Metastatic Breast Cancer Awareness Day – Every Day and every October 13

MetsDay13We all know that October is Breast Cancer Awareness month. There’s pink everywhere and all sorts of breast cancer awareness campaigns. In 2009 Metastatic Breast Cancer (MBC) got one day for awareness. Thanks to the efforts of 9 metastatic patients and countless others, they got congress to designate October 13th as Metastatic Breast Cancer Awareness Day.  It’s a start. “Breast Cancer Awareness” without “Mets Awareness” is not awareness at all. Now we need everyone to be aware of MBC all year-long. Every day should be Metastatic Breast Cancer Day.

Ribbon_whitelinedpinkwashingpicEspecially in October (Breast Cancer Awareness Month) there have been lots of questioning of the words, the color and what really matters. There’s frustration in the breast cancer community because breast cancer has been painted with survivors and death rates trending in a favorable direction. Sadly when it comes to MBC and death rates we haven’t come very far.

For example in the United States alone in 1991 there were about 112 deaths from breast cancer a day. This year there are about 108 deaths a day in the US. While those 4 lives a day are very important people I don’t think that in over 20 years preventing 4 deaths a day is tremendous progress in this country. There are about 155,000 people living with MBC in the US a year. There are almost 40,000 deaths a year from MBC in the US and around 400 of these deaths are men.

545527_494545153891973_631458727_aAlmost 30% of all breast cancers become metastatic. Some start out with “mets” (about 6-10% of cases) but if you get breast cancer at an earlier stage there’s up to a 30% chance that you will become metastatic. Those who have MBC know this. We still don’t know the cause of many breast cancers and we also don’t know why breast cancer patients become metastatic.

MBC_Infographic_01_v14There is no cure for MBC. There are many drugs that can extend lives for years, but treatment is life long switching from drugs that work for a period of time until a drug no longer works. Every case is different and there are different types with some types more difficult to treat than others.

What we do know is that MBC kills very special people. When it comes to breast cancer, people’s stories paint the picture of what happens with this disease. One of them was my fearless friend Li Bailey. In our world of social media very few people knew her. She didn’t have a blog, Facebook page or Twitter account. She had Triple Negative (TNBC) MBC and there were fewer options for her treatment. She knew every detail of her case, and was a very sharp ePatient.

Li and I went through our primary chemo together at the same time. We got together a lot as friends and it was a relief that I wasn’t bald alone. We learned so much about breast cancer together. I had a local recurrence. Today I am NED (no evidence of disease). She had a mets recurrence on her birthday, February 19, 2009. She danced in to the light on January 6, 2012. She went through various treatment options that were wonderful when they worked. Having to change regimens is a harsh reality for anyone with mets. While my friend did not live as long as I would have liked with mets, there are so many cases with different outcomes. I have lots of friends that respond longer to treatments who are living with mets for a very long time.

Li had a wonderful ability of living in the moment with me on a great day. I’m not saying there weren’t some bad ones but we made a pact that on great ones we would be in the moment.

IMG_3171IMG_5232One of the best days was when Li got her dog Shelby as a puppy after we finished our primary chemo. I am so grateful that she chose me to take care of her dog. I loved visiting her and Shelby so many times. Shelby helps me every day keeping memories of Li alive. She is such a wonderful gift. I know Li would be proud of how well Shelby is doing, while she is a constant source of joy in my life.

There’s not a day that goes by that I don’t think of Li and all my mets sisters living and dying from MBC. I was very lucky that Li let me in to her life with mets and accepted my help. It’s so rewarding to able to help. Li helped me a lot too. She never missed being with me for my many surgeries and I was with her for hers. Having one day for MBC awareness is a start, but we have a long way to go and there should be many more days of awareness for MBC. As patient advocates we have to make metastatic research a priority. We must stop this terrible disease and prevent it from spreading to other organs. This research will hopefully lead to helping end all cancers.

San Antonio Breast Cancer Symposium (SABCS)

Below is information taken from the San Antonio Breast Cancer Symposium (SABCS) web site explaining what the symposium is all about. Although I was unable to attend this year, I have attended in 2009 and 2010 and it is a very exciting fast paced meeting with incredible presentations of abstracts and clinical trials that are all about breast cancer.

In the evening the Alamo Breast Cancer Foundation had wonderful medical professional speakers that have many patient advocates as well as advocates who receive a scholarship in attendance to go over the presentations that went on during the day. Some of my fellow bloggers and friends including AnneMarie (Chemobrain….In the Fog With BC from 2 AD), Lori (regrounding),(CJ (metavivor.org), Gayle (pinkribbonblues.org), Jody  (women with cancer), and many more attended and they have blogged and tweeted about the conference.

I have followed the conference and put articles in my daily breast cancer newspaper at http://www.scoop.it/t/breast-cancer-news. I have picked a great source called Onc Live that has a great review of the presentations in articles that if you missed the conference or just wanted to know about it, here is an excellent place to read articles of presentations in San Antonio.

I had hoped this year would bring more research for Metastatic Breast Cancer (MBC) and as a patient advocate I am discouraged because there wasn’t much news on MBC, except progress with those that are HER-2 positive. As a patient advocate I think that all of us need to use our voices to get funding for more research when it comes to MBC.SABCS-AACR-Logo

About SABCS

Meeting Profile

For thirty-five years, the symposium’s mission has been to provide state-of-the-art information on breast cancer research.  From a one-day regional conference, the symposium has grown to a five-day program attended by a broad international audience of academic and private researchers and physicians from over 100 countries.

The symposium aims to achieve a balance of clinical, translational, and basic research, providing a forum for interaction, communication, and education for a broad spectrum of researchers, health professionals, and those with a special interest in breast cancer.

In 2007, the Cancer Therapy & Research Center (CTRC) at UT Health Science Center San Antonio and the American Association for Cancer Research (AACR) announced a collaboration for the future of the San Antonio Breast Cancer Symposium.  The symposium has been renamed the CTRC-AACR San Antonio Breast Cancer Symposium.  Complementing the clinical strengths of the highly regarded annual San Antonio Breast Cancer Symposium, the AACR’s scientific prestige in basic, translational and clinical cancer research will create a unique and comprehensive scientific meeting that will advance breast cancer research for the benefit of patients.

In 2005, Baylor College of Medicine became a joint sponsor of the symposium and will remain in the CTRC-AACR collaboration.

C. Kent Osborne, MD, Professor of Medicine and Molecular and Cellular Biology, Director, Dan L. Duncan Cancer Center, Director, Breast Center, Baylor College of Medicine, Peter M. Ravdin, MD, PhD, Ruth McLean Bowman Bowers Chair for Breast Cancer Research & Treatment, Director of the Breast Cancer Program, UT Health Science Center San Antonio and Carlos L. Arteaga, MD, Director, Breast Cancer Program Vanderbilt-Ingram Cancer Center, Vanderbilt University are Co-Directors of the symposium.

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Bringing the Oncology Community Together

Oncology Conference Articles
The mental toll and stress of a breast cancer diagnosis might factor into the cognitive impairment experienced during chemotherapy treatment, commonly referred to as “chemo brain.”
Eight-year follow-up data from the phase III HERA trial has confirmed that 1-year of adjuvant trastuzumab should remain the treatment standard in women with HER2-positive early-stage breast cancer.
Patients with triple-negative breast cancer had no statistically significant improvement in disease-free survival when they received adjuvant treatment with chemotherapy plus 1 year of bevacizumab.
Eribulin mesylate failed to show a statistically significant survival benefit compared with capecitabine in women with previously treated metastatic breast cancer.
Long-term follow-up results showed that the hypofractionated regimens were as effective as the 50-Gy standard in women with early-stage breast cancer.
Patients with triple-negative breast cancer who have residual disease after receiving neoadjuvant chemotherapy have a series of genetic alterations that are clinically targetable and may warrant further study.
Preliminary research suggests that in-vitro exposure to an HDAC inhibitor may sensitize triple-negative breast cancer cells to treatment with a PARP inhibitor and cisplatin.
Adjuvant chemotherapy improved survival rates in women with isolated local or regional breast cancer recurrence, according to results from the CALOR trial.
Postmenopausal women with advanced estrogen receptor–positive breast cancer lived longer when they received a 500-mg dose of fulvestrant as compared with a 250-mg dose.
Combining the investigational PD 0332991 with letrozole as first-line therapy extended progression-free survival in women with advanced estrogen-receptor positive breast cancer.
Sentinel lymph node surgery may provide a less-invasive alternative to axillary lymph node dissection for nodal staging in node-positive breast cancer.
Extending the duration of adjuvant tamoxifen treatment to 10 years was more effective than the standard 5 years of treatment in protecting against recurrence and death among women with ER+ breast cancer.

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Intellisphere, LLC. All Rights Reserved.

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.