This is my story I posted on Facebook 4 days prior to my surgery. It is a long post but for those that didn’t get a chance to read it, I feel it is very important to share. I learned some very important things after my breast cancer diagnosis about breast density and how it affects the chances of catching breast cancer in its early stages. My hope in sharing this information via Caring Bridge is that someone, somewhere just might not be caught off guard by a later stage diagnosis.
Never in a million years did I think I’d be sitting down to tell you this story. No one ever would, but we know it happens, and it’s more common than we want to admit.....I have breast cancer. Even in typing that sentence it is still hard to believe. I will undergo a bilateral mastectomy on 12/27/18, just a few short days away. I am very scared. Even so in saying that, I still have to say that I feel blessed. I feel blessed that it was caught early, my prognosis is very good. I feel blessed to feel the love and support and prayers from so many who know me. I feel blessed to have health insurance that will cover the majority of the financial costs of getting well. I feel blessed to be able to share my story with everyone who has breasts or knows someone who does. I feel blessed that my diagnosis, my story and the information that I will be sharing could possibly save one life. Saving a life by helping someone, who has breast cancer, find out at an early stage. If that happens, this will be all worth it.....
After my last physical, on 8/24/18 my primary doctor said that I was healthy; weight, blood pressure etc, and that he didn’t have anything to “scold me” about except for the fact that I hadn’t had a mammogram in several years. He handed me the pink card with the number for St. Luke’s Breast Center and told me to make the appointment. Here’s me, (rolling my eyes to myself) saying “OK”.
I finally went in in for a routine mammogram on 11/05/18. This was an appointment I had been putting off for several years. I had been thinking, “I don’t have a family history of breast cancer” (I was wrong). I was also thinking, what a pain in the butt it was to get a mammogram. Due to my muscular dystrophy, getting situated in the “squash box” is more challenging for me than most, and really, what woman looks forward to getting their boobs squished!? During that mammogram I was saying to myself, “I will be glad when this is over, I won’t have to come in for several years after this.” I got the usual departing message “We’ll call you if we see anything that concerns us, otherwise you’ll get a letter in the mail (the happy gram) if everything is ok”. I left and didn’t think about it again....AT ALL.....On Wednesday afternoon I got the call. They wanted me back for a follow up mammogram because they saw “calcifications” on my images. After I made my appointment for that very Friday, 11/09, I was slightly concerned so I googled it as most would do. I learned that calcifications can be an early indicator of breast cancer. So of course, I got more concerned and reached out to my closest friends explaining my situation. As most close friends would do, they said, “Don’t worry! everything will be fine....” unfortunately everything was not fine. I was told that at my follow up appointment I would have a more close up mammogram and ultrasound and needle biopsy, if needed. Of course by the time the follow up mammogram and ultrasound was done, I could feel the weight and concern from everyone around me that I would be getting a needle biopsy. When the doctor came in after reading my mammogram and ultrasound, I said to her, “Don’t blow smoke up my ass. I know you know what you can see off of the mammogram and ultrasound. How concerned are you?” She replied, “I am very concerned”. WOW! Really? So, by myself, on that examining table, I started to digest the thought “Do I have breast cancer???” I found out that not only did I have calcifications, I also had a small mass in the upper left side of my right breast. The doctor came back and did the needle biopsy, which all in all, wasn’t that awful. When it was done I asked the doctor what percentage she thought that the biopsy would come back as malignant, she said 95%...... she was right, on the following Monday, I got the formal diagnosis of breast cancer from my primary doctor. I have stage 1, invasive ducal carcinoma and also ducal carcinoma insitu. I AM SO LUCKY!!! Why am I lucky if I have breast cancer? I am very lucky because it was caught so early.... I am lucky it was caught early because I have dense breast tissue. Do any of you who are reading this have dense breast tissue? If you don’t know, you need to find out. If you know you have dense breast tissue, but never gave it any more of a thought than if someone said you had blond hair vs brown hair, you need to keep reading. Copy the link below and look it up. https://www.areyoudense.org/files/5015/1483/5515/What_is_dense_breast_tissue_for_web_2018.pdf
The woman who started that website in the link above went in for routine mammograms EVERY YEAR since she had turned 40. Every year, she got a “happy gram”. “All is good, see you next year”. After she received her 11th “happy gram” 6 weeks later she went in for another preventative exam with her gynecologist. Her gynecologist did a manual breast exam, as they always do, and felt something unusual. She referred her back for another mammogram and ultrasound. The mammogram was STILL showing clean, and it wasn’t until she had the ultrasound where they found the cancer. Stage 3!!! With many lymph nodes involved! When I stumbled upon her website and story, I gasped to myself, what if mine was missed?? It was sobering......
As of right now, mine was caught early enough where radiation and chemotherapy is off of the table, I won’t need it. That could change after the final pathology is in after my surgery, but I am hopeful. I could have had a lumpectomy and radiation, but that would have left me with a very deformed breast. I chose a mastectomy because I don’t want radiation and I want to look “normal”. I am also choosing reconstruction. The best way to look as normal as possible afterwords is to have the same thing done to the other breast. So after a very difficult consideration I am opting for the double mastectomy. I made the choice before I found out the information about what it means to have dense breast tissue. After I found out the information below, I feel validated and that I made the right decision for myself.
Fact: If you have dense breast tissue, you have a greater chance at getting breast cancer, more so than having a family history of it. (And I do have family history. It doesn’t just have to be a mom or grandma or sister. I have two aunts on both sides of my family who have had breast cancer, as well as a few other relatives, that’s enough)
**This was just published on 11/20/18:
Fact: Up to 50% of breast cancer is missed on a routine mammogram in women with dense breast tissue. (Also noted in the article in the above link).
In addition to sharing the information I have, I also have one more thing to share that I feel is very important. I am sure most people wonder if there are signs of possibly having breast cancer besides feeling a lump. I did not feel any lump, mine is only approximately 7 millimeters in diameter, so obviously that would be hard to detect. However, in hind sight, I did have a few subtle signs which when I explained to my oncologist, radiation oncologist and breast surgeon they validated them as real symptoms. In the year prior to my diagnosis I had some weird symptoms that I dismissed. I’d wake up in the middle of the night to get up to use the bathroom. I’d sit up in bed and my right breast felt....”heavy”. It was also slightly painful, like how breasts would feel if you are
pregnant or menstruating (sorry guys you don’t know how this feels). Also, at times I would also feel some tingling, like how it feels when you are nursing (milk letdown). These feelings were all in the area where my breast cancer was found. At one point when I was experiencing these symptoms I even thought to myself, “I wonder if I have breast cancer? I should probably schedule that mammogram”. I dismissed all of my symptoms and thoughts because they were not significant enough in my mind.
My advice: Don't skip your mammogram. Don’t ignore symptoms, even in the slightest. If you’ve had a recent, clean mammogram, and have nagging symptoms, go in and request an ultrasound. If you have dense breasts, discuss this with your doctor and get an ultrasound in addition to your mammogram. At this point it is not a 100% covered benefit, but pay the extra money, it is well worth it.
I am not the smartest person on this planet, but I’m smart enough to know that it was extremely important to share my story. As I said, if this helps ONE person to get an early diagnosis, then my story and situation will not be in vain. I have faith in God above. I’m hoping the one person who needs to read this LONG story, does. I hope it helps. It would be a blessing to know or hear if I’ve helped anyone. Please share my caring bridge, I will be posting about my surgery and recovery. I know it’s not going to be an easy journey but knowing I have the love and support of many will help me immensely.