ESCAPE 2016

escape_4_cancer_advocates_-_about_us_-_2016-09-06_09-25-30It was so thrilling to attend #ESCAPE2016. How wonderful the BAG IT organization is committed to combining patient advocacy with self discovery. meditation, group exercises, meetings about effective lobbying, running non-profits and even a special Indian dance. bag_it_-_2016-09-06_09-20-08

I went to Escape seeking solutions to balance my personal and professional passions. I discovered I hide my ongoing complications from this disease, because so many of my close friends with stage IV are being ignored and facing much more difficult circumstances. I want to save everyone from the scars of cancer. I have lost so many family members and loved ones to this disease.

IMG_4954The desert was beautiful, but a little warm this time of year. With a no cell phone policy at Miravel Resort, it was nice to not feel so absorbed by the 100’s of tweets, FB posts, texts, and emails, as I tried to balance the great conferences with classes and even group meditations in pods!

I loved that it was a small mix of all kinds of cancer advocates. There was healthy food, meditation, and networking. We had an amazing talk from Shelley at the NCCS where she talked about how we influence policy. IMG_4897

I hope to go again next year. I was fortunate to meet some great people and partake in combining advocacy with self discovery. Patient advocates (especially volunteers) need this type of balance. The burn out factor is real especially when passions are high, time is of the essence to save lives and yet all of us must remember to stop, take a breath, and try to be in the moment especially when the body and mind are filled with stress.

It’s also important to put our personal health first. No matter what stage or complications one has from any cancer, loved ones helping, medical professionals, patient advocates, researchers, and doctors, we are all in this together. We must respect each other and try to move forward. My own personal side effects have slowed me down sometimes, but it’s time we allow ourselves to feel.

IMG_4950I also realized that I have been dealing with a lot of grief. Thankfully I was surrounded by awesome people. Version 2During many of the special meditative and group activities, I found myself quite emotional. I do believe that when it comes to cancer there’s so much emotional pain, physical changes, highs and lows, and some very tough times because of the incredible toll this disease can take. Thank you to the sponsors who help bring Escape2016 to patient advocates.

I came home so much more refreshed and ready for the tasks ahead that keep this new balance. It’s important to take time for reflection and always be mindful of making sure we keep taking care of our selves, while content to push forward helping others.

A4BC at SABCS 2015

We are pleased to announce the success of our newly implemented scholarship program. We awarded two amazing women, Jennie Grimes and Grazia De Michele paid scholarships thanks to our generous donors at Advocates for Breast Cancer (A4BC).

Jennie Grimes Susan Zager grazia
Jennie Grimes, Susan Zager and Grazia De Michelle

Grazia De Michelle – an Italian born woman currently living in the UK.was diagnosed with breast cancer in 2010, at the age of 30, and has been a patient advocate ever since. She was treated in Italy where, unlike the United States, breast cancer advocacy is still in its infancy and the level of patients’ engagement with researchers and healthcare providers is low. As a result, at the end of active treatment, in 2012,  Grazia started  her blog, Le Amazzoni Furiose (The Furious Amazons), to promote Italian women’s involvement in the international debate on breast cancer. A year later, she joined the Breast Cancer Consortium, a network of scholars and advocates interested in breast cancer, critical health-literacy and evidence-base medicine founded by medical sociologist Gayle Sulik.

Jennie Grimes – a metastatic breast cancer (MBC) patient is literally dying for a cure. She is 35 years old, going through a rough time because there are limited choices of drugs to keep her alive. She asked the professionals at #SABCS15, “please keep me alive.” My heart is breaking because I wish there was more available for her and so many others dying of stage IV breast cancer.
Metup_Dying_for_a_CureMetup_Dying_for_a_Cure_-_2015-12-24_12.51.05Phyllis_(@Groz_P)_Twitter_-_2015-12-27_13.15.18The most exciting part of the symposium was (A4BC) joining with other organizations that are working toward the same mission.  We met with Beth Caldwell, mother, wife, cancer patient, METUP co-founder, and blogger. Meeting people that we know through social media and being able to interact with them is so meaningful because we are able to join forces to save lives. We also met Corrie Painter PHD who along with NiKhil Wagle, MD is working on the MBCProject.org. They believe in sharing the data. This is a whole new way of approaching research.

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 Learn More at: http://www.MBCProject.org

The truth is that when it comes to breast cancer, we are in an epidemic. Over 40,000 women and 400 men die each year in the U.S. alone from Metastatic Breast Cancer. This is the same number of deaths in the U.S. that occurred during the height of the AIDS epidemic. So while many breast cancer organizations use pink marketing to raise money for a cure, the reality is they just keep saturating the public with the idea that breast cancer is a pretty pink disease with survivors.

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People mean well. But they don’t understand that living with MBC has nothing to do with whether the person “fights hard enough.”

Many people did not understand why we are demanding that Stage IV needs more focus; too many women (and some men) are dying. What we’ve done in 25 years has not had much impact on the death rates. We must prioritize our efforts to save lives.IMG_1713

If we could finally understand why someone gets breast cancer, like we understand how AIDS is spread, it would be a huge help towards finding life saving treatments and prevention.

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If you want to be part of the work we are doing at Advocates for Breast Cancer, please consider giving a tax free donation. We have a new donation page on our site. We are so grateful to our donors and supporters. Wishing you peace, health, love and happy holidays! 💝💖💝💖

 

Welcome to Our New Site!

CLICK TO GO TO WWW.A4BC.ORG
CLICK TO GO TO WWW.A4BC.ORG

Welcome to http://www.a4bc.org! There’s some typos and a few formatting issues that we are working on, so please bear with us!

In meantime, please go to our site, watch our video, and join us to stay in touch.

Feel free to contact us with comments and suggestions below. We love your input. Every opinion and insight is greatly appreciated.

Thank you for your continuing support. Happy thoughts, love and light to all…Susan Z.

CONTACT US:

The Angelina factor

Here is a great post from my friend Tami who has MBC (Metastatic Breast Cancer). What I love most about Tami is while she knows the realities of this disease, she continues to inspire as she shares stories about hope on her blog as well as her award-winning book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.

I was also sorry to hear about Angelina’s Aunt who died from MBC. Because there are 113 deaths a day from MBC in the US alone, you can also read an incredible Tribute to Maria Wetzel who also died from MBC the same day as Angelina Jolie’s aunt.

We must do everything to continue research that will help those with metastasis stay alive, while we work on ending this terrible disease.

The Pink Fund

Now that some time has passed, I think I can discuss this in a rational manner. There have been varied reactions to Angelina Jolie’s descision to have a double mastectomy after testing positive for the BRCA gene mutation, a hereditary factor affecting a five percent of breast cancer and 10-15 percent of ovarian cancer cases. The cover of People magazine calls it a brave and heroic act. Others call it self-serving and drastic. I just read an article in the Boston Globe, which criticized her for having the wealth and beauty to afford such an endeavor.

My reaction? Sheer anger and frustration. I bristled at all the attention and admiration bestowed upon Angelina, when in contrast I feel the real heroes are the women facing metastatic (stage IV) cancer who  garner little publicity, and worse, funding. I felt furious that so many wonderful women and men, many of them young…

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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.