Being your own Advocate...

In the beginning of my breast cancer journey, I was at a loss for what to ask or what to do to prepare for all of the doctors appointments.  I realized very quickly that I had to be my own advocate.  Nobody, including the doctors, were going to do all of the research and ask the tough questions. They would give me the results from testing, but would stop short from making any of the medical decisions for me.  All of the medical decisions surrounding my breast cancer were mine to make...that is a good thing, but also very tough!  Doctors tend to offer the least invasive treatments first and then it was up to me to fill in the blanks by asking what all of the other options were.

I started taking a small, black notebook to every single appointment.  Before the appointment, I would write down all of the questions that came to mind.  My husband, Wiley, was very good at adding a different perspective and would add many questions to my list I hadn't even thought about.  It is strange how you feel so prepared before an appointment and the minute you get into the room, every question and thought you had disappears from your mind.

Absolutely have someone accompany you to each appointment.  A spouse, friend or family member can help you with this.  My little black book helped me to remember what to focus on, but having my husband at each appointment opened up a discussion which ultimately helped me make my decisions feeling very informed and supported.  I would write the answers down for later as so much information was given to me at some appointments I had a hard time remembering it all when I got home.  Some appointments were so overwhelming that I needed Wiley to know what happened, so that we could discuss it all at home afterwards.  

Trying to go to all of your appointments by yourself is just not a good idea.  I know it is tough to feel like you are burdening someone you care about with all of the cancer information, but you really should not go through this alone if you don't have to.  Find someone you trust to accompany you to at least the big appointments and consultations.

When I had my first appointment with my surgeon, we reviewed my test results and discussed the possibility of having only a lumpectomy in my left breast where the cancer tumor originated.  I asked what the chances of the cancer coming back in the remaining left breast tissue was?  I also asked what the chances were of the cancer coming back in my right breast if I did nothing with it?  Was removing only my left breast in a single mastectomy aggressive enough?  I asked a whole lot of questions and she gave me all of the answers I needed to make my decision based on my stage of cancer and my risk level.

If you don't already have one, get yourself a small notebook that is easy to carry.  Take it with you to each appointment.  It was very handy when one doctor would ask about what another doctor or specialist had said about something specific.  I could look back through the notes from that appointment and give an accurate answer.  I have learned to be my own advocate, to ask tough questions and to always take my little black notebook with me.  It has served me very well!

NEXT WEEK'S BLOG:  Making a cancer binder with your medical records...