Passing Along My Experience
Every year I schedule a visit to my gynecologist and get a mammogram. Leading up to and including February 2015 I received that standard letter I was accustomed to receiving in the mail. It read as usual “We are pleased to inform you that the results of your breast exam performed on … are normal … it is recommended that you have your next routine screening breast exam in one year.” Great, I thought.
Oddly, I had been feeling a very quick “pinprick” like feeling in my right breast above my nipple. I was like, hm? Infrequent and happening maybe every few weeks, I at first did not pay it too much attention. But then it happened a few more times. In addition to that “pinprick” feeling (literally like someone taking a pin and pricking my skin with it) I too had an occasional ache under my right armpit. But initially dismissed it. Until, that too happened a few more times.
I was then headed back to the gynecologist. She asked if I drank a lot of coffee. Guilty! Then she said cut back on your coffee. I must admit I was not giving up my coffee, although I cut back a bit and switched a few cups to decaf. But that “pinprick” in particular continued to happen. I headed back to the gynecologist’s office a couple of weeks later, and she did one last physical exam. Finding nothing, she next suggested I see a breast surgeon.
Taking her advice, I immediately made an appointment with a breast surgeon. The new surgeon I was seeing, now mid-March, reminded me I just had a mammogram in February and it was “normal.” I said yes, however I went on to explain the strange “pinprick” feeling on my right breast and ache under my right armpit. At this point she ordered another mammogram. This test too showed “normal.” After I pressed on with her it was at that point she recommended I get an ultrasound. I scheduled an ultrasound. While getting the ultrasound, the radiologist said confidently, “Arlene, there is just nothing here.” This test too came back “normal.”
It was at the very point after re-reviewing all my test results of my two mammograms and one ultrasound with my breast surgeon and the radiologist, I was told “there were no unusual or suspicious findings.” Even though I knew in my gut something wasn’t right. But how was I to continue to persist when a surgeon and radiologist with extensive credentials, along with three diagnostic medical tests say nothing’s wrong with me?
You may feel the same way too but DON’T LET IT GO. Listen to your body. BE persistent. If you feel something is not right, it may not be. Get it checked out!
So at my final appointment as I was walking out of my breast surgeon’s office with my hand on the door handle and the door half opened, looking back at her I said, “I’m telling you, something just isn’t right, but if you say it’s nothing, ok.” It was at that exact moment my doctor said, “Wait. If your insurance does not need an authorization, we will get you in for an MRI.” My insurance carrier thankfully did not need an authorization.
The Journey Begins
Write Everything Down
It was my awesome mom, Rita and amazing friend Anita who were among the first I told about my diagnosis of breast cancer. I just couldn’t believe it. When I was headed to my first doctor’s both my mom and Anita told me to “Make sure you take notes.” My immediate thought was “Hum, notes?” there shouldn’t be many notes to take, this will be quick. I don’t have breast cancer, DO I? (and yes, deny you will). Ok, I listened and I brought a pen a piece of paper. It was then when those doctor’s appointments started to mount and those few pieces of scrape paper ran out.
No kidding, I would then ask the girls behind the desk if they could give me some white copy paper from the doctor’s office printer (we do what we have to do, I’m not shy). Then I started to bring my own copy paper!
On the top of each piece of paper I would write the doctor’s name I was meeting with, the date and the time of our appointment. I would write up the same exact questions for each doctor’s appointments which helped me to accurately compare the doctor’s answers from each appointment. Looking back this was MY way of starting to gain control of MY diagnosis! And should be yours too.
As the notes continued to mount I found the single sheets of paper became many and I started to staple them all together. I found myself bringing multiple pens as the ink started to run out. I then brought a notebook until finally it was too much information scattered all over the place and I wanted it all in one centralized location.
So I started to type up my notes from all those scrapes of paper, doctor’s copier paper and the notebook into one word document onto my computer. And it was at one MOMENT when sitting there quietly at my computer, overwhelmed, from the amount of notes I had accumulated, did the reality start to hit home, I had breast cancer, RIGHT? It was in that MOMENT too I realized I had written 60,000 words!!!!!!!!!!!!
So Much For Planning A Birthday!
So here I found myself at 49 instead of planning my 50th birthday in August and talking with my good friend Paula graphic designer extraordinaire, who was to create my birthday invitation and help out with other party planning ideas, venues where to host my party, and getting my guest list in order, I’d be having my first surgery — a mastectomy of my right breast. REALLY!!!
I feel great! I feel strong! I looked beaming healthy! Working out at the gym four times a week (ok really three times, ok maybe sometimes two)! Surgery, I thought, how long will that take!?! I’m busy! So it was at 5:45PM on a Friday evening on the Long Island Rail Road I was on my way back to Manhattan from my office in Great Neck, Long Island when my cell phone rang. I picked it up and I heard “is this Ms. Karole?” I said, “Yes.” The next thing I heard was “you need to schedule a CT Chest Scan, a Right Axilla Lymph Node Biopsy, and a MRI-Guided Breast Biopsy.” Caught completely off guard I said, “What!?!.” In summary, she said your “MRI lit up” and we need more tests. Almost to Penn Station, entering the tunnel to Manhattan quickly losing my cell phone reception, I said thank you and hung up. Needless to say I didn’t have time to ask, what does that mean, an MRI lighting up? Why do I need additional tests? What do I have? I feel fine! And as it goes I had all weekend to research, and research away I did. Bottom line, when I typed in “MRI lighting up” it was greatly alarming to see that all articles and links that popped up were tied to breast cancer. REALLY, breast cancer! But my two mammograms and one ultrasound were “normal.” I’m sure this will be fine, RIGHT?
So seeing those two words—breast cancer—when I initially researched the words “MRI lighting up,” well, I thought that would be the most powerful punch to my gut, the most shocking, the most frozen-moment-in-time feeling I’d have. Boy, was I wrong. Early on in my diagnosis, when I was headed for a second opinion at a medical center in New York—that was the hardest punch yet. While my primary care doctor and the other doctors I had seen were always on the east side, it was for this particular visit that I was told to go to an office in midtown. I was like, Hm, I wonder what building that is. I’ve never seen any of my doctors at this particular location. On the day of my appointment, I knew I was getting close as I saw their very defining logo on the building facade in the distance. As I got closer, I could read the wording, and I was immediately sick to my stomach and horrified: Cancer Center! Why am I at a cancer center? I don’t have cancer! Or . . . do I? You just simply can’t believe it is happening to you!
I KNOW. I get it, I’ve been there. YOU just simply can’t believe IT IS happening to YOU!!
About The Author
Arlene Karole is a Fellow of the American College of Healthcare Executives (FACHE), certified healthcare professional (CHCP), lifelong learner, journaler, and educator. She is also the director of the Office of Academic Engagement, Education, and Communications in the Department of Cardiology at Northwell Health. Arlene serves as an adjunct assistant professor at St. John’s University in New York City. Based on her personal experience, her book is dedicated to helping others become self-aware and empowered by taking charge of a breast cancer diagnosis. She is active with the SHARE national breast cancer organization, a member of the National Consortium of Breast Centers (NCBC) and on the National Consortium of Breast Centers Conference Survivorship Planning Subcommittee (NCoBC). Arlene has extensive experience working with large health systems and national nonprofits. Her passion to assist others, along with her enthusiasm and commitment to excellence, makes her a sought-after influencer. Arlene has a master’s degree in health services administration from Central Michigan University.
SHARE: SHARE is a national nonprofit that supports, educates, and empowers women affected by breast, ovarian, uterine or metastatic breast cancer, with a special focus on medically underserved communities. Our mission is to connect these women with the unique support of survivors and peers, creating a community where no one has to face breast, ovarian, uterine or metastatic breast cancer alone.
NCBC: The National Consortium of Breast Centers (NCBC) is dedicated to improving the care of breast health patients. We offer an interdisciplinary conference for breast health professionals in Las Vegas in March of each year, as well as regional Navigator certification programs across the country.
A Place to Heal
My beautiful Mom
provided a place to
recover in her home.
Dr. Jennifer Lehman
joined me at breast
My Breast Friend
Anita sat patiently in the
waiting room during my
Got an areola tattoo,
so much for the
A welcomed 50th birthday
celebration after a year
filled with medical tests and