The Importance of Patient Advocacy

Never in a million years did I think I would be diagnosed with early stage breast cancer at 38 years of age.  5% of women account for all breast cancer under the age of 40.  My radiologist told me, with no prior family history, that I was simply “a fluke”.  What a benign choice of words for such a potentially dangerous diagnosis. Still, I struggled from the beginning to gather the information that I needed so that I could make the most informed decisions about my health.  Without having any prior knowledge about breast cancer, this was no easy task.

Delving into the world of cancer is quite an undertaking.  Immersing yourself in a new language of medical jargon that seemingly only a person wearing a white coat can fully understand. You wait for hours on end just to talk to the experts in the field while clinging to promises of a better future. Only to go home at the end of the day and find the simple juggling acts of everyday life awaiting you- kids, work, grocery shopping… the list goes on.  No wonder it is overwhelming!

 I picked one of the best hospitals in the country, looking forward to the endless supply of information waiting for me on the other side of the door.  Having a Master’s in Psychological Services my expectations were high, and I was interested to see how they approached such a delicate subject.  I expected to find an outpouring of support and helping hands but instead was left with more questions leaving than I had coming in with earlier that day.   Even my husband’s eyes were glazing over! 

Slowly along the way, I realized that no matter how promising the hospital, you still need to be a strong patient advocate, arming yourself with questions, alternatives and opinions on how this is going to affect you- the patient.  Doctors don’t always want to be questioned on their decisions or recommendations but it is your right as the patient for this type of exchange of information.  In practicing what I preach, I found myself unveiling better options for myself; ones that the doctor’s never even recommended or mentioned.  If I had not been my own advocate, my story would have taken a very different turn (more on that in another post).

The words, “You have cancer” are never something anyone wants to hear.  But once the initial shock sets in, it is important to educate yourself on how this is going to affect your life-physically, emotionally, socially and so on.  Ultimately, educating yourself on the impact of these issues will help prepare you in making the most appropriate and well-informed decisions for you and your health.   

 I have always said that this is both a medical process and an emotional journey.  I hope that my webpage will provide some information, support and guidance to those that need it.  Knowledge is power and power is knowledge. When we know better we do better. 

Let’s do it.

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