Those first few days and weeks after hearing you have cancer are truly a nightmare. You are paralyzed with fear, bewildered that it has happened to you, and afraid for your body, your family, and your life.
When I first heard the words “You have breast cancer”, it felt as if all air had been sucked out of the room. My mind began to race, darting from one thought to another. Despite my natural inclination for research and understanding, I found dealing with the reality of my diagnosis challenging. Fear, anger, sadness, it was an emotional whirlpool.
I had never considered the possibility of a diagnosis. I realized I knew absolutely nothing about breast cancer. And I felt I needed to know. I began by “interviewing” several women I knew who had gone through a diagnosis, One, a good friend who has coached other women through their journey, reinforced to me that knowledge is power. At a time when you feel the world is spinning out of control, it is important to understand your diagnosis and as frightening as it may be, to have a sense of the journey you will now embark upon. I also realized that this knowledge would arm me to better advocate for myself and hold my own in conversations with my doctors.
One of the reasons I wrote my book FLAT PLEASE was to bottle up the knowledge I gathered for other women. I found the process of research harder than one would believe. At the time of diagnosis, you are provided with little to no resources from your care team. Even later on you might get a pamphlet or two, and if undergoing chemo a long list of possible side effects, but little else.
Online, there’s both a surplus and a scarcity of knowledge. Women already dealing with the trauma of a diagnosis — especially in the early days before they have a “plan” are left on their own to stitch together information. We all know in cancer land that Dr. Google is not our friend. It returns too much information which is overwhelming and leads one down rabbit holes. Joining online groups might seem like the thing to do, and many groups are supportive and welcoming. But in the early days, it also means wading into collective trauma.
One resource I stumbled upon during one of my Internet searches and now recommend (in addition to FLAT PLEASE :-)) to anyone at the early stage of diagnosis is Dr. Susan Love’s Breast Book. Now in its 7th edition, this book is described by many as the bible of breast cancer and one of the most comprehensive books on breast cancer ever written. Authored by the late Dr. Susan Love a breast cancer surgeon, and the Chief Visionary Officer of the Dr. Susan Love Foundation, Love’s book takes you to a deeper level of understanding about your diagnosis, surgical and treatment options, delving into the details so that you can be better informed and make better choices about your care. The book is divided into seven sections that takes the reader through the anatomy of the breast and common problems, cancer detection, decisions, treatment options, life after treatment and recurrence.
Dr. Susan Love’s breast book is written by a doctor. So is medically detailed, but information is very sound, up to date and presented in a way that a layperson can understand. I read the book cover to nearly cover (skipped the recurrence section and I hope to never be required to read that part of the book). It helped me get my head wrapped around my specific diagnosis, the medical terminology I was hearing and it equipped me to have good conversations with my surgeon, medical oncologist and radiation oncology, to understand what they were telling me and to ask appropriate questions.
