Part 2 of 3 (Julie Gralow and Bettye Green):
Part 1 of 3 (Douglas Yee and Anne Grant):
What is “The Walking Gallery”?
Post by Kathi Apostolidis – Breast Cancer & Patient Rights Advocate
Voluntary Sector Consultant & Health Commentator
The “Victim of the Game” was tucked warmly under my coat when I arrived on freezing Monday evening at the orientation meeting of the patient advocates making the class of the advocacy training ABCS2011. I arrived a bit late so everybody else was seated, I took off my coat and watched the others peek carefully on my back. No one said something, although I felt the eyes of those behind me staring at the artwork on my back.
At the dinner, my neighbour a young lady from Wisconsin, dared to remark that my jacket has a “nice” artwork …I said it’s nice indeed but it’s not the important about it. The important is the message it carries which is “Patients need medicines for treatment and pharma cannot keep patients hostages in their negotiations with the government over overdue debts”. She was surprised, and apparently did not grasp all the implications of the story…. She then moved on to ask whether I had painted it myself, I answered no and that a patient rights art advocllate in Washingto n DC, had painted it for me, she was completely puzzled: a Greek lady wearing a jacket with a specific healthcare message painted by another patient rights advocate in Washington…
The next morning, at the LEAD Project Seminar, another patient advocate, who also paints, asked me “Kathi what’s the painting on your jacket?”, and when I explained “it’s healthcare advocacy artwork and storytelling by patient rights art advocate Regina Holliday from Washington, DC” I saw the surprise in her face. How come, you get connected with an artist advocate and had the jacket painted…The same went on the whole day. In the afternoon we had an IBC-Inflammatory Breast Cancer Meeting, the most strange form of cancer(?), a very difficult disease, at which I had the opportunity to meet in person the famous Dr. Massimo Cristofanilli, about whom I have heard so many stories from my friend and colleague Vassilis and Dr. Naoto Ueno, who was one of the first doctors I had followed on twitter, the well known under his twitter handle @teamoncology .
After the meeting the IBC ladies wanted to know more about my jacket!, we took pictures you may see here. They were excited wearing their white lab robes with the IBC embroidery but thought to mov, embroidery higher up and you guess what: have their own stories painted underneath!
So, I will unveil here the mystery of the artist: Regina Holliday, was just a working mother of two boys, and she and her late husband Fred went through an ordeal: Fred suffered from renal cancer but no one in the ERs he visited had a closer look, they sent him home with aspirin!!!
Regina became a patient rights art advocate out of need to support her husband, even when it was too late!!. She used her talents in art and storytelling for translating into powerful tell-tale art and stories, the individual stories of patients whom she meets at conferences. Her masterpiece is the 73cents in which she transformed her sorrow into the picture of her family tragedy during Fred’s hospitalization.
Wonder what’s the Walking Gallery? c and if you like to see the 107+ jackets pyou painted till now, you don’t need to get dressed and visit an art gallery, it’s here right under your figertips TheWalkingGallery.
Every jacket has its own story and ok I suggest to read them all!!! they are so empowering, written with great empathy and insight that they could, as I have already suggested to Regina, to make a book of them!
The Victim of the Game tells the story of Greek and patients in other countries, hit by economic crisis, who were held hostages of pharma in their negotiations with the government over outstanding debts.
I am proud to wear my Jacket here in San Antonio at the #SABCS and hope next time I come to meet many jackets walking around in this big conference and tell their stories because The Patient’s Voice Can Be a very Powerful Tool”.
“And it don’t matter who you are:
It treats everyone the same.
All you need’s a heart
To be a victim of the game.”
Endocrine Therapy, the Theme for the Day
By Carolyn Charkey, Y-ME National Breast Cancer Organization and 2011 Alamo Scholar.
While there were several SACBS special meetings and sessions today that dealt with other important topics, the primary focus of the main sessions was Endocrine Therapy and issues important to the diagnosis/treatment of ER+/PR+ breast cancer. The Plenary Lecture was given by Eric P. Winer, MD, Dana-Farber Cancer Institute, Boston, MA. He opened the morning general sessions with an enlightened look into the state of treatment, where we are, then a glimpse into the future, what is coming, what we can expect and how what we have learned is propelling us into the future of diagnosis and treatment. In the age of indivisualized medicine, doctors and patients alike can expect change to be the order of the day.
From today forward, a breast cancer patient can expect, not hope, that there will be advances on the plate and on the horizon that will paint a better picture for her future. Today drugs that were developed for one specific use is studied further and the “rules can change.” Presentations throughout the morning highlighted advances that significantly improve overall survival rates with existing drugs and in new combinations. Other highlighted research projects and clinical trials introduced new studies and follow-up reports on earlier studies that also show improved patient outcomes.
During an early morning presentation on cancer genomics, Dr Joe Gray of OHSU Knight Center and Dr. Danny Welch of Kansas University Cancer Center presented a Special Interest Educational Session on the Biology of Breast Cancer and an Update on Metastasis Research. In lay language, they presented to advocates a series of complicated research terms and processes that made the world of research on breast cancer understandable enough to help advocates explain what happens when cells grow and divide into cancerous cells and how the new technologies available to researchers and clinitions has sped up the process of research, detection and treatment, thus offering patients not only hope, but a future.
More later about this day, but remember you can go online after the Symposium is over and find details on many sessions and topics on the Alamo Website, The SABCS Website and the Y-ME Website. Stay Tuned.
Watching #SABCS pass by…
Post by Kathi Apostolidis – Breast Cancer & Patient Rights Advocate
Voluntary Sector Consultant & Health Commentator
I am seated in the sun at the coffee shop of the convention center, sipping coffee and watching the participants crowd pass by….
The coffee shop large glassed area is the best for connecting with people, a young Irish lady share a chair at my table, we soon striked a conversation about the state of healthcare in our countries. She told she is working in Scotland because the opportunities are better for qualified people, because the economy is flourishing, but that the climate is harsh.
The coffee shop is continuously full of Japanese, it seems they are very social people, they have animated talks, contrary to the widely reigning perception of Japanese as a soft toned, not very talkative nation. Today, I also met four of the 39 Greek doctors registered here, among them Prof. Georgoulias and my oncologist Vassilis Venizelos. We had a chat about patient doctor communication, the need for patients to understand that knowledge is power against the disease. We agreed to expand on this conversation in Athens.
It’s getting cold in the coffee shop now, after the sun is gone… the break is over.
My programme at SABCS
Post by Kathi Apostolidis – Breast Cancer & Patient Rights Advocate
Voluntary Sector Consultant & Health Commentator
I used Monday morning, among other, to go carefully through the program and select the presentations I would not miss.
My selections are the following:
Tuesday, December 6
4.00-5.30 Controversies in Breast Cancer
New Technologies in Biomarkert Discovery for the Clinician
6.00-7.30 Challenges in the care of special populations with Breast Cancer
Wednesday, December 7
6.45-8.15 Career Development Forum >12. Leadership Skills
13. Making the transition to independence
11.30-12.00 Protective Adaptive Responses to Breast Cancer Therapies
12.30-1.30 Medical Economics
1.45-2.15 Breast Cancer and the Environment: A Life Course Perspective
Thursday, December 8
7.00-9.00 Poster discussion: Survivorship
9.00-9.30 Macrophages as novel targets for therapy in Breast Cancer
1.45-3.15 Environmental Exposures, Epigenetics and Epidemiology
3.15-5.00 Overdiganosis in Breast Cancer screening: Methodological considerations of current
estimates
5.00-7.00 Poster discussion: Cost effectiveness/utilization and reception
Friday, December 9
7.00-9 .00 Poster Session, Psycho-social, QoL, and Educational Aspects
9.00-9.30 Advances in Axillary surgery: Sentinel Nodes & Beyond
1.45-3.15 The Role and Promise of Neoadjuvant Therapy in Breast Cancer
4.00 The role of hospital factors, physician factors and type of health insurance on receipt
of immediate postmastectomy reconstruction in young women with breast cancer
5.00 Poster Session: Psychosocial,. QoL, & Educational Aspects
Saturday, December 10
8.00-10.00 Genome Data for the Masses: Presentation of TCGA and IGC Breast Cancer Tumor
Data
10.00-12.00 The Year in Review
What are your choices? Why have you chosen specific presentations? Let’s exchange views…
Project Advanced Topics Session Opens Advocacy Learning
By Carolyn Charkey, Y-ME National Breast Cancer Organization; Alamo Breast Cancer Foundation 2011 Scholar
Prior to the opening of the 2011 San Antonio Breast Cancer Symposium, the National Breast Cancer Coalition’s (NBCC) Project LEAD Advanced Topics Session was opened by Steve Shak, MD of Genomic Health gave an overview of the opportunities and challenges of developing and using diagnostic tests to guide treatment decisions for cancer patients.
He reminded the advocate attendees at the Project LEAD session attendees of the necessity to advance the understanding and treating the underlying biology across the continuum of the disease to improve the diagnostic tests and the treatment of breast cancer patients. Pointing out that during the 20th century we moved rapidly forward in the field of genomics so that in the 21st century we are truly advancing into the age of personalized medicine. This will be demonstrated during this meeting as announcements are made about new diagnostic tools and the results of Phase I, II, II, and IV clinical trials and research studies that show the benefits to patients of the increasing rapidity in the improvement of diagnostics and treatment of breast cancer.
At this meeting the Eastern Oncology Group will announce the results of the trial showing the effectiveness of Oncotype test in showing those who can effectively be treated for DCIS with surgery alone, no radiation. The reaction of the breast cancer survivors in the room was energetic applause. Other presentations during the week covering early and advanced research projects will demonstrate rapid pace of advancement in research that is benefiting patients.
Next Pepper Schedin, PhD from the University of Colorado discussed the applications to primary prevention and prevention of metastasis of breast cancer. She discussed the three windows of opportunity for development of breast cancer: adolescence, pregnancy and menopause.
In studying the diet of adolescents during this important phase of their development is showing how the changes in diet can have a preventive effect against the development for the remainder of their lives. It is increasingly evident that raising the intake of fruits and vegetables, especially those with higher vitamin A components is important to lower breast cancer in adulthood…world wide. She highlighted the need for world-wide improvement in diet, starting with changing school diets.
Research on the association of pregnancy and breast cancer has moved forward the understanding of the development of breast cancer and the effect of hormone levels on this process. One study that has moved from animal studies to human trial is the effect of Ibuprofen as a target for breast cancer. This second target of opportunity for breast cancer is now a major focus of breast cancer research. We now know that early age pregnancy has a protective effect for the development of post-menopausal breast cancer. At the same time, increased surveillance is important for 18 months following pregnancy because of the increased number of pregnancy-related breast cancer.
Recent research has shown that the third window of opportunity, menopause, is clearly weight associated. One of the revelations of recent research is the possible benefit of the diabetes drug Metformin in treating menopausal breast cancer. Posters and oral presentations at this meeting will show the spectrum of research on this topic will again show the progress that has been made in focusing on targeting research, prevention and treatment of breast cancer on individual needs, rather than the “One Size Fits All” course that was followed in previous centuries.
The knowledge now is that there are targeted specific windows of the life cycle with tailored interventions that offer a rational approach to breast cancer prevention and treatment research.
A panel, of advocates from the National Breast Cancer Coalition gave an update on the Deadline 2020 Summits this year. Laura Nikolaides, NBCC research and quality care program director, presented information on the Artemis Project, that is in the process of research to develop an vaccine to prevent breast cancer. It was decided that the idea was feasible and the work should proceed as the initial step in the goal to end breast cancer. Meetings also showed that it is necessary to characterize the breast as related to breast cancer and develop a scenario for of trials. What followed was a series of summits.
Alice Yaker and Shirley Mertz, two breast cancer advocates who attended the first summit in Aspen last August, that focused on metastatic breast cancer. They explained the process of the summits, the topics looking at how we can end the process of breast cancer to metastasis, which is when we will reach the goal of seeing no one die from their breast cancer. At the summit attendees, clinicians, scientists and advocates, divided into groups to post the questions for focus as the process of reaching the goal of ending breast cancer by 2020 is reached. They looked at the obstacles on gaining insight into why some breast cancers advance to the metastatic stage. During the summit, the participants agreed upon how little is known about what happens during the end of adjuvant treatment and the progression to metastasis, how much more needs to discovered to move research forward and what is known that can drive current and future research into metastatic breast cancer. It is expected that reports from the summits
These presentations set a basis for advocates who tomorrow will begin their four day adventure in absorbing information on the advances in breast cancer research that are advancing the prevention, diagnosis and treatment of breast cancer.
The long way to San Antonio…
Post by Kathi Apostolidis – Breast Cancer & Patient Rights Advocate
Voluntary Sector Consultant & Health Commentator
I was pleased to be able to apply for the second time this year for a scholarship for the famous and very demanding advocacy training program at SABCS of the Alamo Breast Cancer Foundation.
SABCS-The San Antonio Breast Cancer Symposium is the world breast cancer congress taking place every year in the first fortnight of December in San Antonio, Texas. I said that the program is demanding not because besides excellent stamina to withstand the heavy packed program starting as early as 7.00a.m. and finishing at 10.00p.m. , it requires excellent fluency in English and more than excellent listening skills and of course, a good knowledge of breast cancer terminology and familiarity with diagnosis and treatment.
I was excited about coming here for a second time because what I learnt here and the contacts with other advocates I had during my first SABCS attendance gave a different orientation to my advocacy. I realized how little Greek breast cancer patient advocates have the opportunity to learn, to hear various scientific views and be mentored to critically analyze them, see what is missing, where progress should be made and retain the gist of the many research going on.
San Antonio is usually warm in December around 22-29oC with cooler nights and the weather forecast was a very warm week near the 30ish range. So I packed light woolens as the airco in the convention center is really on the cool side. The problem is that I left, as usual, packing for such a big trip for the very last moment, which of course resulted in forgett
ing more than one of the items I had planned to take with me.. the bigger loss is that I forgot the battery of my camera that I had hooked for reloading..
If one thinks that airplane travel is fast, he has to reconsider because travelling from South Europe to San Antonio it’s a matter of three flights of 19hrs at best but which resuIted to 27hrs due to delays… this made Monday almost miserable due to headache….American Airlines despite their helpful staff, is not the airline I would recommend for a long haul trip! Tiny seats, no place to move, no newspapers, food on the fast food side..plus the change of aircraft, delays in two airports, this is not the best that can happen to a traveler. I had plans to go out and stroll in the city on Monday, practically the only free morning, but I preferred to relax..Besides the weather had completely changed in 24hrs and from 30oC it dropped to 7oC.
In the afternoon, the advocacy training starts with the orientation event. As the word suggests it’s a get together of the advocates, each one presents herself and her work, Sandi Stanford, the Chair of ABCF explains everything in detail so that even newcomers feel at home. We have taken pictures, we have laughed, told stories about what we have done since we met last, discussed our topics. By eight in the evening, my roommate, Liz Whammond from New Brunswik in Canada, who had arrived in the afternoon, and myself were exhausted and did not follow friends in the city for the evening but hope to do so during the week…
Alamo Breast Cancer Foundation Welcomes Advocates!
The Alamo Breast Cancer Foundation, a 501c(3) non-profit all volunteer organization is based in San Antonio Texas. Beginning Monday, we will welcome 41 scholarship patient advocates to the 14th annual Patient Advocate Program. We hope you will check back during the coming week to learn what is happening at the San Antonio Breast Cancer Symposium. This is the largest single cancer symposium in the world, and we are proud to work with SABCS on the patient advocate program.
We will have two advocates blogging throughout the week and also post photos. So hope you check back and stay up to date on what is happening at SABCS!
