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.

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


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.


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.

Copyright OncLive 2006-2012
Intellisphere, LLC. All Rights Reserved.

Breast Cancer Social Media (#BCSM) Community on Twitter

I am very happy to be a part of the Breast Cancer Social Media (#BCSM) Community that meets every Monday night at 9pm EST or 6pm PST. For those of you not on Twitter the # sign is a hashtag that one uses when on twitter to have the group going to the same place to discuss issues in the community. Last night we met and spoke about the topic of MBC (Metastatic Breast Cancer) and had Lori who blogs at Regrounding, speak to the group about her experience with MBC.

During our previous discussions we have been talking about #redefinethepink and came up with a great expression called “Pink Responsively”. We went on to say that we also need to get recurrence and MBC out of the closet. It is so important that there not be a separation of both the breast cancer community and the MBC community. Lori explained how different it is for those in the MBC community because usually when one is first diagnosed with breast cancer they have a chance thinking they have been cured but once you are Stage IV you have a chronic condition that will over time after different chemo regimens take one’s life. As I have mentioned according to Metavovor 30% of all breast cancer patients will go on to have MBC and eventually die from the disease, yet when one is early stage and does surgery, and/or chemo and/or radiation there is a chance they will not have MBC. So as you go through treatment you have a sense of security thinking you have NOD (no evidence of disease) and hope that’s the end of it.

There is a lot more to this but I am so excited that we were written up in an article that I wanted to share it with all of you before I go to my follow up meeting with my oncologist today. Here’s the article about a group that I am very proud to be a part of.

Different corners of the world, all united through the Internet

Breast Cancer Social Media: http://www.bcsmcommunity.orgPosted: Tuesday, October 16, 2012 12:00 am | Updated: 11:19 pm, Mon Oct 15, 2012.

By Kelcie Pegher Times Staff Writer | 0 comments

Dr. Deanna Attai, Jody Schoger and Alicia Staley live on different corners of the United States, but all share one common goal — bringing breast cancer fighters, survivors and advocates for a cure together through social media.

The three co-moderate a weekly chat on the microblogging social networking site Twitter, called #bcsm. The hashtag is used to curate all other tweets about a similar subject. In the case of #bcsm, it curates tweets about Breast Cancer Social Media.

Online cancer support groups have been popping up for years, but in the last year, vocal cancer survivors have harnessed the support into networks. Twitter chats range from those who love yoga or are passionate about computer coding, to support groups of those who have cancer.

Mailet Lopez, the founder of I Had Cancer, a social media website for all types of cancer, began the site in August of last year because of the isolation she felt when she had breast cancer. Lopez said she became the go-to person when a friend, or family member had a question about cancer, and would help give support in her spare time to answer questions a doctor just couldn’t.

Instead of turning to Twitter or Facebook, Lopez, who lives in New York, was encouraged to write a blog.

The blog turned into a website, and was launched as a social media tool to ask questions about different types of cancer and find others in the area. The site has more than 7,000 users, including a few in the Carroll County area.

“People don’t realize that they’re so alone in this process and speaking to someone else makes such a difference, just knowing someone who has your cancer who has been [through] it. It really provides that kind of support and positive outlook that some of us really need,” Lopez said.

Lopez said the site has a visual map a person can organize by cancer or location to find others with similar experiences. When partnering with Squeaky Wheel Media for the site, they used elements from social networking sites they liked in order to make the user experience fluid. Users can give as much or as little information as they’d like, Lopez said.

Online support groups like I Had Cancer can help people at all hours of the night or allow someone to remain anonymous, Lopez said.

Following a recurrence of breast cancer in 2008, Staley found herself turning to Twitter in the hospital in the middle of the night to talk.

“For me it was an enormous, very authentic, engaging support system,” Staley, from Boston, said.

Staley, 41, joined Twitter reluctantly after being prodded into it by friends. One of the first things she did was type “Cancer survivors” into the search bar, and was amazed to see how many people proudly stated they were a cancer survivor in their 160 character biographies at the top of the page.

Staley developed Hodgkin’s Disease during her sophomore year of college in the early 1990s. In 2004, she was diagnosed with breast cancer, due to the radiation and chemotherapy she received for Hodgkin’s, she said. In 2007, she was diagnosed again and underwent a double mastectomy.

What marked Staley’s college experience was feeling isolated. In 2008, that feeling changed.

“Within two weeks [of joining Twitter] I found other young adult women Hodgkin’s survivors that had gone on and developed breast cancer. And it felt like, ‘Wow I finally found other people like me,’” Staley said.


After spending a few years on Twitter, Staley found herself crossing paths with Schoger, based in the Woodlands in Texas, during a health-care chat the two participated in. The two were always passionate about patient issues during the health care social media chat, and exchanged information to try to start a chat for patients and advocates.

On July 4, 2011, the pair got the chat off the ground with about 60 active people chatting for the hour-long session. The chats begin with people introducing themselves, and then the moderator asking a question with the label “Q1,” for the first question, all the while keeping the hashtag in the tweet.

Staley said there are now a minimum of 175 active participants in the weekly chat which tweets on Monday nights at 9. Across the country in Los Angeles, Attai, a breast cancer surgeon, began following the group to help patients around the country, she said. She began in the second week and asked to become a co-moderator in the weekly chat.

“There’s a lot of ways patients in general are getting their information. As physicians we have to accept it and kind of embrace it. I just see it as really an extension of what I do in the office,” Attai said.

This year, Staley, Schoger and Attai had the opportunity to sit down, have a cup of coffee, and finally be in the same place at the same time. Staley said meeting the two women was like meeting long-lost sisters.

“It’s a virtual support group. [Attai] and [Schoger] are incredible women. They’re wonderful role models for me in terms of what they do for advocacy and assistance,” Staley said.

October has been a busy month for Staley and others in the breast cancer social media group, Attai said. Because the #bcsm community has grown so quickly over the last year, the three developed a website to continue the work and advocacy they do.

Monday’s talk was about metastatic breast cancer. The previous week’s was about Breast Cancer Awareness Month, and whether it’s still relevant.

“This is a pretty sophisticated audience,” Attai said. “It’s kind of a step above your average layperson audience.”

In conversations about the pink ribbon, members in the chat thought critically about what the pink ribbon is and what it has become.

“It has taken awareness out of the closet and chipped away at the stigma. As a result, more women have sought help,” wrote the user with the Twitter handle @ABHuret.

A user with the Twitter handle @chemofogbrain replied the awareness ship sailed in the Western world, and now they need to work on where the money goes.

In talking with @chemofogbrain, Attai said she feels awareness is still needed, because some patients she sees in Los Angeles have advanced breast cancer.

Keeping a group of passionate people connected on one subject and respectful of others can be challenging, but the three women are up to the challenge.

“It’s an incredible group of women there are people that are advocates, there are people that are educators. We just had one of our first male breast cancer supporters this week,” Attai said.

Staley said the website will be an extension of the chat, and is expected to launch today.

Reach staff writer Kelcie Pegher at 410-857-7890 or kelcie.pegher@carrollcountytimes.com.

© 2012 Carroll County Times. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

October 13th is Metastatic Breast Cancer (MBC) Awareness Day-It deserves much more attention!

OCTOBER 13th is Metastatic Breast Cancer (MBC) Day. MBC deserves more than one day.

According to The Metastatic Breast Cancer Network here are 13 Facts About Metastatic Breast Cancer:

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.
2. Metastasis refers to the spread of cancer to different parts of the body, typically. bones, liver, lungs and/or brain.
3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.
4. Treatment for metastatic breast cancer is life-long and focuses on control of the disease and quality of life.
5. About 6% to 10% of people are Stage IV from their initial diagnosis.
6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.
7. Around 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.
8. Young persons, as well as men can be diagnosed with metastatic breast cancer.
9. Like early stage breast cancer, there are different types of metastatic breast cancer.
10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.
11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of the disease, some will live long, productive lives.
12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease are unique.
13. To learn more about National Metastatic Breast Cancer Awareness Day and access resources specifically for people living