Diagnosis #1

girl with blue eyeFirst the Good News

You never forget where you were or what you were doing the moment you are told you have cancer, even if it was over a decade ago and the first time. My initial diagnosis was in January of 2002. I was ironing my husband’s shirts and watching a cooking show. It was 9:15 in the morning when I received the call. The doctor started out with the good news first. “Some of the tumors we biopsied were normal, but”…

But……

As soon as he said that 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 that I was very tenacious and wanted him to tell me everything upfront. I was tough and I could take it. This was all said while I was sobbing on the phone. It seems so silly to be crying and at the same time  telling the doctor how tough you are, how you’re going to make it through this and beat this; as if he hasn’t heard that one hundred times before.

Check the Girls Monthly!

We had just moved from Seattle to Houston so it took a few months after the move to establish a new doctor and set up appointments until I got the grim news and the January diagnosis. I found that lump myself in Aug. of 2001 shortly after our move. It was done on one of my monthly self-examinations. A shout way out loud to do your monthly examinations! Here is some great information for you on breast self-exam.   I believe that when you have some semblance of breasts you should begin doing that. 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 and have had fibrocystic disease for years, dense breast tissue, too, as they refer to it today. 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 will 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 but I really don’t think I wanted to know what land-speed record he was trying to break to get home that day. 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 that dealing with cancer is like learning how to eat an elephant, one bite at a time. Although 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 that you do it all in one day unless your doctor told you in your diagnosis that he needs to see you now. That often times will not be the case so allow yourself to get organized about 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. That, I believe 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 that surgeon. In most cases the manner in which they communicate gives you a true sense of whether you want to work with that 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 communication with your physician. There will be times when there is a misdiagnosis or a diagnosis that needs to be clarified with prior health records. That 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 kinds of events. It happened in both of my diagnoses.

Get Organized

Start making files, manila folders or otherwise, because each time you leave an appointment it seems that you are handed information about, test results, support group literature, websites to visit, etc. Those 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!

A Second Listening Ear

The advice is always to take someone with you and I couldn’t agree more. Whether it is your spouse, partner, a friend, another family member or a neighbor it is valuable in many ways. If you do not have someone to take with you inquire before your appointment if you could have access to an advocate of some sort. Be sure that 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 step out of the doctor’s office. That will be counterproductive to your choice for your course of action. 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 to gathering information but 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 to useful information until you leave the office and then of course the 100 questions start popping into your head. Doctor’s are so very busy and their work load is more than we give them credit for sometimes but in my opinion, when there is a cancer diagnosis they ought to portray to you that they will answer your questions so that you feel good about future decisions you are going to make because 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 and spinning from information and literature, turn on the TV, rent a movie, read a book that is 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 that they feel so confused and the word I hear the most, overwhelmed. This is so understandable and normal. You are living a normal, non-dramatic life one day and in an instant, a very second, it can all change. It seems surreal, almost melodramatic at times as you start to get the word out. That is why I say, take a break. Don’t talk 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.

It’s OK to put cancer on the back-burner for a few hours.

 

Disclaimer

References made to my surgical group, surgeon and healthcare team are made because they are aligned with my values and met my criterion after I did research of their practices and success rates. Any other healthcare provider that displays the same skill, compassion education and outreach to patients will be given consideration and recognition on this website.  The information contained on this website is not a substitute for or should be construed as medical advice. Please consult a licensed physician for medical advice.