First the Good News
You never forget where you were or what you were doing the moment you are told you have breast cancer, NEVER! My initial diagnosis was in January of 2002. I was ironing my husband’s shirts and watching a cooking show. It was 9:15 a.m. when I received the call. The doctor started out with the good news first. “Some of the tumors we biopsied were normal, but”… Yes, this was breast cancer: diagnosis #1.
But……
As soon as he said the word “but” I knew. I turned the iron off quickly and sat down and grabbed a pen and paper. I had invasive lobular carcinoma in my left breast. I began trembling as a tried to write down notes. My handwriting was so shaky I couldn’t even read what I was writing. Meaningless fragments of words appeared on the page. I continued to tremble and tried to think of questions. What next? What’s my survival rate? Will I have to have chemo? Then I began to cry. I told the doctor with great affirmation I was very tenacious and wanted him to tell me everything upfront. I was tough and I could take it. All of these words came out in rapid fire fragments while I was sobbing on the phone. It seems so silly to be crying and at the same time telling the doctor how tough I am, how I’m going to make it through this and beat this; as if he hasn’t heard this statement one hundred times before.
Check the Girls Monthly!
We just moved from Seattle to Houston. It took a few months after the move to establish a new doctor and set up appointments until I got the grim news in January about my diagnosis. I found the lump myself in Aug. of 2001 shortly after our move during one of my monthly self-examinations. A shout, way out loud, to do your monthly self breast examinations! Here is some great information for you on breast self-exam. I believe when you have some semblance of breasts you should begin doing self-breast exams (SBE). There are too many young women being diagnosed with breast cancer these days and make no mistake, this group is a strong army of young survivors . Know your body and recognize subtle changes. I have always been very small breasted. I had fibrocystic disease for years and dense breast tissue. By performing my monthly exams I was able to catch it early the first time.
Wait, Cry, Hug, Plan
You may go through a flood of emotions depending on your individual circumstances and how you accept the news. The first time for me was emotionally exhausting. I was alone for about an hour until my husband left work to be with me. He had an hour commute on a normal day. This was not a normal day. I really don’t think I wanted to know what land-speed record he was trying to break driving home. By the time he walked in the door with a shocked looked on his face we just hugged each other for a very long time. Hugging is good. We sat down and began to plan out what we needed to do.
Eating an Elephant, One Bite at a Time
You cannot solve this problem in one day so don’t even try to. I always said, dealing with cancer is like learning how to eat an elephant, one bite at a time. I remember dropping about five pounds the week I found out about my first diagnosis. Allow yourself to be confused, pissed off, exhausted, weepy or systematic and logical. You will have to come up with a plan but it’s not urgent you do it all in one day unless your doctor told you from your diagnosis he needs to see you now. Give yourself time to get organized and determine what next steps will be.
Feeling Comfortable and Confident with your Physician
Our priority was telling family and friends. We did, however, start making follow-up appointments immediately. I believe it is important. You will get enough information from the physician who received your biopsy report, in this case my breast surgeon, to at least begin making an informed decision about whether you feel comfortable with the treatment and/or procedures and if you are comfortable with your choice in a surgeon. In most cases the manner in which they communicate gives you a true sense of whether you want to work with a doctor and trust his/her expertise. Things can change, as they did in my case, but you usually get a good sense of whether or not you will engage in a shared decision making conversation with your physician. There will be times when there is a misdiagnosis or a diagnosis needing to be clarified with prior health records. This can be traumatic as well but you will just have to pull your knickers up and figure out how to get to the other side of those kind of events. It happened to me in both of my diagnoses.
Get Organized
Start making files and label them. Each time you leave an appointment it seems you are handed information about, test results, support group literature, websites to visit, etc. These are all good titles for any folder, by the way, so start from day one to get organized because your medical file is about to get big! Now there are amazing apps you can use to assist you in personalizing your breast cancer journey. One I frequently tell newly diagnosed patients about is the Breast Advocate app. It is like having the information in the palm of your hand at your appointments.
A Second Listening Ear
I advise taking someone with you. Whether it is your spouse, partner, a friend, another family member or neighbor, I think you will fine it to be valuable in many ways. If you do not have someone to be with you inquire before your appointment if you could have access to an advocate or nurse navigator. Be sure you choose someone who will be there for just that reason, to be a second ear. You don’t want someone who will argue or question your physician or start dishing their opinion about what they think as soon as you enter the doctor’s office. Have them take notes while you speak with the doctor. Perhaps even a tape recorder to tape the conversation is a good idea. Many doctors are becoming quite used to this approach for gathering information. In fairness to the doctor, please let them know you would like to tape the session.
It is funny how you hear the doctor talking but it doesn’t always process into useful information until you leave the office. Then those 100 questions start popping into your head. Doctor’s are very busy and their work load is more than we give them credit for sometimes. Chances are they are going to be big decisions involving surgery, chemo, radiation and subsequent tests and procedures.
Clearing Out the Cobwebs and Taking a Break
When you have returned home after your appointment and your head is full, spinning from information and literature, turn on the TV, rent a movie, read a book non-cancer related, eat chocolate. Simply stated, be good to yourself. Take time to breath and as they say, “Mental clearance sale. Everything must go!”
I can’t tell you how many times I hear cancer patients say they feel so confused and overwhelmed. This is understandable and normal. You are living a normal, non-dramatic life one day and in an instant, a second, it can all change. It seems surreal, almost melodramatic at times as you start to get the word out about your diagnosis. It’s why I say, take a break. Don’t talk about the “C” word. Don’t look anything up. Go for a walk alone or hand in hand with someone. Do whatever it takes to just give everything about cancer a BIG BREAK. It doesn’t and shouldn’t run your life even though it seems to have the upper hand most of the time.