Throughout October I'm showcasing breast cancer survivor stories from CafeMoms for Breast Cancer Awareness Month. I hope that these stories not only raise awareness but also provide hope and comfort to women who have been diagnosed or are being treated for the disease.
Today, Gina.L, mom of three, shares with us her experience of being diagnosed with breast cancer at age 26. What doctors thought to be a nursing problem, ended up being Paget's Disease, an extremely rare form of breast cancer.
"Gina, it's cancer. You have Paget's Disease. It's breast cancer." Just like that, my world was turned upside down. No warning, no hype. Just telling me the facts. Does anybody eve really expect to hear those words? I didn't. As I sat there alone in the stark white, examining room, I dreaded to hear what my results were going to be. A skin infection maybe. Cancer. The thought had crossed my mind, but when those words were actually uttered by the dermatologist, I zoned out. Really? Did I hear him right? Maybe there was someone else in the room he was talking to? Nope, just me. I was the one who had cancer.
I found out I had breast cancer on a Monday. It was Monday, February 2, 2004. Groundhog's Day. It was a cold, dreary day. There was snow on the ground. My appointment had been in the morning to see the dermatologist. I was alone. My husband at work, my dad watching my two toddlers at home. I was numb. I don't quite remember what was said after that other than I had to make an appointment with a surgeon, oncologist, and specialists.
As I stepped out to my car, I pulled out my cell phone to call my husband. It was dead. I slid into my car and looked around for the charger. Nowhere to be seen. I had devastating news, and no one to share it with at the moment. It was at that moment, that I realized I was not alone. I had my Lord. I cried out to Him. I prayed the whole way home. It was then that I realized, "This life was not meant to be lived on my own strength." I needed Him. Finally, something out of my control that I couldn't fix, ignore, or delegate. Only he could give me peace and comfort. Only He can control my life. Not me. I finally realized what it meant to give my life over to the Lord. By putting my life in His hands, I believed that He is who He says He is.
I don't know whether it was a peace I felt that day or just overwhelming numbness, but something was different. I was calmer as I pulled into my driveway 15 minutes later. It is scary to think that I don't really remember driving home that day. Nonetheless, He got me home safe, ready to start a new leg to my journey.
I never thought I would be diagnosed at age 26, but there I was, a young mother of two toddlers, knee-deep in dishes, diapers, laundry, nursing, cooking, cleaning. I didn't have time to check myself for breast cancer. I have to admit that at the time I rarely ever did my monthly self checks.
However, my Breast Cancer presented itself not in a lump, but in the form of a cracked and bleeding, and eventually, VERY itchy, nipple. All too often, Paget's Disease gets overlooked because it is so rare. Paget's Disease accounts for about 1 percent of all Breast Cancers. About half the people who are diagnosed with Paget's Disease feel a lump, while others do not. In my case, I did not have a lump. The demographics for Paget's Disease are usually women in their 60's and also men in their 60's. Also, there is a corollary factor with women who don't have children or have them later in life and Paget's. It is said for a woman to get it in her 20's is extremely rare. I also had two children at the time too. I guess I'm a rare one!
I knew it was very rare when I was at a doctor's appointment the week I was diagnosed. I was getting a second opinion at a major teaching hospital in Chicago. The head breast surgeon there examined me, confirmed the diagnosis and then asked if her med students could come in and take a look. In the name of science and education, why not! So, in piled 15-20 med students in this little tiny room. I noticed that most of these students were my age. The surgeon, in all seriousness, began to explain to the students all the technical terms, symptoms, and things to look at when they filed by me. I felt a little like a lab rat, but hey, if by having these handful of people examine me and learn what to look for in other women, it could help save someone else's life someday, then it was all worth it! I did recall the doctor saying as they filed in and out in an assembly like fashion, "Take a good look at this and notice all the cracks, indentations, scabbing, and size. You won't probably ever again in your career see another Paget's case in a patient so young. Gina is currently 26. Remember that."
For an entire year and two months before my diagnosis, I was misdiagnosed by four physicians (two of whom were breast specialists). I had also seen two different lactation consultants, consulted La Leche League, and finally went to go see my dermatologist. He was the only one who would finally do a biopsy and take me seriously. Most women with a cracked and bleeding nipple, while also breastfeeding, would assume that it is a nursing problem. I did at first as well, until the wound would not heal and everyone told me I was nursing correctly. I was only having problems on that one side. I was so fatigued and worn out that year. During that year I had four rounds of mastitis, rounds and rounds of steroids, antibiotics and different creams. Nothing healed my wound. It was getting worse and worse, and I was running out of patience and time. Being diagnosed was a bit of relief in a way. I finally had an answer to all the problems.
I had my mastectomy three weeks after initially being diagnosed. I opted for immediate reconstruction via an expander and eventually a permanent silicone implant. Because I had such young children at the time, lifting them was out of the question after each surgery. My husband was wonderful, and we had so much support from family and friends. My parents were here around the clock the first six weeks after each surgery, taking care of our two toddlers and eventually our third baby. He was born in the midst of all my surgeries in the years following my initial diagnosis. Our church family also was incredible, by providing meals the first six weeks after each surgery. We could not have gotten through this without the support of our family and friends. Another resource that was a lifesaver was Breast Cancer Network of Strength (formerly Y-ME). I was looking for support from other young moms dealing with Breast Cancer and they connected me with someone who understood my feelings and struggles as a young mom. Because of my experience, I decided to become a volunteer with them, and I am currently a Peer Match Counselor.
In the years after my breast cancer, my outlook on life has certainly changed the course of our lives. We have become committed to Christ and praise Him every step of the way on this new journey. We have chosen to homeschool our children, to enjoy every moment with family. That also enables us to take trips on our own schedule and not be tied down to a school or work schedule. I work from home now, helping others create the lifestyle they want. I give back to the community by providing a great opportunity to families that need help paying for medical bills or just need to make ends meet as they battle cancer or other life threatening illnesses. Through my fundraising business, I donate most of my profits back to such families, who use my services. I started my business in part because I wanted to help others. I understand how expensive cancer can be, even with insurance coverage. Our mission has certainly changed!
So while I recognize that my experience with Breast Cancer was a very rare one, not every woman is as "lucky". By lucky, I mean that my symptoms were very evident, albeit misdiagnosed for a year, obvious nonetheless. Lumps can go undetected. So get to know your body and check yourself every month! Tell the women in your life to check themselves and have anything suspicious checked out by a doctor. One in eight women will be diagnosed with breast cancer. ONE in EIGHT! Those are high odds, but early detection really does make a difference in survival rate. Remember also, that most breast cancers are not related to family history at all.
To learn more about Gina.L's story, please visit her blog, Disciple From Home. She is also writing a book about her experience called, Breast Cancer Was My Greatest Blessing: It Saved My Life.
Do you have a story to tell? How has breast cancer touched your life?