- Posted October 10, 2012 by
This iReport is part of an assignment:
Tested for the breast cancer gene?
A VERY IMBREASTIVE SUBJECT
With no history of breast cancer in our family, we were shocked to find that my youngest sister had breast cancer. She was told by her baby’s pediatrician that one of her breasts probably wasn’t producing milk properly due to a clogged milk duct. Years later, she discovered that she had Stage III breast cancer.
She began treatment right away and underwent a mastectomy, chemo, and radiation. We watched her navigate the health system as a single parent with no health insurance and three children. We did what every family does. We cried with her, held her, and encouraged her to fight. We read books to our little nieces trying to explain that their Mommy was very sick and giggled as we all tried on wigs.
I will never forget watching the chemo formula hanging from a glass bottle because it would literally melt an IV bag as it dripped magic poison directly through a port into her heart. The chemicals were too hard on her veins. I will never forget seeing all of the skin peeling from her hands or watching her learn how to give herself injections to boost white blood cells. My sister is my hero. Watching what she went through had a huge part to play in the health decisions that would soon effect my life too.
My sister’s doctor urged her to be tested for the BRCA gene. He explained that if she was negative, it would not be necessary for the other siblings to be tested. Her test results were negative. We all sighed a huge breath of relief.
I should be OK I thought, but that little voice inside my head kept saying, remember that lump they removed years ago? I was also told that it was probably an old clogged milk duct. Even though it was not malignant, I now know that this was a big warning sign for me.
After my sister’s diagnosis, and with my previous surgery and fibrocystic breast disease, I decided it was time for a very thorough breast exam, something in addition to my yearly standard x-ray mammogram. My breasts were large and dense and it was very difficult for technicians to read my x-ray results. Working with Doctors, Marylin Leitch of UT Southwestern Medical Center in Dallas and Dr. Steven Harms, who was the primary researcher and developer of the 3D Rodeo Breast MRI scanner, they found and removed another tumor that looked very suspicious.
I received the dreaded phone call on a beautiful fall day in 2006. No one ever forgets the call. The doctor would like to speak with me about the test results from my recent breast surgery. The nurse explained that I had a very rare tumor, a phyllodes tumor, but that it was not malignant. She wanted to know how quickly I could come back for a follow-up appointment. In a daze, I went back to our lake house to “Google” phyllodes tumor. I didn’t even know how to spell the word that would ultimately change my life. The only thing my brain could register was the worst case possibility as I read the definition. Phyllodes tumor: Very rare. If malignant there is no treatment. Chemo and radiation don't phase it. It likes to return. If malignant, typically 3 years to live. My heart exploded with fear. What if it comes back?
This began five years of living in fear for me and my family. Through genetic counseling, I was told that my risk ratio was about 28%. By taking Tamoxifen and going every six months for either a breast MRI or mammogram, and routine physical exams, they could reduce my risks and watch me very closely. I would be labeled a “high risk” patient. Although Tamoxifen is truly a wonder drug, I certainly had many side effects. It was very hard on me. The bi-yearly tests were very expensive and without insurance, I am certain that I would not have been able to afford proper recommended care. Still, the hardest part for me, was keeping my own personal “monster” locked away for six months at a time. Every six months, the “monster” threatened to come out of the closet and attack me. After every negative test, I locked “him” back in the closet. “He” was always lurking in the background of my life, trying to drain me of happiness. I knew sooner or later, “He” would get me.
Finally, after four and a half years on Tamoxifen and multiple false alarms, I went in for my six month check-up. I asked my doctor what new replacement medicine she would prescribe once I could no longer take Tamoxifen. She explained that there was no new miracle drug to give me and that whatever benefit my body had derived from Tamoxifen would stay for many years. I left her office in shock and fear all over again. How could I still be considered high risk without medication?
Fast forward six months to November 2010. Two weeks before my daughter’s wedding, I went in for my six month check-up. A couple of days later, I got a call. The doctor would like to run some more tests. It’s probably nothing the nurse said, just a precaution. The technician performing the sonogram is not happy and wants another opinion. As I lay on the examination table, staring at the image on the screen with my husband patting my hand and the nurses comforting me, big tears rolled down my cheek. This is it, I thought. The doctor will come in, take one look at the screen and tell me the words I have dreaded to hear so long.
The door opened and the doctor walked in. She examined the screen and turned to me smiling. “Well, Mrs. Emery. Good news. We don’t believe this is anything to worry about. We will just continue to monitor you as a high risk patient and see you again in six months.”
At that moment, something clicked inside of me. I knew that I could not live in fear one more day. I knew that no matter what, I had to have my breasts removed. They were ticking time bombs about to explode any minute.
By the following Monday, I was sitting in Dr. Michael J. Cross’s office. He is a Surgical Oncologist specializing in breast disease. Dr. Cross examined a series of x-ray and MRI images of my breasts spread across the light boxes in his office. He turned to me and said, “I really don’t know you very well but why are you doing this to yourself? You are very high risk. Have you ever thought about removing that bad breast tissue and having prophylactic surgery? I will be happy to speak to the insurance company on your behalf. We can save them thousands of dollars in continuing high risk treatment.”
All of the signs pointed in one direction for me from that day forward. My next meeting was with Dr. Heath Stacy, my future plastic surgeon. Dr. Stacy explained all of my surgical options. He and his wonderful staff showed me photos of other women, many who had undergone full mastectomies and reconstruction for cancer. They explained the time frame for healing and how to care for the incisions. I wasn’t trying to look like a model. I just wanted to feel “whole” again.
Now, all I had to do was hope that my insurance company would see the merit in helping me to undergo this procedure. Once again, I waited on a very important phone call. I was sitting in an airport in Montreal when I got the call.” Mrs. Emery, this is Dr. Cross’s office. Your insurance company has approved the surgery. If you still wish to have the procedure, we can talk about dates.” “I’m ready”, I said. “Let’s book it.”
Two weeks after my daughter’s wedding, they rolled me into surgery. I have never once looked back. I have never regretted my decision. I live free of fear. My “Monster” is dead.
I realize that many women today are opting for preventative surgery for breast cancer. Unfortunately, most of the focus seems to be on women who have tested positive for the BRCA gene. I am here to remind you that there are many people, like myself, who do not fit into that category but who are still considered to be very high risk. I want to remind men and women that just because you do not test positive for the gene, does not mean that you are not high risk.
My dear friend, Lisa Sousa, who I met through a Facebook page called, “Prophylactic Mastectomy” was going through surgery and reconstruction during the same time frame. She and I both had a rare phyllodes tumor. We discovered a wonderful group of women, just like us, who desperately needed support from one another. We quickly bonded with each other and soon realized the need for someone to help educate and support both emotionally and financially, other women just like us.
We have seen gut wrenching photos of women with extreme courage who have shared private photos of botched surgeries. Many of these women were so afraid to keep their breasts that they hired any doctor who would agree to remove them. They could not afford the best care. Lisa and I have started a foundation to support men and women who are living in fear or are considered high risk. If you or someone you love is considering preventative surgery or if you wish to support our cause, please visit our new web site.
In some cases, not having the money for travel or out of pocket medical expenses can make the difference between wanting surgery but fearing that they cannot afford it. Little things like a floral arrangement delivered from all of us can cheer someone on. A kind word or suggestions for ways to prepare for surgery can help immensely. We want to supply links to trusted sites that supply comfortable clothing and accessories post surgery. Are you having a hard day? Is your husband or significant other not supportive? We are here to listen. We are not doctors and do not give medical advice but we do care and we want to help. The site continues to grow as more and more men and women seek support. Please join us at: www.mydestiny-us.com. You can also find us by typing in “Prophylactic Mastectomy on Facebook.
In conclusion, I would like to ask CNN to strongly consider a story about “Previvors” but not just people who have tested positive for the BRCA gene. There are other high risk patients out there too. I am one of many.
Kim Adams Emery
Mother, Daughter, Wife, Sister, Aunt, and President of Aviation Concepts, Inc.