MY CANCER & BIA-ALCL STORY

My name is Raylene Hollrah; I am a 2 time cancer survivor by the age of 40. For those of you reading my story that have cancer, we have a connection. We know what it’s like to have the carpet pulled from under our feet; to see our dreams shattered like a picture window looking at our future. What’s so frustrating is that we don’t know who threw the brick. Every day when we wake up, we see our lives in shattered pieces. It’s a constant reminder of the cancer that lives in our lives and without the help of our family, friends, the medical community and ultimately God, we aren’t really sure if we have the strength to clean up the mess that’s been made.

I am a breast cancer survivor. I’m not the first and it’s my goal in life to make sure I am not the last.

I had the perfect life; a supporting husband, a beautiful daughter, and a home surrounded by nature. My career was taking off and success was following. Then my window was shattered.

My OB-GYN was helping us the second time with fertilization, we were hopeful for our next child. The blessing of Allyson Renee Hollrah came into our lives 3 years earlier, we were so happy. We were seconds away from in vitro fertilization when we received the news that our daughter would be here in 9 months.

During the second process of fertilization, my doctor recommended I get my annual breast exam early. My doctor felt a lump during the exam and ordered a mammogram immediately. The results came back fine but we decided to proceed with an ultrasound just as a precaution. After the ultrasound and biopsy I could see the look in my breast surgeon’s eyes, her demeanor changed. She told me the three words I did not want to hear, “you have cancer.”

“You have cancer.”

I was 33 years old and no family history of cancer. On April 20, 2007 I chose to do a bilateral mastectomy without reconstruction, I then followed up with a summer full of chemo. I lost all my hair, I lost my chest but I never lost faith.

It’s a hard struggle when your chest is removed. It is definitely one of the parts that identifies you as a woman. Even though everyone tells you how beautiful you are, you still feel like there’s something missing. My amazing husband, Jayson, knew just what to tell me and has been an inspiration ever since. Jayson took one look at my chest and said, “the only thing I see missing … is cancer.”

I was struggling feeling like a woman, something was missing. Eighteen months after my bi-lateral construction, I decided to look at options for breast reconstruction. This decision was not quick; it took me three visits to plastic surgeons before I decided to move forward. I met with a plastic surgeon that was highly referred and I decided to move forward. What was the difference in that visit? He took his time in listening to me and what I wanted (a natural looking chest). We discussed the options and decided on the FDA-approved silicone textured cohesive breast implant, a newer and apparently the safest implant on the market. I signed up to be a part of the CARE study, mandated by the FDA for reconstruction patients using the Allergan implant. It was a 10 year study and I could help other women going thru reconstruction with the information on my journey.

I had a full reconstruction done in 2008.

Smooth Sailing, right?

Jayson and I welcomed our next child, Ryan, into our lives. In May 2012 we received a call from the school social worker and told how Ryan lost his mother to cancer when he was 5 years old and then 6 years later he was told his step-father had cancer too. Ryan had been moved into foster care, but we had different plans for him. We officially became Ryan’s guardians on July 26, 2012.

The next couple months would be a delight; after all we had been through. We knew that God had blessed us with another child and after our first battle, and victory, over cancer we were living every day in the reality that He loves us despite our circumstances and we were going to cherish the days spent with family and friends.

Life stayed “normal” for a while, but my journey was, and is, far from over. One day I was getting ready for a well-deserved massage when I noticed that one of my implants was slightly swollen. I took note of this, but as the days went on it exponentially became worse and within 4 days my right chest tripled in size. After a CT scan at my local hospital, I was advised to go to my plastic surgeon’s office immediately. Through testing and draining it was reported that there was no cancer but my surgeon suggested that the implants be removed as to not cause infection later down the road.

Cancer, again

Of course, I wasn’t crazy about the idea but I knew, or at least thought I knew, that implants were a safe option and that I could just replace them. After the implants were removed, everything was sent off just to make sure there was no more danger. Ten days later I went for a post-operative checkup were my doctor told me I had BIA-ALCL (Breast Implant Associated-Anaplastic Large Cell Lymphoma). I was the 25th documented case in the US and 61st in the world.

Cancer shattered my reconstructed world again. Diagnosed on a Friday and flew out the very next day to MD Anderson in Houston, TX. The next 5 months were spent in Texas removing this man-made cancer from my body.

How did I have a medical device in my body that the FDA has linked to Lymphoma in 2011, yet I was not notified? Why was I dropped from the mandated study by the FDA after year four with no notification or reason why I was dropped from the study?

Today