Lillie Shockney, R.N.
Education and Outreach Director
Johns Hopkins Breast Center
Vice President and Co-founder of  MSDBC
Breast cancer survivor since 1992

Breast cancer is the most feared disease of all women. Even though statistically, more women will die of heart disease than breast cancer and overall run a higher risk of developing cardiovascular disease or some other serious disorder, for decades breast cancer has remained a greater threat psychologically. As a student nurse who attended a three year diploma nursing school program in the early 1970's, I came in direct contact with this fear in a way that has stuck in my mind to this very day. At the age of seventeen, I experienced the recovery room, learning how to provide post-op care to women having surgical procedures, including breast surgery. This was at a time when breast biopsies were performed under general anesthesia. The patient signed a consent form that stated she would be undergoing a breast biopsy which would be immediately sent for frozen section. If the biopsy results were positive for breast cancer, the surgeon would resume surgery and perform a total radical mastectomy; if it was negative he would close the biopsy incision considering the surgical intervention completed. The patient would not know the results of the operation until she awakened in the recovery room. I recall my first recovery room patient I was caring for who had undergone mastectomy surgery. As I was wrapping the blood pressure cuff around her arm it must have jostled her enough to arouse her. Though still very groggy her instants were strong. She grabbed my hand and said, "Please, tell me it isn't gone - tell me my breast isn't gone!" And I froze because it was gone and I didn't know what to say. I stood there staring at her, silent. She asked me again more anxiously than before and was very frightened, then moved her unaffected arm up to her chest and felt her bandages. Then she cried. I cried too, not knowing what to say or do or how to give this woman comfort. Though I was young I realized how blessed I was to be the student nurse and not the patient lying there on the stretcher. An hour later I was involved with another woman who had undergone breast surgery. Her biopsy was negative. She awakened in the recovery room in a similar way, with the same look of fear on her face. When she asked me if her breast was gone I was able to comfortably give her good news and tell her that "They both were still there." She said, "Oh thank you, thank you" as if in some way I had persuaded the pathologist to record the word "benign" on her specimen report. I was taught in nursing school the importance of being empathetic with my patients, mourning with my patients who had lost their breast to cancer, and share in their suffering and depression. It would have been wrong to have done anything less... Though many improvements have been made in the diagnosis and treatment of women with breast cancer, the fear of this disease and its treatment remain. Women have biopsies done under local anesthesia and if breast cancer is found, they have more surgical options than breast cancer patients decades before them. Breast cancer is no longer a disease that is hushed. Women have access to support from other survivors and don't have to endure their fears and pain along. Seven years ago, at the age of 38, I was diagnosed with breast cancer. Faces of former patients I had cared for after breast cancer surgeries flashed in front of my face for several days after I got my own pathology news. I also didn't learn about my pathology results through traditional methods. Rather than waiting for my surgeon to return from a business trip to review the results with me personally as he had requested, I chose to pull up my own results ---- a temptation for nurses having procedures done at the facility where they work. I was so confident that the results would be benign that I thought I'd save my family three more days of worry while waiting for the official results from my doctor. I pulled up the report and read the word cancer twelve times. I felt like I was staring at the Grim Reaper. My heart was racing and my mind felt confused and overwhelmed with fear. I was truly living in limbo and functioning in a fog until my doctor returned and explained to me what would be needed to help ensure that I would be a long term survivor, my primary goal. I set out to empower myself with information about breast cancer treatment options so that I could directly participate in the decision making about my care and treatment. Empowerment of this kind also helped me regain control of my life which for a period of time from reading my path report to determining the definitive treatment plan, was very much out of control. Refreshing myself in the various improvements that have been made in breast cancer surgery was relieving and reassuring. Approximately 75% of women diagnosed with breast cancer are good candidates for breast conserving treatment. 90% of women diagnosed today become long term survivors if they follow the treatment regimen in keeping with the NCCN treatment guidelines too. But the stigma associated with breast cancer seemed to have continued from decade to decade, especially as it relates to a woman's femininity being threatened by the treatment required to make her cancer free. I, too, felt threatened by the type of surgical intervention that was placed before me. Due to the nature of my cancer (multifocal disease) I was strongly advised to undergo a mastectomy and discouraged from pursuing breast reconstruction for valid medical history reasons. I had no difficulty agreeing with this recommendation, holding steadfast to wanting to accomplish my long term goal of survival. Something that I hadn't counted on, however, was how much of my self image was tied up in my breasts. My bra size was 44D. I was oftentimes identified as the woman with the large breasts. I liked having large breasts too. They were important to my sexuality and the way I saw myself as a woman. This image of myself was about to change dramatically. I tried to imagine myself with one breast and it scared me... I was blessed with a supportive family which included a loving husband who shared my goal. He didn't care whether I had breasts or not. His concern was my survival. He explained to me that women interpret mastectomy surgery as losing something valuable - losing their breasts. And though that is an unfortunate thing, they are focusing on the wrong thing - seeing their glass as half empty instead of half full. He told me, "Women see mastectomy surgery as losing their breast. That's not what is happening. They are actually undergoing 'transformation surgery'. The surgeon's mission is to transform you from a victim into a survivor. You are exchanging your breast for another chance at life. That is a positive thing." And I realized he was right and from that day forward I never thought of my surgery as losing anything other than losing the cancer. As Director of Education and Outreach at the Johns Hopkins Breast Center, I'm now in a position to foster this type of thinking among healthcare professionals and our patients. Each woman is empowered with information about her disease and its treatment so that she is able and ready to directly participate in the decision making about her care and treatment. She also undergoes a "dress rehearsal" the day before surgery so that she and her family will know exactly what to expect each step of the way on the day of surgery and well into her recovey. We focus on the transformation process for which the woman's biggest step is the surgical intervention she will undergo. Using the expression "transformation surgery" sets the stage for positive thinking. Nurses in the preop area are compassionate while still being upbeat about the surgery the patient is going to undergo that day. OR nurses are supportive and caring. The recovery room nurses probably have the greatest challenge however --- doing away with the old nursing behaviors of mourning with the patient, feeling sorry for the patient, and speaking down to the patient. At Hopkins, when the patient arrives in the ambulatory surgery recovery room following her mastectomy surgery she is greeted by her recovery room nurse who is upbeat, positive, and welcoming her to the recovery room. Propophal is used as the anesthetic agent which is short acting and reduces the hangover commonly found with traditional general anesthesia. Preoperatively in the preop waiting area she had received zofran and decadron to reduce the possibility of nausea and vomiting to less than 2%. When I see the patient in the recovery room I immediately congratulate her on having completed her transformation surgery! She is up in a lounge chair once vital signs are stable and her family comes back to begin celebrating her survivorship with her. Depending on the size of her tumor, status of her lymph nodes, and other factors, she may need additional adjuvant therapy to complete her transformation from victim into survivor, but her biggest step has been taken today. Rather than asking the patient if she is in pain she is asked if she is experiencing discomfort. The surgeon is also upbeat when talking with the patient and family, promoting the concept of celebrating her survivorship and the completion of her first major step toward the team's shared goal - her long term survival. Johns Hopkins Breast Cancer Survivor Volunteers are also on hand from the start, when the patient initially gets the news of her diagnosis. The patient is matched to a survivor volunteer who is close in age, share the same stage of disease, and has already completed the same treatment plan that this newly diagnosed patient is about to embark upon. These survivor volunteers remain in touch with the patient for as long as the patient wishes which usually is threw to the completion of all treatment. A core group of these volunteers also assist me with the creation and distribution of gift bags and baskets, known as comfort bags, which the patient receives as a surprise in the recovery room when she awakens. It is filled with items donated to the survivor volunteers which will bring the patient comfort --- potpourri, Avon products, bubble bath, body lotion, gift certificates for a facial, and a special book written by the survivor volunteers filled with good advice, words of wisdom, optimism, humor, and prayers. Something we have anecdotally noted and would like to formally study, is that women who embrace this concept of the "transformation process" seem to do better throughout the rest of their breast cancer treatment, experiencing less side effects of adjuvant treatment and less anxiety and stress short and long term. Two years after my left sided mastectomy I needed to undergo a second mastectomy, also without reconstruction. It is not uncommon for someone to ask me, "Don't you get upset when you get up in the morning, get in the shower, look down and see that your breasts are gone?" I respond and say, "No, because I get up, get in the shower, look down and see that the cancer is gone. My glass is half full, not half empty." If you are in a position professionally or personally to spend time with women diagnosed with breast cancer, I hope that you will consider taking this new transformation approach. And remember, the next time you are looking into the eyes of a woman newly diagnosed with breast cancer, you might be looking in your bathroom mirror. Waking Up Transformed by Lillie Shockney, R.N. was published by Nursing Spectrum, Vol 9, No 20, October 4, 1999. Lillie Shockney RN, BS, MAS, Education and Outreach Director at Johns Hopkins Breast Center, is the author of Breast Cancer Survivors' Club and co-founder of the national nonprofit organization Mothers Supporting Daughters with Breast Cancer.