Almost every breast cancer patient in need of surgery will hear some version of "I'd just take them off so I wouldn't have to worry anymore" from well-meaning but uninformed friends and relatives. I might have said the same.
As a newly diagnosed breast cancer patient with EP+HER-, deciding between a lumpectomy and mastectomy, I was surprised to learn that the average breast reconstruction patient undergoes 5 related surgeries in her lifetime.
It was a fact that none of my doctors shared with me. Nor did they share that 1 out of 4 American women needs a second surgery after a lumpectomy because of inadequate margins.
The more I dug into the research the more I realized how uninformed I was. Lucky for me, research is something I enjoy and so was a useful distraction during the hurry-up-and-wait phases of breast cancer treatment.
To help me keep track of critical pieces of information and research studies, I created the website www.breastcancertoday.org, which I formatted as a Quick Start Guide for new breast cancer patients, harkening back to skills I learned in my earlier career as a technical writer.
Now that I have finished my adjuvant therapy (surgery, chemotherapy, and radiation), I have been sending the website link to new patients who have reached out to me with questions about how I decided between treatment options.
I hope that it will serve as a useful resource to the many women and the few men who are diagnosed each year. We must be our own well-informed healthcare advocates.
And, if you are wondering what to say to a friend who was recently diagnosed, I found that a simple "How are you?" or "Thinking of you" text was a wonderful reminder that I was not facing cancer alone.