I am a two-time breast cancer survivor who found myself in a very difficult situation after I was given a course of treatment by my oncologist that was determined by a set of statistics based upon other patients of the same age who had the same type and stage of cancer. The consultation consisted of his reading and then handing to me the information as printed out from a generic website. As I could not imagine myself being set on a course of chemotherapy, radiation and hormone therapy solely based upon statistical data of others, I was very uncomfortable. Therefore, I decided to do some research for myself but since this was more than a decade ago, I couldn’t find anything other than what he had given me. So, I asked for a referral to a second oncologist who tested my actual cancer and we jointly determined my treatment course together. From my experiences, I chose to become a cancer patient advocate by providing information from and inspiration to others by way of my letlifehappen.com blog site. This has consisted of a weekly blog post for more than 11 years, enhanced for the last 6 years with a daily posting of an “In the News” item about current information from the world of cancer that is shared worldwide through social media. And now, as a result of my efforts to help a patient find information about a clinical trial, I found it necessary to start a second daily feature titled “Clinical Trials” in November, 2018 to bring a new layer of information and help to those who wish to participate in this most important drug approval process. And this group also includes a growing number of patients who are being turned away from treatment with words like “ there is nothing further that we can do to help you” when their oncologists have neither the time nor the disposition to further assist an individual. My goal is to empower patients and their caregivers and families and friends with knowledge about all aspects of care and treatment from diagnosis to forever. This allows for selecting the best course of action for everyone involved and to empower patients to take control of their lives so that they feel a sense of confidence in what they are undertaking. With successful doctor/patient interactions and conversations and the confidence to seek a second or third or fourth opinion until everyone is satisfied that a selected course is the best option, a better outcome will result on both a physical and psychological level and that is everything. I believe that it is time that we start to treat the patient and not just their disease. And by additionally providing information about support programs available to help a patient and their helpers and supporters at all levels, everyone knows that they are not alone and that there is a whole network of others there for them when and if they choose to seek such help.
Sherman Oaks, CA
Barbara is a fierce advocate for women facing or surviving breast cancer. Her research and advocacy helps thousands that are going down that path. — Greg
I’m a Patient Leader