by Linda Jackson

We have brought Breast Cancer out of the closet and into the media and have made it okay to talk about mastectomies, reconstructive breast surgery and breast prosthesis. These are no longer "tabu" subjects. We have come a great distance in creating Breast Cancer awareness, but not nearly far enough. We have worked diligently at promoting self awareness and education, but there is so much more work to be done, so many women who have not been reached...we have only just begun the education crusade.

  "Breast Cancer". It is everywhere we turn—on television, in the news, on the web. It is found in articles every month in women's magazines and in the media promoting events such as the Komen Foundation Race for the Cure^®. It is published in autobiographies and discussed in personal interviews with survivors. Breast Cancer touches all women in some way—if not personally, then through the experiences of a mother, sister, daughter or friend. Today we are inundated with breast cancer in one form or another and we can't help but accept that there is a world wide epidemic. We are deeply saddened when we hear of a friend or loved one being diagnosed and we all hope it will never happen to us—we believe it won't happen to us.

   Breast Cancer has not always been so well understood, accepted nor so easily and openly talked about. Thankfully, attitudes have changed, more than you could possibly imagine. Today following a diagnosis of Breast Cancer we most often have acceptance-openness-awareness-options and support. Unfortunately for thousands of women this has not always been the case.

My Story

   In 1985, at the age of 36 when I was first diagnosed with breast cancer, the perception of this disease was quite different. There was no breast cancer awareness, there was not an understanding of the disease, no support systems and definitely not many options available. There were however many misconceptions.

   For me the first was that at age 36, I was perceived too young to be diagnosed with breast cancer. The second, was that following a mastectomy I would be left devastatingly mutilated and physically impaired. The third, that I would most likely swiftly, in great pain and suffering succumb to the disease. And fourth, that it would change who I am. I am walking, talking and living testimony to you today that yes, having breast cancer did change things and alter the course of my life, but not in the way you might imagine!

The Lump

   I was fortunate to have inadvertently found my own lump. I was not practicing breast self exams (BSE) and I was considered too young at the time for annual mammograms. I had none of the risk factors (which it turns out is often the case). I was healthy, very physically active and busy with my daily routine of being a daughter, wife and mother of three.

   One day as I stepped out of the shower and was drying with my arm over my head, I caught a glimpse of a lump at the top of my right breast. I studied the nickel sized, spongy lump, put my arm down and it disappeared. I raised my arm again and the lump reappeared. I did this a dozen times and I remember thinking to myself that I would watch this for a few days—I was sure it was nothing to be concerned about. That it might be breast cancer never even entered my mind, there was no reason for such a concern, after all I was only 36 and breast cancer happened to women when they were old.

   Three days later, at the urging of a close friend, I sat in the office of my OBGYN. Upon examination, he felt there was no reason for concern. However, just to be on the safe side he scheduled me to see a surgeon to have the lump aspirated (the fluid drained).

   Four days later when the surgeon was unable to extract any fluid, he recommended that I have the lump surgically removed. He was also confident that there was no reason for concern, but he did want to take a closer look at the solid mass. I was scheduled for an outpatient biopsy procedure to take place early the next morning.

   The minor surgery which was supposed to take 20—30 minutes, lasted almost two hours. Because I was awake and alert throughout the procedure I was acutely aware that things were not going as was anticipated. It was taking much too long and what began with a sunny, chatty atmosphere in the O.R., had abruptly cooled to quiet disconcertion. Without one word spoken, I knew.

The Diagnosis

   Finally, my Doctor sat me up on the end of the table and told me the tumor was malignant. I was offered two options a mastectomy or a lumpectomy with follow up radiation. My physician recommended a modified radical mastectomy and wanted to schedule surgery for the next week. I was completely STUNNED. Nearly everything he was saying to me was going right over the top of my head. I could see his lips moving but I could not process or absorb his words. The mind, like the body, goes into shock to protect us.

   For the next week I went through a series of roller coaster emotions. "I will not accept this, they are wrong. What if I didn't do anything at all and ignored the lump, it might go away. Why is this happening to me? I am too young to die. Everyone will pity me." Eventually I worked my way to acceptance—I realized this is something I must do, I had no choice. I made up my mind that I would fight and do everything possible to get well.

   Because women did not talk openly about breast cancer in 1985, there were few resources available, little information and virtually no support. I was aware of one family friend who underwent a mastectomy and she had died. Unfortunately, I went into my surgery with no information, no preparation, no support system and no idea what to expect...I was terrified. Later I would discover that if only I had been educated I would not have been so frightened.

   Shortly out of recovery, I woke up in my hospital room and quickly realized where I was. I immediately burst into tears, frightening two friends who were sitting by my bedside. They did not know what to say to me. Even though I had wonderful friends and family around me, I felt completely alone.

   The surgeon believed he had successfully removed all of the cancer. The margins were clear with no lymph node involvement, so my prognosis was very positive. I was given a clean bill of health. However, the psyche is sometimes the last to be convinced.

   I was amazed at how soon I felt well enough to get up and move about the hospital halls. I was moderately stiff and sore, but very capable of dressing myself, putting on make up and styling my hair. I actually felt pretty good and in two days was ready to go home. Once home, I almost immediately resumed my normal household routine. I found I tired easily and slept more than usual, but aside from that I was pleased with how quickly I was healing and how much I was able to physically accomplish.

   My parents visited—my sister came for a week—my husband was helpful and the children were home from school for summer vacation. Everything was fairly "normal", normal for everyone except me. I was spending my days preparing to die...I was on a mission to label and identify every item I owned. I felt compelled to get my house in order, my ducks in a row, just in case!

   I hesitated to plan very far ahead. I contemplated not having the two crowns done that my dentist had recommended. I picked out music for my memorial service and even went so far as to have a photograph taken to be used in my obituary.

   As the days and weeks went by and I became stronger in both body and mind, I began to believe that maybe I was really going to be okay, that it just might be possible to survive having cancer. I resumed all of my activities, playing tennis, snow skiing, gardening and family life. I discovered that time really does heal and with each month that passed leaving me healthy, I felt more hopeful that I was truly free from cancer.

   I began hearing more and more about breast cancer as celebrities came forward with their own experiences. The more these women talked about their own breast cancer, the more acceptable the disease became. I remember the kinship I felt to actress Ann Jillian, who underwent bilateral mastectomies. She was near my own age and I was very impressed with her openness about her own breast cancer. Her candid acceptance and positive attitude were a great inspiration to me.

   By now statistics were proving just how beneficial both mammography and self breast exams were in early detection. The sooner a breast tumor is found the higher the survival rate. Proof that women need to take responsibility for their own body and well being. Support groups and organizations began popping up all over the country to provide women with information about breast cancer.

The Second Time Around

   In the summer of 1989 I was approaching my four year anniversary since diagnosis, when during a self breast exam I discovered a small hard nodule under my left arm. This time I by-passed the OBGYN, going directly to my surgeon. With my history he scheduled a biopsy immediately. It was deja vu as I entered the outpatient O.R. again. As devastated as I was, there was a certain calm about me this time. I believe it was the education, the information and understanding that I brought with me this time around. I felt confident that even if my cancer had come back, I had already beat it once and I could do it again.

   The diagnosis was difficult for me to hear, the lump although very different from my first one, was malignant. The tumor was stage 2B, a reoccurrence from the original site. Recommendation: total mastectomy! [continued ]