“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!”
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.
GCI recently hosted a Global Tumor Board Special Session on genetic profiling for metastatic breast cancer, led by Dr. Ben Park from Johns Hopkins and Dr. Aditya Bardia from Massachusetts General Hospital. Genetic profiling is a way to analyze patient tumor samples and analyze on a molecular level the alterations that are unique to different tumors. A new and exciting field, the goal of genetic profiling is to create targeted therapies for cancer patients, based on their unique genetic sequence.
While this technique has great potential for advancing the field of cancer research, its benefits may not be accessible for most cancer patients in low- and middle-income countries (LMICs):
First, genetic sequencing is very expensive, with single tests ranging from $3,000 to $5,000 for a single patient. The final cost increases from there when considering the price of the personalized treatment plan that results from the genetic analysis. This price tag is too high for most, especially for patients who can barely afford standard cancer care.
Second, sequencing requires efficient and streamlined laboratory networks – samples need to be collected and delivered to the lab within hours, and the sequencing itself requires advanced tools and techniques. For many fragmented health systems with few resources, this may be too tall an order.
Finally, even clinical trials – one way many disadvantaged cancer patients are able to receive at least some sort of cancer therapy – may be largely inaccessible for patients in LMICs in this case. The majority of genetic profiling clinical trials are likely to be remain in high-income countries due to the aforementioned barriers in LMICs.
So, is there anything that can be done to share the technological advances of the U.S. and other wealthy nations with the millions of cancer patients in LMICs? Of course, over many years these genetic profiling techniques will get older, become cheaper as newer techniques are developed, and make their way to lower income countries (this happens with many things: TVs, iPhones, and even cancer therapies considered “old school” in the U.S. that have become more mainstream in LMICs.)
Rather than sitting back and waiting for this day to come, Dr. Park said that there a few promising paths that can be considered now:
- Technology: Currently, “next generation sequencing” (or “NGS”) requires expensive machines and materials. But technology is getting better, faster, and cheaper. Dr. Park imagines that, in the future, we could see “portable kits” for community oncologists to use to sequence quickly, easily, and for low costs. In fact, several companies are continuously updating both their hardware and software – technologies are on the horizon where sequencers may even be plugged into a USB port.
- Education: Educating community oncologists, both in the U.S. and in LMICs, is another important and inexpensive way to progress the field and start building capacity for when the technology does become available. Lectures, like this one hosted by GCI as part of our Global Tumor Boards, are a good first step, but a more systematic approach is needed to help oncologists understand and interpret genomic tests, information, and how they can help guide therapies.
- Philanthropy: Philanthropic organizations could support the creation of a “pipeline” whereby patients’ tumor samples can be processed and shipped from LMICs to the U.S., analyzed, and the results sent back to physicians.
However, this last point would also mandate that drugs and trials be available for these patients once they get the results of their sequencing, which Dr. Park says is a much more difficult issue. Personalized therapies are prohibitively expensive and therefore inaccessible to most patients in LMICs (in fact, many personalized therapies are not even covered by insurance providers in the U.S.) So, unless drugs and clinical trials become accessible to these patients – or the pharmaceutical companies bend to allow greater access to high-cost meds for the majority of the world’s population – there would be no utility in making the genetic profiling technology available. Dr. Park concluded, “It has to be an end-to-end solution.”