It started with one blue folder, I soon learned that anytime you leave a doctors office with a blue folder, it wasn’t a good sign. I found myself wondering as I left appointment after appointment with yet another blue folder, if people in the waiting rooms and exterior offices and even in nearby offices knew what the blue folder meant, long before I did.
Do they sit at their desks and think to themselves, there goes another woman with the blue folder? Did they already know that I had breast cancer? Maybe not, but I wished I had a bigger bag to put the folder in as I left my appointments.
The first folder I received was from the radiologist after my mammogram. Which is fine, they are not your doctor, and have the unfortunate tasks of breaking the news to you that something is abnormal. I already knew, I felt it in my gut before going in.
They took a lot of extra images. The typical mammogram is about 15 minutes. I was there for over two and half hours, they worked with me until 6:30 PM, even though they officially closed at 5 PM. This blue folder was meant to be informative and guide me until I could get a biopsy, and later the results of that biopsy and meet with my doctor.
At one point in my conversation with the radiologist, he felt so bad about recommending I go for a biopsy as soon as possible, that he started to back pedal and said, “You know, maybe its only a polyp and you don’t need a biopsy, yeah you don’t need one.” While I appreciated his concern, not even he could wish this away for me. I replied, “If you see something suspicious then I think we need to get a biopsy.”
He immediately straightened his posture and said that is what he would recommend, if I was his daughter, sister, or wife, a biopsy is what he would recommend. Several more blue folders later from, biopsies, surgeons, oncologists, reconstructive surgeons, geneticists, more radiologists, etc. and I found myself overwhelmed with stuff but few answers to my questions.
Yes, there was some good information in the folders, but I am also a suspicious person and immediately wondered who paid to have the material printed, what are they really trying to sell me?
One thing especially that kept bothering me, was the lack of help knowing what to do with this information. Why isn’t there someone I can talk to that can help me make sense of all this?
Which doctor should I make an appointment
What doctor can help me get the answers I am looking for first?
Why does one doctor tell me to ask the other?
Why are the answers I get inconsistent?
After all, isn’t this one of the most recognized cancers, the “good” kind to have, with research and statistics readily available?
My questions were not complicated, I just wanted facts.
I felt confused, frustrated and scared. If I couldn’t get the answers I needed about my diagnosis then how would I ever get comfortable with my treatment plan? I was afraid I would be rushed through the system and into a treatment that wasn’t right for me and would suffer years of regret.
I had originally avoided turning to the Internet for information because I knew that would lead me straight to tragic stories and outcomes. I was getting frustrated and needed better answers. I persisted in asking my questions, I would not stop, and yes, eventually, I also turned to the Internet.
It turns out there was supposed to be someone to help me.
A Nurse Navigator I found out is the official title. Her card was buried in one of the blue folders and was not brought to my attention, not until I had completely switched up my team of doctors (more about that in a different post). I was filled with a sense of relief and frustration.
I now had another mission, to make sure that this information did not slip through another woman’s hands. I eventually met my Nurse Navigator. She was great and very supportive, but at that point, my decision was made.
Ultimately, I had to come to terms with the fact that science did not hold all the answers, I would have to accept this. I would accept that there are no guarantees and trust in the skills of my doctors. I would use all the information I did have. I would also rely heavily on my mothers experience and wisdom.
Her willingness to share and relive her experience as a Breast Cancer survivor with me was invaluable. Her courage is one of the reasons I feel so compelled to share my story.
Support from my family and friends, knowledge, my own experiences and intuition were all equally important in guiding me to make the decisions regarding my treatment that were best for me.