I have faithfully had a mammogram every year since turning 40, but this was the first time I had ever been “called back”. Not only did they mail a letter to me, but the very same day I received the letter in my mailbox, I received a phone call from radiology. The doctor saw something looking “suspicious for malignancy”. All I knew was that the word malignancy meant CANCER and I was terrified!

Those additional mammogram views couldn’t come a day too soon! When I had the additional views done, the doctor also performed an ultrasound. It was there where I saw the mass for the first time, an olive sized mass behind the areola. Now this was not the first time I had has issues with my right breast. Two years prior to this incident I had a palpable lump on the right side of that same breast, closer to the arm pit. I saw a surgeon then who could feel it as well, but who said that because it didn’t appear on the mammogram, and it hadn’t grown in 6 months that I should just return for my next scheduled mammogram. Fast forward to September last year. I had a core needle biopsy of the mass behind the areola and it came back as being a benign “complex” fibroadenoma. If you look this up on the internet, you’ll read about how fibroadenomas are indeed benign, and don’t ever turn into cancer but that they are a “marker” for cancer, meaning, cancer could be lurking in the surrounding tissues.

My surgeon assured me that this would be a simple excisional biopsy and that he was 99% sure that everything would be fine. I had the surgery under general anesthesia, and even though I knew my doctor had the results in his office the following Monday, I waited for my Wednesday appointment. He had assured me that everything was going to come back clear. Well, call it a sixth sense, but I did ask my husband to meet me at the appointment that day. We sat down at my surgeon’s desk and we knew immediately from the look on his face… it wasn’t good news. His eyes teared up as he told us that I had invasive breast cancer and that I would need surgery and chemo therapy. He told us that he too was blind-sided by this. He told us that the excision was like a hard boiled egg, the yellow being the olive shaped fibroadenoma, the white being where the cancer was found, and the shell being where the margins were left unclear, meaning there was more cancer in there. They hadn’t gotten it all and it was in the lymph channels and veins now.

My head was spinning, barely processing everything he was telling us and feeling as though someone else was sitting in that chair and I was just looking on from above. This can’t be true!? He told me everything would be okay! How could he have been so wrong!? My husband and I left there and walked to the hospital chapel and wept. It was a horrible day. It was October 1st, 2008, the first day of Breast Cancer Awareness month.

Koryn's Jewelery to benefit Breast Cancer Causes

To be sure there was no cancer in the other breast, I had a bilateral breast MRI. There on the right side, near the arm pit, was found, another mass. A subsequent biopsy of that area showed infiltrating lobular carcinoma. Right where the palpable lump had been two years prior. I was just sick inside. These two areas were so far apart from one another that a lumpectomy was out of the question. They would have to remove my right breast. I cried for days and woke up many nights in tears.

I just couldn’t believe this was happening to me. I was only 44 years old. Then there was the question of whether or not it had entered my lymph nodes and I would have a sentinel node biopsy the same day as my mastectomy. I put on my brave face and went into this surgery knowing that the cancer would be gone from my breast we would tackle whatever came next with the same courage and strength, which I somehow managed to muster, albeit very shaky! I had a tissue expander put under the chest wall muscle where they removed all the breast tissue, and after chemo treatments would later have it replaced with a silicone implant.

For about 3 months I went in for weekly injections of saline to expand it to the necessary size. The node biopsy came back all clear, thankfully, but the pathology from the mastectomy revealed that I had not two, but 5 tumors, three of which were never seen on any imaging tests! That was very scary to me (and should be to any woman who has dense breast tissue). My tumor was also a grade 3 and contained the aggressive Her2Neu protein over expression, putting me at great risk for recurrence and metastasis, or spreading to other areas of the body. I spent November and December healing from surgery and developing a game plan of attack with my oncologist.

Chemotherapy would begin on New Years weekend and continue for one year. The first 18 weeks I was given Taxotere, Carboplatin and Herceptin. The Herceptin would then continue through December of 2009. Every week I go to the chemo room, 50 miles and two hours in traffic through Washington D.C. Every third week I would get very sick from treatment, and battle extreme nausea and headaches. My hair fell out and my eyebrows and lashes thinned. My fingernails and toenails bled from underneath and my nose bled severely a few times. I developed scabs inside my nostrils and my eyes and fingers twitched for months. I was a mess. I attended a look good feel better class through American Cancer Society and found some great looking wigs that were very natural and made me look healthier than ever. Chemo gave me a very smooth complexion (although a little gray at times). I learned for the first time how to pencil my brows and then to my surprise, about 2 months after my toxic treatments ended, my eyelashes did all fall out. My toenails and fingernails began to fall off too. A cruel and humbling time to be sure! But through all of this experience I met some amazing and courageous women also fighting breast cancer. I became a chemo angel to another woman on the other side of the country who needed support. I built a network of support and made lifelong friends who share this common bond called breast cancer.

This summer I found the strength to phone the doctor who had initially referred me for a mammogram 2 years ago but who never saw the line in the radiologists report that said “incidental mass retro areola.” I only found that report after last year’s biopsy and after I requested all my prior mammogram reports. I had to know for myself how something like this could have been missed, and I did find it. I have begun making it my mission to tell every woman that when she gets her mammogram to request a copy of the written transcribed radiologist’s report. Mine had information in it that could have spared me all of this and yet it slipped through the cracks. My doctor thanked me for educating her and I asked that she please tell her patients to get their reports. Do not settle for the letter in the mail that comes to you saying return next year – you are all clear…Doctors aren’t perfect. They miss things all the time. You must be your own health advocate and bring things to your doctor’s attention when something doesn’t sound right to you. A so-called incidental mass, in my case, turned out to be not so incidental. It was cancer.

I had my implant surgery 5 weeks ago. It was a relatively painless procedure under general anesthesia. I looked so forward to having the hard baseball like expander removed and something squishier and softer take its place. But when the bandages came off 2 weeks later, I cried all the way home. For the first time I was really facing the fact that I would never truly have my breast back. There is no nipple, only an ugly 5 inch long scar across the front of it. There is no sensation. My breast is as numb as if I had gone to the dentist and it will always be numb, according to my plastic surgeon. There is no sexual sensation, no feeling at all. It’s gone. I cringe when I hear someone in the media claim that in getting a mastectomy a women gets all new boobs that will be perky until she’s 90. That is not true. She does not get a new breast – she gets a shape to fill her bra cup so her clothing will fit and she can appear normal. But every time she wakes up and looks in the mirror she is reminded of all she has lost. In my case, I am treated at an Army hospital where I see amputees on a weekly basis and am comforted in the fact that my loss is much more bearable than theirs, and much more private. Their courage inspires me and their resolve gives me strength.

This is a strength I hope to pass along to other patients who are newly diagnosed and frightened that they will never be the same again. Cancer has made me a different person than before, but not just in a physical sense. It has made me an educator, and advocate and a warrior against the medical practices that lead to negligence. It has made me more compassionate and it has definitely given me a new appreciation for life! I don’t want to waste one minute of it now!

~Koryn H.