When More Tests Don’t Yield More Answers

March 23, 2016
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Personalized medicine, often referred to as precision medicine, is a new branch of medicine that recognizes every patient’s uniqueness and treats him or her accordingly. The unique combinations of genes and DNA that we inherit from our parents, the environments we inhabit, and the lifestyles we lead put us all in different risk groups for diseases. Personalized medicine seeks to treat patients by tailoring their treatments, drug prescriptions, and therapies to what will be effective for them based on who they are and how they live their lives.

Some breakthroughs in precision medicine have been targeted drugs for the HER-2 positive breast cancer—a type of protein found on the cancer cells of many women with aggressive breast cancer—and for abnormal ALK genes that create proteins that allow lung cancer cells to grow and spread.
One exciting forefront of personalized medicine is genetic testing. Genetic testing involves taking a sample of patient DNA and sequencing his or her genome, so that care providers can look for abnormalities or mutations that suggest increased risk for certain diseases or a possible adverse reaction to a certain type of treatment. Alternatively, rather than sequencing a patient’s entire genome, cancer cells themselves can be analyzed for factors that affect tumor growth.

While personalized medicine and gene testing hold a lot of promise—currently genetic tests are able to identify up to one hundred gene mutations, some of which are linked with increased cancer risk—their newness presents some challenges. In fact, Angie Watts, a woman experiencing breast cancer, found her treatment decision-making process more difficult after receiving the ambiguous results of genetic testing according to a recent article by Gina Kolata in The New York Times. Watt’s test results indicated the presence of an altered gene that would increase the difficulty of DNA repair in her body. Her oncologist cautioned her against the radiation treatment she had decided on because of the possibility that her body would be unable to repair its DNA after radiation treatment. He wasn’t certain that her mutation would lead to harm, but he didn’t want to take the risk. Watts sought a second opinion from a professor of genetics and medicine who gave her opposing advice: he advised her to undergo the radiation treatment because her mutation was not known to be harmful. Watts’s medical advisors were not able to reach consensus, and the complicated treatment decision and its inherent emotional strain were left to her to make without concrete medical recommendations. As Watts learned, more testing doesn’t necessarily mean more answers or lead to making a treatment decision simpler.

Watts’s experience with the ambiguities of personalized medicine highlights the difficulties of making treatment decisions and developing a treatment plan, in general, but especially when weighing the costs and benefits of genomic testing. Vicki Kennedy, LCSW and Cancer Support Community VP of Program Development and Delivery recommends that anyone who is facing a significant treatment decision about genomic testing make an appointment with a decision support counseling program: “We need to recognize that deciding to get tested and examining the results can have an emotional and social impact on patient’s psychological well-being and we need to prepare and support them through the process.”

Open to Options® is Cancer Support Community’s decision support counseling program, which allows English and Spanish-speaking patients to call Cancer Support Community’s Cancer Support Helpline (1-888-793-9355) or visit an affiliate location in their area to speak with a licensed mental health professional who has been specifically trained in decision support counseling. This service allows patients to sift through their emotions, concerns, and questions before appointments with physicians and care teams so that patients are less overwhelmed and can make the most of their appointment time. Open to Options focuses on helping patients to prepare a specific list of questions to discuss with their physician. In less than an hour, a trained  counselor can help a patient write down their questions related to situation, treatment or test options, support network, goals and priorities, and overall questions. Patients who complete Open to Options report feeling relief that they got all their questions and concerns written down in one document. Physicians appreciate patients coming to the appointment well-prepared and use the list to work together on finding the best treatment plan for the patient.

While current applications of genomic testing may be mostly helpful to people experiencing lung or breast cancer, people with other types of cancer will soon benefit from genetic-specific treatments in development. When asked what advances in precision medicine would need to be made in order to make genetic testing a better option for more patients, Kennedy replied that clinical trials are key to finding new therapies and conducting more research on gene-specific: “We are at the dawn of a new era in understanding cancer at the genomic level and in getting the right treatment to the right patient at the right time, and clinical trials will get us closer to the greatest benefit for the greatest number of patients.”

For now, gene therapy remains an encouraging treatment option for some individuals experiencing cancer and an optimistic hope for others in the future as more therapies and tests are developed. Understanding these issues can be stressful, but you don’t have to face them alone: get empowered with information and support. Seek out a genetics counselor to help you get fully informed; consider speaking with a CSC Open to Options counselor to prepare a list of questions or for overall treatment decision-making support so that you and your doctor can focus on what is most important to you.

Learn more about the Cancer Support Community’s Open to Options program.