April 2017 VOL 8, NO 4
← Back to Issue
What I Wish I Knew
What I Wish I Knew When I Was Diagnosed with Ovarian Cancer Responses from an Online Community
Roni Zeiger, MD
Recently, a member from the Smart Patients ovarian cancer community asked, “What do you wish you knew when you were first diagnosed?” The responses ran the emotional, social, and practical gamut from hope, to fear, to life hacks. The comments were real and resonated deeply within the community.
What follows are several quotes from the conversation that our members want to share:
- I wish I knew palliative support can help with the effects of surgery and chemotherapy
- I wish I knew about effective options for managing side effects caused by debulking surgery or lymph node removal
- I wish I knew trials are treatment options, not just last resorts
- I wish I knew it was okay to take a moment to breathe, if necessary, look for second or third opinions
- I wish I knew support groups, in person and online, could help me and my family feel stronger emotionally
- I wish I knew all the unique, beautiful ways to wear hats, turbans, and scarves
- I wish I knew genetic testing—and knowing more about a tumor’s molecular makeup—could impact my treatment options
The intent of this conversation was to help newly diagnosed members in search of knowledge, hope, and inspiration. The responses from Smart Patients members also provide important insights for healthcare providers. By learning from patients about what they wish they’d known, healthcare providers can better anticipate the needs of patients and find new ways to improve the patient experience.
Whether it is a patient newly diagnosed, a long-term survivor, or a family member caring for a cancer patient, there is a community and a conversation waiting to welcome them at Smart Patients. You and your patients can find out more by visiting www.smartpatients.com.
Roni Zeiger, MD, is the former Chief Health Strategist at Google, where he led efforts ranging from Google Flu Trends to Symptom Search. Dr Zeiger earned his MD at Stanford University and completed his internal medicine residency at the University of California, San Francisco. He has served as a clinical instructor of medicine at Stanford University School of Medicine and received a master’s degree in biomedical informatics from Stanford. He is currently the CEO of Smart Patients and continues to see urgent care patients part time at Santa Clara Valley Medical Center, where he is a Community Staff Physician
Sarah Cannon offers integrated cancer services with convenient access to cutting-edge therapies for those facing cancer in communities across the United States and United Kingdom. It is nationally recognized for [ Read More ]
The multitargeted tyrosine kinase inhibitor (TKI) cabozantinib demonstrated encouraging activity in patients with advanced neuroendocrine tumors (NETs), including patients previously treated with sunitinib or everolimus, a preliminary clinical study showed. [ Read More ]