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Young Women with Breast Cancer: New Data Reveals Important Trends

At two cancer hospitals in Mexico, Dr. Cynthia Villarreal and her team have been hard at work collecting data from the many young women with breast cancer they see every week. Women with breast cancer in Mexico are diagnosed, on average, one decade younger than North American and European women, and Mexico has a large proportion of breast cancer patients who are under the age of 40. This trend exists in many other low- and middle-income countries (LMICs), as well.

 

Despite this high burden of breast cancer among younger women in LMICs, their specific needs — clinically, psychologically, emotionally, and logistically — are not studied or addressed in a systematic way. That’s why Dr. Villarreal and her team have been working with GCI to collect data from their patients: We want to understand the unique characteristics of young women with breast cancer and design tailored interventions to address the obstacles they face.

 

The Young Women’s Breast Cancer Database was rolled out as part of Dr. Villarreal’s program in Mexico for young women with breast cancer called “Joven y Fuerte”, or “Young and Strong”. The initial results of the database were presented at the San Antonio Breast Cancer Symposium in December 2016. Here are some of the most interesting pieces of data from this initial analysis, and why they’re important:

  • 25% of the women are childless: This statistic is important for two reasons. First, it shows that 25% of these young women may still want to start a family, a goal that can be jeopardized by the physical effects of harsh cancer treatments. Second, it tells us that 75% of these women already have young families who will be greatly affected by this life-threatening disease. This highlights the need for conversations and resources regarding fertility preservation, as well as the importance of tailored psychosocial support for these women and their families.
  • 52% did not have higher education: Breast cancer is a complex disease that is difficult to understand, even for the most well-educated people. Patients lacking any sort of higher education may have additional obstacles in understanding their disease and have fewer resources for overcoming those obstacles. It highlights the potential need for tailored health education interventions and additional resources, such as support groups.
  • 90% came to the doctor with a self-detected mass: Many women in the U.S. find out about their breast cancer through a mammogram, before they or their doctor can even feel it. Typically, by the time a woman can feel a lump herself, her cancer has grown into a much more serious disease. The fact that nearly all of these women could feel a mass themselves is a startling statistic, and it calls for efforts to increase awareness about breast cancer in the general public and among primary care providers, as well as efforts to improve times to diagnosis for these patients, so they can be treated as soon as possible.
  • 53% were diagnosed with Stage III or IV disease: In the U.S., 60% of women are diagnosed at an early stage of disease, when breast cancer is much easier to treat and patients have the highest likelihood of long-term survival. However, we see here that more than half of these young women in Mexico are diagnosed at later stages of disease, which again calls for efforts to improve awareness and reduce health system delays, so these women are able to recognize and get help for their disease as quickly as possible.

In addition to clinical data, we are also collecting information about quality of life, family history of breast cancer, sexual function, and psychosocial characteristics of these women to get a full picture of their disease and its context. We plan to expand the database to Brazil, Panama, and Peru in 2017, and the findings will inform culturally tailored interventions to address the unique needs of these women and help improve breast cancer care in Latin America and beyond.

 

Dr. Eduardo Paulino Discusses His Global Cancer Fellowship

Dr. Eduardo Paulino from Rio de Janeiro, Brazil, served as a 2016 GCI Global Fellow from June to December. Throughout his Fellowship, Eduardo participated in all of the projects we do here at GCI, from leading research publications on cancer control in Brazil to helping design projects that will help patients in his home country and beyond. Eduardo has been a fantastic and energetic addition to our GCI team, and in the last few days of his Fellowship, I was able to speak with him about the projects he has been working on with GCI, his time in Boston, and his goals upon returning to Brazil.


 

1. Could you tell us a little bit about your background, your work as an oncologist, and what you do in Rio? 

I’m a medical oncologist, dedicated specifically to treating gynecologic tumors. I work in the department of Gynecology Oncology at the National Cancer Institute (Hospital do Cancer II) in Rio de Janeiro, Brazil, which is a public cancer institute. Most of my patients are under-resourced and have some serious obstacles when they try to access high-quality cancer care. In my hospital, we are able to provide public care for all women with the best evidence-based practices, which is a very rewarding environment to work in.

 

2. Do you like Boston? How has your experience been in our city?

Boston is an amazing city, and it has been a great host. I have had no problems at all (if you don’t count apartment hunting…) Wherever you are, you always have access to markets, drugstores, gyms, grocery stores, etc.  The city is also very welcoming to foreign students and tourists, with so many schools, hospitals, and things to do. All of the Bostonians that I have met are very friendly and helpful.

 

3. What has been your favorite experience in your fellowship so far?

My favorite experience in my fellowship has been the opportunity to share my ideas and have them taken into account. The interaction with my mentors was very fruitful, and I believe that both sides benefited from collaborating together. It is great to work with so many different people and to meaningful contribute to projects that will change the landscape of cancer care for patients in my country.

 

4. What kinds of projects are you working on here with Dr. Goss and GCI? What projects or ideas are you most excited about sharing with your colleagues and starting at your hospital when you get back to Rio de Janeiro?

My projects with Dr. Goss and GCI are based on the barriers that patients in low- and middle-income countries (LMICs) face when trying to access quality cancer care. We believe that the first step is to find these obstacles and create plans to overcome them, in order to better serve cancer patients in under-resourced countries. GCI’s patient navigation programs and prospective databases are the most exciting projects that I would like to implement in my hospital. GCI already has a global database for young women with breast cancer, but since I specialize in gynecologic oncology, I helped to design a cervical cancer database, so we can begin to learn more about the treatment choices and outcomes for women in Brazil and elsewhere who are suffering from this disease. It will be very exciting to implement this database with my own patients and contribute to a global body of data that will help us help women around the world.

 

5. What do you think will be your biggest take-away or lesson-learned from your time here at GCI?

Multidisciplinary work! Here, I really got to experience how important it is to engage in multidisciplinary teamwork–taking into account everyone’s opinions, respecting everyone’s experience, and maximizing our impact with the best approach. This pattern of working with multidisciplinary teams is one of GCI’s key goals, and it is used in patient care, as well as any kind of research project the group performs. By engaging the right people and various experts in the field, we are able to make the best decisions possible for our patients.

 

6. What advice would you give to young oncologists, doctors, or students who are thinking about getting into public health or cancer research?

That is possible to make a difference! Public health, especially in LMICs, is challenging. When you hit your first obstacle, don’t give up because there will be many more ahead. With continuous effort, you do have the ability and power to change patient care (whether that is by treating individual patients, improving screening practices, connecting a patient to other services, providing palliative care, or even finding a cure). Believe in yourself!

 

End-of-Life Care in Latin America

Mapping Our Global Tumor Boards

Extended use of aromatase inhibitors for breast cancer therapy is both beneficial and accessible

On June 5, 2016, Dr. Goss gave a plenary lecture at the ASCO Annual Meeting on a groundbreaking clinical trial he has been leading for some time. The trial found that extending the use of aromatase inhibitors for breast cancer therapy can reduce the risk of breast cancer recurrence and decrease the chance of a new cancer forming in the other, healthy breast.

 

The ASCO selection committee chooses its plenary lectures based on their direct clinical application. From a review of 5,400 abstracts they select four most likely to change clinical practice. The trial under Dr. Goss’ leadership, called MA.17R, was selected as the number one trial for presentation at the world meeting, and the results were published in the prestigious New England Journal of Medicine.

 

In recent years, Dr. Goss has shifted his research priorities from discovering new breast cancer clinical therapies in the developed world to helping underserved patients in low- and middle-income countries (LMICs) across the globe.

 

Dr. Goss emphasizes that, unlike many cancer therapies, aromatase inhibitors are widely accessible – most are off-patent and, therefore, relatively inexpensive. “New targeted therapies, immunotherapies, and advanced genetic testing are scientifically exciting, but prohibitively expensive for most of the world’s population. Most money for cancer control is spent in high-income countries. Since 86% of funds spent on cancer control globally are spent on only 6% of the world’s population, people in LMICs do not benefit from these scientific advances. Patients from these populations would benefit more from enhanced access to simple, ‘bread-and-butter’ medicine,” Dr. Goss says.

 

Several years ago, after the global success of his original MA.17 trial, Dr. Goss traveled extensively around the world presenting results from the trial. Somewhat to his surprise, young doctors in LMICs approached him by the dozen asking to train with him, publish with him, and learn from him. They wanted to improve the state of clinical care and research in their countries, but they were always met with resistance by shortage of funds or lack of opportunity.

 

Dr. Goss realized that the true solution to global cancer control is not necessarily to cure cancer – which is undoubtedly important – but to help patients from underserved populations to access resources that have existed for many decades in the developed world. His chief mission is to improve the survival and quality of life of underserved cancer patients worldwide and thus he has founded the Global Cancer Institute.

 

So although the presentation of the MA.17R trial was a departure from his current daily focus, Dr. Goss recognizes that all patients with breast cancer – regardless of socioeconomic background – stand a chance to benefit from the results of his latest scientific research.

How a Breast Cancer Database Helps Young Women Around the World

“I was 36 years old when I first felt the lump in my breast,” Diana remembers. “I had been married for three years, and we had been trying to have a baby for two of those years.”

 

Breast cancer in very young women is considered a rare disease. When you look at the global population of breast cancer patients, those who are under 40 years of age represent a pretty small proportion. But when you zoom in on specific regions of the world, the picture changes a bit: breast cancer in young women is much more common in low- and middle-income countries (LMICs), compared to developed countries.

 

“We tried unsuccessfully to have a baby for two years, so we were about to visit a fertility specialist when I felt the lump.” Diana was eventually diagnosed with Stage III breast cancer and her doctor recommended chemotherapy and radiation therapy. “I was devastated because I thought that the chemotherapy would prevent me from ever becoming pregnant.”

 

Reproductive and sexual health are just some of the many facets of a young woman’s life that are affected by a diagnosis of breast cancer. She may have young children to care for, parents to support, and a full-time job to pay the bills. Although a breast cancer diagnosis is devastating for any individual, the costs to family and society are greater when such a young patient is affected.

 

However, despite the higher burden of this disease in LMICs, the needs and concerns of these young women – and even the unique characteristics of their disease – are not well known or addressed.

 

That’s why Dr. Cynthia Villarreal decided to start a Young Women’s Breast Cancer Database to collect important information – everything from quality of life and psychosocial factors to fertility and clinical characteristics – from this unique and understudied patient population. This way, we can begin to understand how to better help and empower young women with breast cancer throughout their treatment, recovery, and life afterwards.

 

The database is comprised of several different questionnaires that young women can fill out on tablets while they’re in the waiting room before an appointment. Cynthia implemented these questionnaires as part of a program she initiated at her hospital, which connects these young women to the resources they need to understand fertility-preserving options, learn about important genetic testing, and access community services and support groups.

 

“I thought that after chemotherapy, I could never become pregnant in my life, and I was devastated,” Diana explains. “However, when I visited my oncologist, she explained that there were several options we could try to become pregnant in the future. She referred me to a fertility specialist.”

 

Cynthia’s project is starting in Mexico, but she is working with us here at GCI to make the breast cancer database go global. With more women participating in this effort, we can collect more data and understand even more about how breast cancer affects young women around the world. Are there aspects of the disease that are common to all young women? Are there regional or ethnic trends in how the disease presents itself? What risk factors predispose certain young women to breast cancer? What are the most important resources to provide to young women with breast cancer?

 

All of these questions and more will help to clarify this complex and devastating disease, and will allow oncologists like Cynthia to better serve and support their patients. By expanding the global reach of the Young Women’s Breast Cancer Database, we are expanding the amount of knowledge we have at our fingertips and our ability to understand the plight of young women with breast cancer about the world. This way,  GCI can help patients like Diana access important resources that will improve not only their breast cancer outcomes, but their quality of life.

 

“I am so grateful that my oncologist and her team were concerned about my fertility, understood my concerns, and were able to refer me and my husband to someone who could help. Thanks to this, I am optimistically fighting my cancer and excited about my future possibilities of pregnancy!”

 

Accessible Technology Platform Connects Global Doctors

The Global Cancer Institute (GCI), a 501(c)(3) public charity, has a mission to improve the survival and quality of life of underserved cancer patients worldwide. It’s an ambitious goal, but GCI is accomplishing this by connecting a network of global oncologists through an integrated and easily accessible technology platform: Google.

 

GCI unifies its global projects on the Google platform, utilizing the resources offered by Google for Non-Profits. Google allows GCI to connect substituents via Google Apps. Google Apps is HIPAA-compliant, which is an important capability since GCI works with health data and adheres strictly to HIPAA standards. Google’s HIPAA compliance ensures that GCI’s data remains protected, even within this cloud-based technology platform.

 

Some of the key Google Apps products that assist GCI in meeting its goals are as follows:

 

Google Drive allows GCI to give access to shared documents to their global network of doctors through a single platform, which is particularly  important considering GCI’s network of over 350 doctors in more than 20 countries around the world. Google Drive allows GCI to control multiple folders and documents and thereby effectively manage and control all of its global projects with many constituents.

 

Google Hangouts is a videoconferencing tool that allows GCI to connect an unlimited number of viewers to participate in our Global Tumor Boards – live, doctor-to-doctor meetings that allow discussion and collaboration on complex patient scenarios from around the world. It is an extremely valuable educational tool and offers the opportunity for doctors to collaborate and learn from each other – even from different continents.

 

Google Forms provides a simple way to create patient questionnaires, activity tracking logs, and clinical surveys, which help collect important data for many of GCI’s projects.

 

Google Sheets acts as a back-end for the data collection that happens through Forms, functioning as an easily shareable spreadsheet that updates in real-time as data is gathered from around the world.

 

Google Extensions, like AppSheet, expand the capabilities of the Google Apps. AppSheet is a tool that converts the Forms that GCI creates into applications for an iPhone or tablet. This allows patient questionnaires and activity tracking logs to be housed on a tablet’s home screen, easily accessible and user-friendly for both patients and health workers. It also allows use in areas that do not have wi-fi, an important capability in low resource areas. The data is then uploaded to Sheets when a wi-fi connection is established.

 

Google Analytics allows GCI to track activity on their website in order to gauge their audiences, expand their reach, and engage with followers and potential donors.

Dr. Rossana Ruiz Discusses Her Global Cancer Fellowship

Through GCI’s Fellowships and Scholarships, young oncologists from low- and middle-income countries have the opportunity to come to Boston and gain exposure to clinical practices, education, and research in the U.S. They participate in all of the projects we do here at GCI, from leading research publications on cancer control in their home countries to designing access-to-care initiatives to help their patients back home. Dr. Rossana Ruiz is an oncologist at the Instituto Nacional de Enfermedades Neoplásicas, in Lima, Peru, and has been our Fellow since October 2015. Rossana has been such a wonderful and energetic addition to our team here in Boston, and in the last week of her Fellowship, I was able to chat with her about her time in Boston, the projects she has been working on, and the lessons she will carry back with her when she returns to Peru.


 

Alexandra: Could you tell us a little bit about your background and what you do?

Rossana: I am a Peruvian oncologist, and I completed my medical training at the Peruvian National Cancer Institute, INEN. After I finished my residency in Clinical Oncology in 2014, I worked as a medical oncology attending for adolescents and young adults with hematological malignancies for almost a year, which was the most fulfilling and gratifying experience I have had as a clinician. I am fascinated by the challenge of understanding and treating cancer in the young, and, since then, I have been working on projects and publications on this special population of patients. Then in October 2015, I started my fellowship at the Global Cancer Institute.

 

A: How do you like Boston?

R: I am in love with Boston and you know it! This is a great city to live in and enjoy; it is organized, safe, and beautiful. As it is a university city, its population is friendly, multicultural, and highly educated, which I think is an awesome combination. In its streets, authentic history mixes with a youth vibe to create a unique atmosphere. A wide variety of cultural and musical activities await around every corner, at every time, and are accessible for everyone. Plus, it is very easy to get around the city – you can just walk anywhere while admiring the views! Being able to go the Charles River Esplanade just for lunch or just walk through Boston’s amazing parks on a sunny – or snowy – day is something I am definitely going to miss. In fact, as Dr. Goss told me on the day I arrived, a piece of my heart will remain in Boston forever.

 

A: What has been your favorite experience so far in your Fellowship?

R: One of the experiences that I have enjoyed the most is being able to experience real teamwork and being treated as peer for every single project. It is amazing how when people work together, knowledge and unique perspectives blend, and creativity booms to reach a common goal. It has been an honor to work with a network of such intelligent and passionate, yet humble, people here in Boston and around the world! I have had the opportunity to meet so many of these people individually, and it gives me great satisfaction to consider them my colleagues and outstanding role models, but above all, great friends.  

 

A: What kinds of projects are you working on here with Dr. Goss and GCI? What projects or ideas are you most excited about sharing with your colleagues and starting at your hospital when you get back to Lima?

R: I have worked with very talented colleagues under the mentorship of Dr. Goss on various projects, ranging from current clinical topics in oncology to purely public health issues. We designed and conducted a survey to assess the patterns of clinical practice of more than 3,000 breast cancer specialists across Latin America, with the objective of identifying adherence to clinical practice guidelines and its determinants. The results of this assessment will constitute the framework for implementing targeted educational interventions that will aid in improving clinical care. We have also analyzed the worrisome situation of access to high-cost cancer drugs across Latin America and proposed feasible ways to overcome its multiple challenges, all from a physician’s perspective. Currently, we are working on implementing a Patient Navigation Program, as well as a very promising protocol to identify factors that predispose a certain group of young women to a deadly form of breast cancer that is related to pregnancy. Once back in Lima, I am very excited to start working right away on a multicenter database for young breast cancer patients, a highly impactful but understudied disease, more frequently seen in my region of the world.

 

A: What do you think will be your biggest take-away or lesson learned from your time here at GCI?

R: Being in Boston has been a game-changing experience for me. Besides my personal growth, working with GCI has allowed me to take time to analyze the Latin American cancer situation from a wider, mentored perspective. Our problems transcend individual jurisdictional boundaries and are common to the region, and that is why collaboration is so relevant. I learned that along the continuum of cancer care – from prevention to primary treatment and supportive care – there are multiple deficiencies that, when added up, drive the huge difference in cancer mortality between our countries and the Western world. One of the most important take-home messages for me is that every gap or barrier represents an opportunity for improvement. Therefore, each barrier needs to be properly identified, researched, and documented in order to construct goal-driven and evidence-based interventions. In this way, we obtain effective and reproducible solutions that are amenable to be applied to bigger populations.    

 

A: What advice would you give to young oncologists, doctors, or students who are thinking about getting into public health or cancer research?

R: Cancer incidence and mortality is expected to markedly increase in developing countries like mine in the following years. In our everyday practice, health inequities and the deficiencies and weaknesses of our healthcare system (evidenced by the high prevalence of advanced disease in developing countries) just jump out at us. In this setting, a public health perspective cannot be disconnected from the practice of oncology. Research is for sure the first step, and the opportunities are endless and frequently at the patient’s bedside. Doctors and researchers, especially through collaborative networks, are in a strategic position to draw authorities and public attention to our reality and our needs.

Global Tumor Boards Connect Doctors to Improve Patient Care

Jessica St. Louis is the senior program coordinator for GCI and has been with GCI since its inception. Among her many duties, she coordinates Global Tumor Boards: live, online videoconferences that connect doctors from around the world to discuss complex patient cases. Here, Jessica answers some of the most frequently asked questions about these tumor boards and how she works with GCI’s global network to make them happen.

 

What are tumor boards?

Global Tumor Boards are meetings where a multidisciplinary team of doctors get together to discuss complex patient cases. They are not only valuable for patients, who of course benefit from having multiple doctors reach a consensus on best treatment and care, but they are also an important educational tool. They offer an opportunity for doctors to collaborate and learn from each other – even from different continents.

How exactly do Global Tumor Boards work?

Our tumor boards are online videoconference meetings with the ability to host 15 cameras and unlimited numbers of viewers who can watch the meeting. This is unique in that we can connect and communicate with hundreds of doctors at once in real time from our office in Boston! Doctors can also go on YouTube and watch recordings of our previous tumor boards at any time.

Who are the doctors that join tumor boards? Where do they come from?

Doctors who join our tumor boards are from over 18 countries in Latin America, Eastern Europe, Africa, and Asia. In total, our tumor boards have reached over 350 doctors worldwide. The patient impact of Global Tumor Boards is huge, considering that one doctor typically treats hundreds of patients per day.

What exactly do these doctors talk about during the one-hour meeting?

GCI holds monthly tumor boards on breast and gynecologic cancers. In each meeting, we invite hospitals from low- and middle-income countries (LMICs) to present challenging patient cases to a panel of multidisciplinary experts from prestigious cancer centers in the United States, including Johns Hopkins, Stanford University, MD Anderson, and others. Our panel of experts help the doctors reach a consensus on each patient’s treatment. We find that many doctors have similar challenges when providing cancer care in LMICs with limited resources. We discuss these resource challenges as well as GCI’s research initiatives and interventions to improve access to clinical care.

Why does GCI do tumor boards?

Global Tumor Boards are an effective way to improve patient care through doctors. The doctors in these countries often work in multiple hospitals and see hundreds of patients a day without the guidance of their peers. This burden prevents doctors from keeping up to date on clinical practice guidelines.

They are a great way to engage doctors in patient care discussions with their peers – doctors really enjoy talking about medicine with one another! It creates a “beehive effect” where doctors can learn together and build similar levels of clinical knowledge and styles of practice. We also engage the doctors in discussions about how their patient cases relate to “bigger picture” cancer control issues and public health interventions.

Besides that, it is very comforting for patients to know that their cancer is being watched by a team of doctors who came to a consensus about the best step forward.

What kind of technical capabilities are required to be part of a tumor board?

All that’s needed is a computer with a camera, microphone and an internet connection.

How can I join?

If you are a doctor in a LMIC and would like to join Global Tumor Boards, please contact us at info@globalcancerinstitute.org !