How to Advocate for Yourself with Your Oncologist & Precision Medicine

•Get better outcomes : The more you understand about precision medicine (treatments that are selected because of your unique cancer profile), the better you can partner with your healthcare team to ensure you receive the most personalized and comprehensive care possible. Numerous published studies across cancer types have demonstrated that a patient with a genetic mutation, treated with a drug that selectively targets that mutation can result in better response and improved survival compared to standard chemo when given at the right time. Precision medicine uses genetic and molecular test results about your cancer to guide your treatment decisions toward targeted therapies or clinical trials that may be more effective.

•Avoid missing opportunities : Without this knowledge, you may not realize there are additional testing or treatment options beyond the standard of care that your doctor initially recommends. Advocating for comprehensive genomic profiling of your cancer can uncover actionable mutations that could personalize your treatment.

•Have agency: Staying informed about the latest advances in tests and treatments empowers you to have more informed discussions with your doctors about the best care plan for your unique cancer and occasionally tip the balance to favor your preferences. How can you build your confidence to engage in your cancer care decisions?

•Educate yourself: Educate yourself about your disease and testing and treatment options, and bring your questions and ideas to your doctors. Feel empowered to ask questions and express your needs.

•Ask questions: Don’t be afraid to make sure you understand as much as you can about the testing and treatment decisions that are being made. Also ask your doctors for educational resources they may have of genetic and genomic tests that may be useful for you.

•Advocate for tests : Get frequent testing. Research whether novel tests, like liquid biopsies, transcriptomics, or proteomics, might be useful for you. Persistently request relevant testing. Even if your doctor is unfamiliar with the test, you should continue to advocate for tests that could inform your care, like comprehensive genomic profiling or liquid biopsies.

•Find a consultative doctor : Find an expert in your specific disease, preferably at a cancer research center, who is willing to partner with you. Some community hospitals have a relationship with cancer research centers and can either refer you to a specialist, or consult with them virtually on your care.

•Connect: Connect with other patients through patient communities. What questions should you ask your doctor? General

•“Could you please explain those complex terms in simpler language?”

•“My understanding is [X], is that correct?”

•“What are the consequences of my diagnosis for my family members?”

•“What is driving my tumor growth?” Testing

•“What additional tests should I get to possibly identify new treatment options, personalize my care, and help guide my treatment?”

•“Can I get a comprehensive genomic profile?”

•“Is a liquid biopsy an option for me?”

•“Why is biomarker testing needed?”

•“How will the test be done?”

•“What is the cost of the test?” “Is the test covered by insurance?”

•“Can I get a copy of my test report?”

•“How frequently should I get tests?” Treatment

•“Are there alternative treatment options (besides the standard treatment)?”

•“Can I get a second opinion on my diagnosis and treatment plan?”

•“Under what circumstances will you change treatment if current options are not effective?”

•“Should I consider clinical trials?” Madison) Treatment

•“Should I consider clinical trials?”

•“How can I find clinical trials that would be relevant to me?”

•“Will the treatment you are proposing hurt my chances of responding to future treatments or preclude me from accessing future treatments?” How can you learn more about advocating for yourself?

•Follow up with Rome Madison to learn more about his podcast "Genetics for Healthcare" and the resources he provides for patients.

•Contribute to a directory of recommended doctors and specialists that cancer patients can reference.

•See our many discussions with “citizen scientists” who have educated themselves about their testing and treatment options and advocated for their best treatments, such as:

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•The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Meeting Notes KEYWORDS Precision medicine, self-advocacy, genetic testing, cancer care, molecular assay, patient empowerment, liquid biopsy, clinical trials, germline genetic testing, diagnostic pathways, oncology, healthcare providers, patient advocacy, innovative therapies, genetic insights. SPEAKERS Rome Madison (64%), Roger Royse (13%), Cindy Ness (7%), Rick Davis (6%), Chris Apfel (6%), Robb Owen (2%) CHAT CONTRIBUTORS David Plunkett, Chris Apfel, Ari Akerstein, Brian Kane, Rick Davis, Hazel, Ryan Ramanujam, Roger Royse SUMMARY Rome Madison, President of Genomic Selling Solutions, discussed the importance of self- advocacy in precision medicine. He emphasized the need for patients to ask detailed questions to their doctors, such as understanding complex terminology and requesting comprehensive genomic profiles. He shared his personal experiences, including his mother's struggle with mental health and his father's colorectal cancer survival. He highlighted the role of liquid biopsies and minimum residual disease (MRD) testing in cancer care. The discussion also touched on the challenges of accessing innovative therapies and the importance of patient advocacy in driving better healthcare outcomes. OUTLINE Rome Madison's Background

•Rome Madison, the president of Genomic Selling Solutions, led a discussion on building knowledge around precision medicine and self-advocacy.

•He has many years of experience in the diagnostics industry.

•His current podcast: “Genetics for Healthcare: A Podcast for Patients, targets people who are battling genetic diseases like cancer, cardiovascular disease, sickle cell, and other rare conditions

•During a period of unemployment, his mother struggled with mental health and homelessness which led him to a season of self-discovery and fortuitous events that led to his career in precision medicine.

•During the year he was unemployed, he got an opportunity to interview for a job with the first molecular oncology company offering tumor testing. For three months he taught himself by studying in bookstores and medical libraries before he secured one of ten sales regions at Oncotech, the 1st of its kind precision medicine test.

•His father was diagnosed with colorectal cancer, which further motivated him in his career. Rome's Experience with Precision Medicine

•Rome gathered extensive experience in the operating room, watching tumor resections and working with oncologists, pathologist, radiologist and surgeons to apply genetic insights to cancer care.

•His own father was diagnosed with colon cancer, and because he already worked with the surgeon and hospital system, he was able to be in the surgery and follow the tumor tissue as it exchanged hands through surgery and hospital pathology where the diagnosis was made and biomarker and genomic tests were ordered. His father was successfully treated and is a 20 year colon cancer survivor, which has solidified his belief in the potential of precision medicine to cure or manage cancer.

•Healthcare providers need to go the extra mile to ensure patients understand their care and the role of self-advocacy.

•The goal of his podcast is empowering patients and their families to be effective partners in their care. Questions to Ask Your Doctor

•Rome shared questions from his podcast interviews with patients and experts, aimed at helping patients advocate for themselves:

•“My understanding is [X], is that correct?”

•“What additional data could I get to personalize my care and what additional tests might help guide my treatment?”

•“Are there alternative treatment options?”

•“Should I consider clinical trials?”

•“Why is biomarker testing needed?”

•“How will the test be done?”

•“What is the cost of the test?”

•“Is the test covered by insurance?”

•“Can I get a copy of my biomarker test report?” Challenges and Solutions in Patient Advocacy

•Cindy Ness raised concerns about the current healthcare system's ability to support patient advocacy and the need for better-informed doctors.

•Rome acknowledged the challenges but emphasized the importance of starting a dialog with doctors to ensure they are partners in patient care.

•Roger Royse shared his experience of having to advocate for himself to understand his proteomics report and the importance of persistence.

•Rome and Roger discussed the variability in testing and the need for continuous advocacy to ensure patients receive the best care. Discussion on Liquid Biopsies and Nutritional Advocacy

•Rick Davis and Rome discussed the importance of getting to a center of excellence for better treatment and the need for frequent testing in certain diseases.

•Rick emphasized the role of educated patients in getting better treatment and the importance of liquid biopsies in monitoring disease progression.

•Robb Owen asked about the role of nutritional and supplemental approaches in cancer treatment, and Rome shared his wife's perspective on naturopathic care.

•Rome and Chris Apfel discussed the benefits of liquid biopsies and the need for more advocacy to ensure doctors are familiar with and willing to use these tests. Next Steps

•Cindy Ness suggested creating a repository of doctors who are knowledgeable and supportive of patient advocacy, and Roger acknowledged ongoing efforts to develop such a resource.