry as to the whys of DCIS mutacy, cell mytosis with breast cancer, et al. But my major thrust/question toward the 2020 goal is: How do we get better imagery (gamma ray vs digital mammography?)for early detection and fund it so it is cost effective for all women? When 1 in 8 women will get breast cancer do they know the density of their breasts and how this influences their own self-exams,those at their doctor’s office exams or with their mammograms? Appalling, we are not educated to our own anatomy and what it means diagnostically when so much is at stake. Let’s educate women so the pink ribbon marketing gives us answers.

Laura said...

How ’bout the deadline to end ALL CANCER. Women die every day from cancer - tongue, throat, neck, pancreatic, stomach, brain…you name it, it’s all there…and it’s ALL HORRIBLE. We need alternative treatments that don’t ravage bodies and minds, and we need cures - for all of it…not in 10 years, we need cures NOW!

Marianne said...

I agree that our food supply is a factor for some cancer. Hopefully the cause will be discovered soon. I have lost a sister and friends to cancer, breast and ovarian. On a different subject, for years I have had an annual mammogram and ultrasound because of dense breasts. I am 56 years old. NOW you have to have a mammogram, have it read and make another return appointment for the ultra-sound….Only after the radiologist determines that your breasts are still dense. How many women are terrified of the process and will not follow-up with the ultra-sound? They may go for the mammogram and not return. This is crazy. It also assumes that working women can get additional time off to return for another appointment. How can this be?!

Arleen said...

My mom was diagnosed with breast cancer in 1997 and then again in 1999 when she was 70 and 72. I was first diagnosed in 1999, the same time my mom was diagnosed, and I had a left breast mastecomy with a tram flap reconstruction. I had chemo and was put on tamoxifen and then femara. It returned after 8 yrs finding it in my bones first and then my right breast and in my reconstruction. I again had chemo and was switched to aromasin. I started to receive Zometa and am still on it even though I now have jaw issues. I am also on Xeloda. I am not BRACA positive.

I would love to see no one else have to suffer through what I have had to endure but I also don’t want the scientists to stop developing new drugs for people who are living with this disease.

JACKIE said...

I WAS DIAGNOSED WITH BREAST CANCER THAT HAD METASTATICED TO 10 LYMPN NODES. I HAD 9 MONTHS OF CHEMO AND 33 RADIATION TREATMENTS. I DID NOT HAVE RECONSTRUCTION SURGERY BECAUSE I KNEW THE RADIATION WOULD MAKE A MESS OF THE NEW BREAST. I WAS DIAGNOSED IN AUGUST 2003 AND AS OF TODAY, 7 12 YEARS, I AM STILL CANCER FREE. I KNOW THIS BLOG IS FOR BREAST CANCER BUT OVARIAN CANCER IS PART OF THE BRACA GENE DEFECT. TEN MONTHS AFTER MY DIAGNOSIS MY SISTER WAS DIAGNOSED WITH OVARIAN CANCER AND FORTUNATELY, AFTER 6 1/2 YEARS, SHE IS IN REMISSION WITH NO RE-OCCURRENCES. MY THIRD, WHO WE ARE NOT CLOSE TO, WAS ALSO DIAGNOSED ABOUT THE SAME TIME WITH BREAST CANCER AND SHE HAD JUST THE CANCER AREA REMOVED. I AM NOT SURE IF SHE HAD ANY CHEMO OR RADIATION. ALL THREE OF US HAVE 2nd COUSINS, ONE WITH BREAST CANCER AND
ONE WITH OVARIAN WHICH HAS COMES BACK 3 TIMES. THERE IS ONLY ONE COUSIN IN HER 40′S WHO IS STILL CANCER FREE. ALL OF US 2nd COUSINS HAVE NIECES WHO HAVE NOT BEEN DIAGNOSED YET. THREE OF US HAVE HAD GENETIC TESTING AND I DID NOT HAVE THE BRACA GENE AND NEITHER DID MY OVARIAN SISTER AND COUSIN. TWO YEARS AGO MY ONCOLOGIST, DR JOYCE O’SHAUGHNESSEY, WANTED ME TESTED USNG A NEW GENETIC TEST AND I WAS STILL NEGATIVE.
MY SISTER AND I WERE PARTICIPATING IN THE “STAR” RESEARCH PROGRAM TO STUDY TOMIXIFIN AND RELOXIFN AND WE OBVIOUSLY BLEW THE STUDY.
I BELIEVE THAT IF THE GENE CAN BE FOUND IN ALL OF US THERE MIGHT BE SOMETHING THAT COULD BE DONE TO KILL THAT “NASTY” GENE.

JACKIE

Judith said...

I had an incident with my right breast in 2004. It bled. I did yearly mammograms with the leading women’s cancer hospital in the US right here in Houston. They didn’t do anything with me to prevent having cancer. I found a lump myself Oct 2010. Nov 5 I was diagnosed with IDC and it had mestastized to one lymph node. Then they moved swiftly to check my body. Luckily it hadn’t mestastized to other parts. Then they wanted me to take chemo, remove my breast, and do radiation. I asked why chemo and they told me to shrink the tumor. I was stage II. I asked about alternative methods to shrink the tumor and they wouldn’t listen to me at all. They had data on hormone blocking therapy and wouldn’t offer it to me. They said I had to do both. They were ready to put a port in for chemo, 6 months right then. After I did the research on what they were offering, I realized I most likely would die if I followed their procedures due to my condition. They still wouldn’t listen. I found a different hospital and a surgeon from a friend. The surgeon said there was a test you can take to determine if you will benefit from chemo!!!! A surgeon!!! Not the oncology people….who SHOULD HAVE told me when I said I didn’t think I could take chemo. So I took the test. And guess what….the type of cancer I have, ER+, will NOT BENEFIT from chemo at all. I am highly disappointed in our traditional medical care that they are pushing chemo to people who will not benefit and in fact could be harmed by it. It took me 2 months, with the test and lots of talking and explaining and research on my part to convince the oncologist at the 2nd hospital that this is right path for me. And guess what. It is working to reduce the tumor. After 6 wks he cannot even feel the boundaries of the tumor. I think others need to know about the OncotypeDX test. It is done in California. I still have more to go through with the doctor. As I believe I can retrain my body to fight cancer itself. Everyone has cancer and they fight it off. Mine is doing it now with the antihormone therapy. That is the future for breast cancer. I am using Dr. David Servan-Schreiber’s book: Anti-Cancer: A new way of Living and following that methodology. Seems to work. And someone gave me a meditation CD from a holy man from India who is using music therapy to connect with the brain to release the right stuff to heal yourself. More of the future. We need to bring back true “doctoring” and working with human beings vs pushing drugs and surgery on people. Those are my thoughts.

Emily said...

Judith, I just read your response to my post about a national cancer database. Obviously, I was completely unaware of it. Nobody has ever mentioned it to me though I knew my hospital keeps pathology samples for twenty years. Can you tell me something about how the database is used? Have any targeted treatments for cancer been developed based on the data? Who has access to it? Where can I learn more?

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