Why I Became a Patient Advocate
I was assigned to an oncologist after my first cancer surgery. At my first visit, he informed me that my course of treatment was based upon other women who were of the same age and had the same type and size of cancer. He provided me with a printout from WebMD that reflected the statistical data that would serve as the foundation for my treatment. I took the pages and left the office to think about what I had just learned.
On the next business day I called his office to inform this doctor that I would not be returning to him for further treatment. Then I called my primary care physician, told her what happened and requested a referral to a different oncologist. I am not a statistic and I am not just like a bunch of other people so why would my treatment be based upon anything other than my own factors. Ironically, the new doctor shared the same office suite with the original doctor but that was the end of the similarities. My new course of treatment was based on my personal testing, including an assessment of the cancer itself that had been removed. As a result, the course of action taken was completely different.
This oncologist also learned from my blood tests that I had a parathyroid gland that was overproducing calcium and needed to be removed. Having no idea what a parathyroid gland was, I started to do research on the Internet. I learned about my problem and the surgery that would be involved to identify and remove it. But when I met with the first surgeon, I learned that he was using an older, very invasive technique when there was a much simpler one that had been in use for 15 years. I took the information about the new method to my primary care physician and she reviewed it. I met with two more surgeons who only performed the old style surgery before she found one who was qualified in the new method.
I was grateful that I had such a great doctor. She listened to my concerns in the first situation and referred me to the perfect oncologist. In the second situation, she read the materials that I shared with her and not only found me a doctor within my medical group to do the new procedure but also took that information and provided it to another of her patients who needed the same procedure and who would never have known about the newer technique were it not for conversations that I had with that same doctor.
I knew how important it was for me to learn about my options and to have those discussions with my own doctor. If I had not had them, I would have had a whole regimen of chemo and radiation that I did not need. I would have had my throat cut somewhere between eight to 10 inches rather than just over one inch. The physical results to my body would have been excessive along with the associated increase in the mental toll that such treatments would have taken. Added to that is the costs of unnecessary treatments and hospitalization that would have resulted and the costs that would have been incurred by my employer for my time away from work along with the disability funds that I would have received from the government.
With the new regulations being placed on the medical community with the advent of Affordable Care Act, not the least of which is the electronic medical records, it becomes clear that our doctors are going to have less time to spend with more than likely an increased patient load. Therefore, it becomes necessary that we each take responsibility for our own care and those who are not able to do so for themselves. When a diagnosis is made, we need to become knowledgeable about the problem, the various options for treatment and any new research that is currently taking place.
As a result, when we meet with our doctors, we can discuss the various options for our personal care and perhaps provide information to them of which they are not aware for additional consideration. No doctor is an expert in all fields but will most likely be open to discussions. But if they are not open for discussion or review of the materials you provided or if you are not satisfied with a decision, seek a second opinion. You must have trust and confidence in your medical providers. There is no one who has as greater interest in your health than you do and remember, it is your life. You owe it to yourself to do the best that you can with it.