Why I Became A Cancer Patient Advocate

In Breast Cancer, Recent Posts by Barbara Jacoby

patient featureRecently I was having a conversation with someone and was asked about what I am doing on social media and why am I doing it. I did have an interesting chat about this but I started thinking about what was the motivation behind what I am trying to accomplish. Very quickly, two particular events came to my mind that changed the whole way in which I viewed my personal healthcare and changed the direction of what I wanted to make my mission in life.

That is why I am doing everything that I can to help others by providing information that will hopefully assist in making these most important medical decisions.

When I was diagnosed with cancer the first time, after I had a lumpectomy, I was directed to an oncologist who would decide and direct the course of treatment that would hopefully keep the cancer from ever recurring.   While I don’t intend to revisit all of the details of that first office visit, I will say that I was given a printout from the WebMD site that indicated what the statistics were for women of my age and an indication that based upon this information, I needed to start chemo immediately, followed by radiation therapy and then hormone therapy for 5 years. I was told that arrangements were being made for me to start the chemo right away and if I had any questions, I should go to the WebMD site for my answers.  This occurred at lunchtime on a Friday afternoon.

I’m not a doctor and had no knowledge about breast cancer and its treatment but something did not feel right. I thought about this all weekend and the first thing that I did on Monday morning was to call the oncologist’s office and indicate that I would not be returning there and to please cancel any arrangements that they had already made. Then I called my primary care physician (PCP), told her what had happened and asked for a new oncologist referral. Not only was I referred to a fantastic new doctor who based my care on the testing of that first cancer as well as the tumors that were found that resulted in my ultimate double mastectomy but he also diagnosed a problem that I had with my parathyroid glands.

This welcomed my second round of research. What the heck was a parathyroid?  I was told that there was definitely no cancer involved with the thyroid gland or parathyroids but there was sure a big problem with figuring out which one or more of the four parathyroids was causing the problem.  I was really losing confidence in the process when it took 3 nuclear medicine tests to reach a conclusion.  The nuclear medicine test is suppose to light up the bad gland or glands so I couldn’t understand what had happened the first or second time that did not result in an answer.

This led me to do more research and it was at this time that I learned that the procedure that I was to undergo was the “old” technique created in 1925 that became outdated in 1995 when a shorter, quicker surgery had been created.  After my second referral to a doctor who did the old procedure, I again went to my PCP for help.  I printed out the information that I had found on the internet to share with her.  Ultimately it was determined that there was no one in my medical group who performed the new procedure but they did ultimately find someone to do it outside of the group that allowed for the insurance coverage that I had to be applied in the same way that would have occurred inside of the group.

I was ecstatic. I going to have a 20-25 minute procedure with a scar of about an inch or so and be able to go home immediately thereafter rather than having an 8-10 inch incision with a 4-5 hour surgery and at least a two-day stay in the hospital for follow up care.  I was so very proud of what I had done and so grateful for the wonderful PCP who listened and helped to find an alternative.  But the real kicker came when I found out that my PCP had taken the information that I had given her and provided it to another one of her patients who had the same problem who then in turn found her own doctor to perform the new surgery.  That was the turning point for me.

Now, more than ever, I believe that we must do our own research and understand what our diagnoses and treatments are.  I am so grateful for the PCP that I have who is willing to work with me and take the time to assess what is best for me.  I am grateful that I trusted my instincts when I did not feel comfortable with the method by which the oncologist decided my course of treatment.

Mostly, I am grateful that I realize that not every doctor has all of the answers to every problem and that we, as patients, can take responsibility for our own healthcare by doing some research and providing information that we find to our doctors for review and assessment.  And if ever we are not comfortable for any reason with the doctor who is in charge of our care, for the best outcome for both the patient and the doctor, we need to change that doctor.  That is why I am doing everything that I can to help others by providing information that will hopefully assist in making these most important medical decisions.