Karen's Story

Breast Cancer: Affecting one million women a year

Breast Cancer Survivor Karen E Jones

I am a 2 ½ year breast cancer survivor. Luckily, my cancer was caught by mammogram. It was stage 2 cancer. It was a very rare type of breast cancer. I was diagnosed with Paget’s Carcinoma Disease of the breast. There is only about 1% of women that have this type. It is a very aggressive type of breast cancer. My message is simple: Do not ignore symptoms/changes in your breast, no matter how insignificant they may appear.

There was no history of breast cancer in my mothers side of the family. With no family history of breast cancer and no reason to believe my life was about to change dramatically. 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. I know that is how I felt.

It all began so innocently! I schedule myself for my yearly mammogram. I had been having a worrisome itch on my nipple which I thought was nothing and was not worried about it since it was time for my yearly mammogram. To my shock, 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’s when time stood still. I drove back to my workplace in shock and disbelief. Things started happening so fast, the next thing I knew I was having a biopsy. It was 2-14-2008 (Valentine’s Day) I should have been getting candy and cards, but instead I was having a biopsy. After days of anxiety waiting for the results, it was confirmed I had breast cancer. It was first thought that the cancer was only in the duct area of the breast. So I was schedule for a lumpectomy and lymph nodes removed under the arm on the left side.

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 . I asked to have another biopsy. There were so many valuable lessons I learned along the way. First and foremost, become your own patient advocate. I was misdiagnosed. It was Paget’s disease. Breast cancer is often detected by a lump. So that is why is it easy to overlook this kind of breast cancer. Paget’s disease starts in the breast ducts and spread to the skin of the nipple. Many doctors have not seen this form of breast cancer as it is quite rare. A mammogram did not detect the cancer cells in the nipple area.. If the ductal carcinoma in situ had not been detective by a mammogram I would be dead by now.

I was then 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 the word “Chemo” . I experience shock, anger, and fear, like many newly diagnosed cancer survivors. I cannot die I am a single mother of three daughters. Once I grappled with these emotions. I attempted to take control of my life. My goals were to complete my treatments as soon a possible. My doctor took the aggressive regime of 6 chemotherapy treatments in three week increments. The high dosages were in response to the type of aggressive cancer. I cut my long hair short in preparation of chemo. However, no amount of amount of knowledge of the disease or preparation can truly make you ready for this stage of treatment. The only good thing about chemo is that you don’t have to shave your legs… 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. It was a emotional roller coaster of hope and despair not only for me but my entire family.

At the time of my treatment, my 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 wouldn’t 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 my femininity was being threatened, as much as my life. After recovery I had breast reconstruction surgery. Accepting yourself after mastectomy and breast reconstruction takes some serious self-love, and you won’t get there overnight. When you start feeling badly about your body, 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 17 treatments of Herceptin by IV in three week increments. And now I have been taking immune injections every month. This is a clinical trial injection that is suppose to build up your immune systems so if my body is invaded by cancer cells the good cells will fight them off. I only have two injections left to take.

I am doing well now. Slowly, I regained my strength, prospective on life and my hair! It is now thick and very curly. And I am very grateful. What I want anyone who read 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 membership 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 a 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 mammograms . I would also like to see more help to the women who cannot afford medical treatment. I know from my experience the medical bills can be overwhelming. I had medical insurance and I am still left with the burden of unpaid medical obligations. This is my favorite quote “ 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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