This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Guest Blog: Attending ASCO as a Research Advocate

August 9, 2015

By Robin Karlin

Thirty thousand health professionals, fabulous views of Lake Michigan and downtown Chicago, miles of escalators, fountains and crowded atriums, long lines at every Starbucks, session after session of the latest research and educational panels, and a fun evening at Shedd Aquarium. These were all part of my 2015 American Society of Clinical Oncology (ASCO) experience.

I had the privilege of attending ASCO’s annual meeting in Chicago May 29-June 2. My attendance was the culmination of the Research Advocacy Network’s Focus on Research Scholar Program; the organization’s mission is “… to develop a network of advocates and researchers who influence cancer research—from initial concept to patient care delivery—through collaboration, education and mutual support.”   My participation in the program, which supplemented the training I received via the FORCE Research Advocate Training (FRAT) Program, further expanded my knowledge and understanding of cancer research. As an advocate attending ASCO my personal goals were to achieve a more scientific understanding of the cancers affecting the HBOC community, and to learn about the latest research, the science of clinical trials, and the challenges of enlisting patient participation, health care delivery, and quality of life issues that are important to patients.

When I learned in 2011 that I have a BRCA1 mutation, I felt, as many of us probably do, that I was either the benefactor or victim, depending on your perspective, of a new technology that was not well understood by many medical providers or the general public. I was fortunate to have a genetic counselor who referred me to the FORCE website and a local FORCE group in Pittsburgh that was about to have its first meeting. FORCE’s website, authored by experts, gave me the facts I needed, and the local meetings gave me the face-to-face emotional support and information about other women’s experiences with local medical resources that I was seeking.

At this year’s ASCO meeting, I was amazed at the prominence and centrality of genetics in all of the sessions I attended. So much has changed, even in the four years since my BRCA testing.

Multi-gene Panel Testing, Data Ownership, Incidental Findings, Returning Results
Mark E. Robson, MD, presented “The Philosophy of Technology Adoption: Multi-gene Panel Testing.” He discussed the pros and cons of multi-gene testing, concluding that this technology is here to stay even though it is not yet standard of care. Some of the many challenges of multi-gene testing are: selecting which genes to include in the testing, knowing which variants are important, and the lack of clear guidelines identifying which genetic results indicate an increased risk for disease. Some patients who have broad panel testing receive results that impact their health—these results would not have been found otherwise. Dr. Robson explained, however, that the “challenge is to define how many people have to benefit in order to confirm clinical utility for the strategy.” Potential harm for medical decisions made in the absence of sufficient evidence is also an issue: some panel tests include genes for which the increased cancer risk is not well understood, and for which no national guidelines exist to help health care providers and patients make risk management decisions.

In his talk on “Informatic Strategies to Turn Sequence Data into Cancer Patient Management,” Eliezer Mendel Van Allen, MD, presented a rationale for going beyond targeted panels to broader whole genome sequencing. A major challenge is the enormous increase of patient data a doctor must understand: from about 10 data points in 2003 to over 100,000 data points in 2014. Nevertheless, Dr. Van Allen proposes that for cancer patients, we move beyond sequencing just a few genes to sequencing all genes in a patient’s tumor and healthy cells; this allows for discoveries that may help to determine which patients will benefit from new therapies. For example, genetic testing of blood or saliva for inherited mutations (like BRCA) is now more important for making decisions about cancer treatment. Dr. Van Allen illustrated this point with an example of a gene change that can help predict which bladder cancer patients will or will not respond to cisplatin. His work also includes developing tools that help doctors choose cancer treatments that are known to be most effective for specific gene variants.

William Foulkes, MBBS, PhD, focused on the growing list of known genes associated with increased breast cancer risk. He suggested that TP53, PALB2, and possibly ATM and CHEK2 deserve consideration for inclusion with BRCA1/2 genetic testing for breast cancer risk. However, he stated that certain other genes should not be included because their effects on risk are less understood, and health professionals do not agree on what actions, if any, should be taken when changes in these genes are found.

Wendy Kohlmann, MS, presented the “Role of the Genetic Counselor in Returning Genetic Information.” She described how unexpected genetic results can lead to anger, distrust, denial and lack of follow-up, while expected results often lead to acceptance, adjustment and screening or prophylactic surgery. She stressed the importance of integrating genetic counseling into general medical care, setting expectations of complex results before testing, and using a team approach including follow-up after results are reported.

Treatment of the BRCA Mutation Carrier
Judy Garber, MD, MPH, spoke on screening and surveillance for BRCA 1/2 carriers. One research challenge concerning screening is to show not only that we can detect early cancers, but also that early detection results in improved outcomes for patients. Breast cancer screening should include at least MRI starting at age 25 and alternating every six months with mammograms starting at age 30: studies show that screening in this population detects early-stage cancers. A Chicago medical team is piloting a project involving women with mutations who receive an MRI every six months—more research will be needed to persuade insurance companies to cover this type of screening. Three-dimensional mammography, also known as tomosynthesis, may be more effective for screening women with dense breast tissue. Dr. Garber also discussed screening for pancreatic and prostate cancers, both of which are associated with BRCA mutations. New screening technologies are available for pancreatic cancer, but data showing a survival benefit from the screening does not yet exist. Endoscopy is the most accurate technology, but it is also invasive. The CAPS-5 Study in the U.S. is an ongoing effort involving pancreatic cancer screening.

Prostate cancer screening also has challenges. PSA screening in men detects many benign or localized tumors that may not require treatment. However, treatment has many side effects, including short- and long-term urinary and sexual issues. For this reason, PSA screening is not recommended for men in the general population. Mutation carriers are more likely to have lymph node involvement, higher Gleason scores, distant metastases, and worse survival outcomes than the general population. Recent data shows that 20% of men with high-grade prostate cancer are mutation carriers—BRCA1 carriers have a 1.8- to 4.5-fold increased risk of developing prostate cancer before age 65; BRCA2 carriers have a 2.5- to 8.6-fold increased risk. NCCN guidelines suggest that men with BRCA1 mutations consider prostate screening at age 40, and that men with BRCA2 mutations begin prostate screening at that age. The IMPACT Trial is studying better early detection markers for prostate cancer to determine whether PSA screening is more accurate for mutation carriers.

Elise C. Kohn, MD, spoke about research on PARP inhibitors to treat cancer in BRCA carriers. Unlike chemotherapy drugs, PARP inhibitors work by disabling a tumor cell’s ability to repair damage to its own DNA, while leaving healthy cells intact. DNA-repair inhibitors, such as PARP inhibitors and newer drugs including ATR/ATM inhibitors, are showing promising results. More research is needed to identify who will best respond to these treatments, optimal timing for the agents, and how to combine different drugs to improve outcomes and minimize side effects.

New Trial Designs for Targeted Therapies
Several talks described new clinical trial designs, which have been developed for use with targeted therapies. One example is an “adaptive enrichment design,” a study that allows scientists to measure benefits of therapies that affect fewer people who are identifiable by some biomarker measure. Sumithra J Mandrekar, PhD, explained “umbrella trial designs” that focus on a single tumor type; all potential participants are screened for certain biomarkers and then referred to the appropriate arm of the study based on their biomarker results. Basket trials, as described by Suzanne Eleanor Dahlberg PhD, are an efficient way to screen multiple drugs across many patient populations; treatment focuses on genetic abnormalities in the tumor, regardless of the organ or location of the cancer.

Attending these scientific talks at ASCO gave me hope for better cancer treatments and cures in the future. My hope is tempered with caution because I also learned more about the unbelievable complexity of the human body. Now that I have heard many brilliant scientists report on their research I am eager to contribute to this effort as an advocate. Some examples of how research advocates can participate are: bringing patient concerns to the research community, advising researchers on whether their clinical trial designs will be acceptable to patients, and encouraging the patient community to enroll in clinical trials for which they are eligible. If you would like to learn more or get involved in research advocacy, please see the FORCE Research Advocacy Training Program (FRAT).


Robin Karlin discovered that she carries a BRCA mutation in January 2011. In her newly discovered role as a previvor she chose to have prophylactic surgeries and to become active in the BRCA community. Ms. Karlin is a Peer Support Group Leader for Facing Our Risk of Cancer Empowered (FORCE) in the Pittsburgh area. FORCE is a national nonprofit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. Ms. Karlin also serves on the steering committee for the PCORI-funded ABOUT Network, which is “the first-ever patient-powered research registry created and governed by and for people affected by HBOC.” More recently, she has joined the Women’s Cancer Research Center (WCRC) Breast Cancer Research Advocacy Network (BCRAN) whose mission is to build a partnership between breast cancer survivors, co-survivors and scientists to accelerate the progress of cancer research. In her day job Ms. Karlin is a Principal Systems Software Engineer at Carnegie Mellon University. She has a BA in Linguistics from the University of Chicago and an MS in Computer and Information Science from the University of Pennsylvania.



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