Karen Jones breast cancer story

by Karen jones
(Alexandria, La. USA)

Breast Cancer Survivor

Karen E. Jones

I am a two and a half year breast cancer survivor. Luckily, my cancer was caught by my yearly mammogram and was classified as stage two cancer. It was a very rare and aggressive type of breast cancer that is called Paget’s Carcinoma Disease of the breast. Only about one percent of women are diagnosed with Paget’s Disease. My message is simple: Do not ignore any symptoms and/or changes in your breast, no matter how insignificant they may appear.

Considering that there is no history of breast cancer on my mother’s side of the family, I had no reason to anticipate that my life would be so dramatically changed.
In my own mind, I became a Breast Cancer Survivor the moment I received my diagnosis. I think human nature makes us think that we have been dealt a death sentence when we’re told we have the “C” word.

It all began so innocently! I scheduled an appointment for my yearly mammogram. I had been having a worrisome itch on my nipple but since it was time for my yearly mammogram, I did not pay much attention to this issue. A few days after the mammogram I received a call from my doctor that an abnormality called micro calcifications had been detected and I needed to have another compressed mammogram. That is when time started to stand still. I drove back to my workplace in shock and in disbelief. After the follow up exam, things started happening so fast that I was spinning. Before long it was Valentines Day 2008 and I should have been getting candy and cards, but instead I was having a biopsy. After days of anxiety waiting on the results, it was confirmed that I had breast cancer. The doctors originally thought that the cancer was only in the duct area of my breast, so I was scheduled for a lumpectomy and to have the lymph nodes removed from underneath my left arm. As I was recovering from surgery, my nipple area began to get worse. I went to see the doctor several times and was told there was nothing wrong or abnormal each time. I eventually insisted on having another biopsy, this time on my nipple. My concerns were confirmed. I was misdiagnosed. I had Paget’s disease which is a difficult cancer to detect because it often starts in the breast ducts and spreads to the skin of the nipple. This is when I learned the valuable lesson to become your own patient advocate.

Soon after being re-diagnosed, I was referred to a breast specialist in Baton Rouge, LA. My first visit to the oncologist/surgeon was mind boggling. All I heard as “yada, yada, cancer.” Then I heard the word “Chemo.” Hearing this word caused me to instantly experience shock, anger, and fear. Considering that I am a single mother of three daughters, death was my biggest fear. Once I came to grips with these emotions, I attempted to take control of my life. My goals were to complete my treatments as soon as possible. My doctor took the aggressive regime of six chemotherapy treatments in three week increments. The high dosages were in response to the aggressiveness of the cancer. I cut my long hair short in preparation for chemo. However, no amount of knowledge of the disease or preparation can truly make you ready for this stage of treatment. My treatment plan was very hard, I was very ill in response to the drugs, along with the emotional trauma of losing all of my hair, eyelashes, and eyebrows. Although, not having to shave my legs was one good thing about chemotherapy, though.

It was a emotional roller coaster of hope and despair not only for me but for my entire family. At the time of my treatment, my youngest daughter was only 11 years old. I tried to keep a lot of the stress of the situation away from her because I knew she had a lot going on in her young life without having to worry that her mother might be getting seriously ill. She was told about it, but I tried to keep my attitude light and breezy with her so she would not be unnecessarily alarmed about it. I think it helped me to feel more positive just trying to give her and my other two older daughters the impression I was not falling apart at the seams.

Next was the mastectomy. It was difficult for me because it was so disfiguring. I felt like my femininity was being threatened just as much as my life. After recovering from the mastectomy, I had breast reconstruction surgery. Accepting yourself after mastectomy and breast reconstruction takes some serious self-love, and you will not get there overnight. When you start feeling badly about your body it is just important to remember that the cancer is gone and that is all that really matters.

I was also starting to feel like a pin cushion with all the test and blood work and treatments. Since the type of cancer I had has a high recurrence rate, I was given seventeen treatments of Herceptin by IV in three week increments. Currently, I am taking immune injections every month. This is a clinical trial injection that is suppose to build up your immune system incase my body is invaded by cancer cells again, the good cells will be able to fight them off. I only have two injections left to take. I am doing well now. Slowly, I am regaining my strength, prospective on life, and my hair, which is now thick and very curly. I am very grateful.

What I want anyone who reads this story to take away is this: my cancer was totally undetectable by a manual breast exam. My mammogram saved me from possible death. Please, if there is a woman in your life whom you love, get her to have a mammogram every year. Make it a test of love if you must. You know, “if you loved me, you’d get one”. Mammography save lives, maybe your mother’s life, you daughter’s life, maybe even your own life. I know it saved mine!

Becoming a breast cancer survivor is bound to teach you a few life lessons. When you hear the words, “You have breast cancer,” you join a club nobody wants to join. Yet the members of that club can become some of your most intimate friends. When you meet a new member, you can instantly connect with them. The bonds of membership in this club are cemented with common experiences, shared struggles, celebrated victories, and words of advice.

I hope I will live to see a cure for this dreaded disease. I would never want anyone to have to go through what we’ve all been through. I thank God each and every day for his many blessings and for letting me see another beautiful sunrise or sunset, or to even be alive to look upon the faces of my loved ones. We all worry about reoccurrence, but after a major health crisis like ours, I think we all appreciate what we have and rejoice in the second chance we have been given. I also believe we are stronger women after going through all the things we have had to do to save our lives.

Please pray for me and all other survivors of this dreaded disease. I hope my story can help to save one life by encouraging someone to go for their yearly mammogram. I would also like to see more help provided to women who cannot afford medical treatment. Even with medical insurance, the burden of unpaid medical expenses is extremely overwhelming.

My favorite quote is “A women is like a tea bag - you never know how strong she is until she gets into hot water.”

Karen E. Jones
Alexandria, La.

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