Susan Leigh, RN, BSN and
Norma Webb, RN, MS, MSN
Susan Leigh is a cancer survivorship consultant, and President, National
Coalition for Cancer Survivorship, Tucson, Ariz, and Norma Webb is a nursing
instructor; Mott Community College, Flint, Mich.
Reprinted with permission
from the publisher
Copyright 1994, Meniscus Health Care Comm., a division of Meniscus Limited.
Innovations in Oncology Nursing - Vol 10, No 1, 1994
Because of my professional career in oncology nursing and my personal involvement with the survivorship movement, specifically the National Coalition for Cancer Survivorship (NCCS), I was able to gain access quickly to a wealth of people and resources. I promptly saw or spoke with physicians whom I knew and respected and who helped me make the difficult decisions surrounding my therapeutic options. This time around, my family and friends were more experienced in being supportive, and readily fit into the game plan. Also, I tapped into the myriad of women who had "been there." They listened to my concerns, answered my questions, offered advice on communicating and decision making, showed me their incisions and reconstructions, and simply were available if I needed them. I thought everything was under control.
After much deliberation and soul-searching, I decided to have bilateral mastectomies (one for prophylaxis) with the placement of tissue expanders. My treatment options were limited because of previous chemotherapy and radiation therapy for the lymphoma, and no one could give me any data on risk factors for contralateral breast involvement.
My physicians were so encouraging and optimistic about immediate reconstruction that it seemed like a relatively easy decision to make. As a matter of fact, having options for reconstruction actually helped me make the arduous decision to have both breasts removed, and almost seemed like a reward after dealing with the cancer-related issues. I so much wanted something to be "easy" in the midst of this horrific ordeal, and an aesthetic outcome was tantalizing. Also, I could regain a bit of control of my life and have some fun selecting the size of my new breasts. It seemed too good to be true.
This was all happening around the end of 1990 and the first few months of 1991. After my painstaking deliberation and final decision to have surgery and immediate reconstruction, all hell broke loose concerning the safety of silicone implants, especially those coated with polynrethane foam. These, of course, were the preferred choice of my plastic surgeon, and he was not a "happy camper" with my questioning the safety of his favorite implants.
For nearly a decade, the FDA had been collecting complaints associated with the use of silicone implants that included leaking, rupturing, hardening, inflammation, and possible autoimmune diseases. It wasn't until late 1990 that the government finally held the first hearings on the safety of this product. [1] The media pounced on the opportunity for a sensational expose, and Connie Ghung and 60 Minutes both did stories on implants soon after the initial hearings.
Being the information addict that I am, I had a great need for facts, figures, data, statistics -- anything and everything to help take the guesswork out of resolving this dilemma --but this would be no simple task. When I questioned my plastic surgeon about options other than silicone implants, he became rabid in his defense of the allegedly untested devices and attacked me for seeking information and challenging his opinions. I was so angered by his verbal assault and arrogant attitude that I felt compelled more than ever to research this issue.
What was supposed to take only months now turned into years. I was not going to rush my decision. Therefore, I saw all the television specials and read all the newspaper and magazine articles I could find. l received newsletters and updates from the American Society of Plastic and Reeonstructive Surgeons (ASPRS). I called a consumer group, the Command Trust Network, and was placed on their mailing list. I spoke with the manufacturers of implants, and received printed materials from one and nothing from another. I continued exploring the pros and cons surrounding this issue by speaking to women who had various types of implants, had chosen other reconstructive procedures, felt comfortable with their external prostheses, or had decided to do or wear nothing at all. Their decisions were personal and individualized, and could serve as points of reference for me. Yet with all this information, I still could not make my own final decision.
What I really needed was a plastic surgeon whom I liked and respected and who liked and respected me. I wanted someone who could help me out all the options and conflicting opinions without judgment and sarcasm and could help me make the right decision for me as an individual. That was the missing piece!
Whenever I thought of returning to the surgeon who had told me that I "could always stuff a couple of old socks in a bra" if I did not want to adhere to his recommendations, I cringed with dread and was angry. Here I was advocating for the rights of other cancer survivors, yet I was not advocating for myself. I needed a new physician!
Unfortunately, the surgeon I had was the only one available to me through my funding source. This meant I had to pay "out of pocket" to change physicians and complete my surgery, yet this was the best decision I had made in 2 years. I found another plastic surgeon who was not only technically and artistically skilled, but was kind, compassionate, a good listener, and appreciated my questions and concerns. We were definitely on the same wavelength. By reviewing my medical history, the surgical options, my financial considerations, my lifestyle, and my preferences, I decided, and he concurred, to complete my reconstruction with saline implants. So I refinanced my house, pulled out some cash, and completed my reconstruction as an outpatient. I have been thrilled with the outcome ever since. I now have a maintenance-free chest and can utilize my energies in other ways.
Bruning suggests some decision-making steps related to reconstruction. (Since this book was obviously spawned by the implant controversy, unfortunately it was not available when I was doing my decision-making.) First and foremost is choosing the right surgeon. When I initially suspected that there might be a compatibility problem with the first plastic surgeon, I tried to convince myself that I only needed someone who was good with a knife, that I really did not need to talk with him. Wrong! That may have been the case before the silicone controversy, but it definitely is not the case now. We need surgeons who are both skilled technicians and artists and who are people we like and trust.
Next, make an informed decision. Gather information about the types of implants and surgical procedures, weigh the risks and benefits, review personal and family health histories (especially in relation to breast cancer and autoimmune diseases), get questions answered, and take time in deciding. Although the controversy surrounding implants made it much more difficult for me to make my decisions, I am grateful to the women who made it an issue. Rather than blindly abdicating all control to the physician, I was able to research the situation as it pertained to me and to make a more informed decision based on that information.
Lastly, women must know why they made their decisions and why they opted for reconstruction. Bruning stresses that anyone deciding on this type of surgery must have realistic expectations and do it for herself. The new breasts will never be exactly like the original models, but they can come pretty darn close and sometimes even be an improvement.
Every woman in this situation must realize that she has some kind of choice--whether it pertains to physicians, surgical procedures, information, or prostheses--so that she can feel confident and comfortable with the decision she finally makes. The consumers must continue to speak up and have their voices heard, for they can make major contributions to our changing health care system.
During the diagnostic process, my reactions were all over the emotional scale. Initially, the nurse's discovery of the lump did not alarm me, as I had had "lumpy breasts" before. I continued to feel comfortable about the lump after the mammogram was negative; however, I became concerned when my physician called me to come in for another breast check because of the discrepancy between the nurse's finding and the mammogram result. After examination, the physician referred me to a surgeon "just to be safe." Then my anxiety level rose considerably: the possibility of a malignant diagnosis was beginning to emerge. A negative needle biopsy relieved my fears briefly.
Following excisional biopsy I received a phone call from my surgeon, which I returned from my college office. "I'm very sorry to tell you that the tumor was malignant, and I recommend a modified radical mastectomy with immediate reconstruction," he said. After hearing the diagnosis, I was numb. Terror took over as my mind flashed back to 1960 and my grandmother's short, unsuccessful battle with late-stage breast cancer. The recent grief (2 months previously) of my father's sudden death seemed to blend with my new cancer diagnosis to produce yet another major grieving crisis for family, friends, and me. At the copy machine, I matter-of-factly told some colleagues, "I have breast cancer and my breast must come off." I then headed to my classroom to give a final exam. Fifteen minutes into the exam my emotions caught up with reality, and I knew I could not finish my workday. A colleague graciously took over my classroom, and I went home in great emotional pain to grieve the probable loss of my breast (and possibly my life).
Two days later I stopped crying. Caring people helped me realize that I needed to prepare to make some difficult treatment decisions that would indeed be critical for my future well-being.
Friends and nursing colleagues were generous with their support and with their treatment suggestions. At the recommendation of a colleague, I sought a second opinion at the breast care center of a major university, an hour's drive away.
Within a week, I had the opportunity to spend a day at the breast care center. On that day, my husband and I were able to meet with several specialists concerned with the needs of women with breast cancer--a clinical nurse specialist, a surgical oncologist, a medical oncologist, a social worker, a dietitian, and a plastic surgeon. In addition, radiologists and pathologists reviewed mammograms, ultrasounds, and pathology slides to confirm my diagnosis. Abundant information was given, and our questions were fully answered. I will always appreciate how everyone stressed the importance of taking time to make the decisions that were right for me.
Based on several factors, the decision for a modified radical mastectomy evolved. The next decision was whether to have immediate reconstruction. (I understood that reconstruction could be postponed until some later date if not done immediately.) Being small-breasted, I had previously considered breast augmentation. Implants to replace the affected breast and augmentation on the other side seemed like a good possibility to me until I talked with the plastic surgeon. He indicated that I would not be a good candidate for implants because I have a history of an elevated antinuclear antibody titer (A 1991 rheumatology workup resulted in a diagnosis of lupus-type syndrome secondary to estrogen administration.)
The plastic surgeon examined me carefully to determine whether the TRAM flap or TRAM free flap would be possible. I am a thin person and have minimal tissue across my abdomen; therefore, the TRAM procedures were not recommended. Latissimus dorsi reconstruction was the only procedure suggested by the plastic surgeon, and he was not strongly in favor of this less fre- quently used method. I left the plastic surgeon's office believing that immediate reconstruction was probably not for me.
Evaluation of other concerns about reconstruction helped to solidify this decision. For instance, fear of anesthesia dating back to an early childhood tonsillectomy resurfaced strongly as I thought about 8 or more hours of anesthesia. The additional scar on my back from the latissimus dorsi procedure was another concern. I wondered about the altered function of the latissimus dorsi muscle. In addition, it seemed to me that a recurrence on the affected side might be more difficult to identify with reconstruction in place. Finally, I was somewhat influenced by a friend who expressed dissatisfaction with her reconstruction and indicated that if she had to do it over again, she would not choose the procedure.
Perhaps the strongest positive influence in my final decision to forego immediate reconstruction was a friend who had had a mastectomy 1 year previously. She seemed to enjoy showing her "perfect scar" and demonstrating how well her chest-adherent prosthesis system functioned. This health care peer had returned to all of her preoperative activities, and she chuckled as she displayed some of the lovely lingerie, skimpy bathing suits, and figure- revealing street clothing she now wears. My friend helped to make it clear that one could still feel womanly and attractive, even with a breast prosthesis.
In addition to the support and information I received from friends and health care professionals, Dr Susan Love's Breast Book [2] helped me make my treatment choices. Also helpful were the US Department of Health and Human Services booklets supplied by the National Cancer Institute. Printed materials about breast reconstruction from my plastic surgeon were also valuable in making the decisions about reconstruction.
I went through all phases of the grieving process. Most notable was the denial expressed by early dreams in which my breast had spontaneously regenerated. Anger surfaced as spring became summer, and all I seemed to notice at our sailboat marina were women's breasts, bathing suit cleavage, and revealing tee shirts. Everyone else had breasts and I didn't. Intellectually I knew I had never defined myself by my breasts, and I was the same person with or without them, but depression set in anyway.
Fortunately, I was ready for my prosthesis in early summer (approximately 6 weeks post surgery). The day it arrived was a turning point in my recovery--I was getting on with the rest of my life. I chose a new red silk blouse to wear to the fitting. The blouse enhanced my appearance and it felt great to look "whole" again. I even stopped on the way home to shop, glancing at myself in every mirror I passed. I visited my mother to reassure her I was doing well and to show her my "new" look.
Getting used to a prosthesis takes time and patience. It took me about a month to adjust my personal care routines and to begin to enjoy the advantages of the prosthesis system I had chosen. The chest-adherent prosthesis was much like having new contact lenses; you have to learn the basics of care and then modify them until the care is individualized and comfortable. I coped by using a lot of humor during this adjustment period. (Most examples are not suitable for printing here!)
Soon after my prosthesis fitting I purchased a flattering bathing suit and some lacy, colorful lingerie. (With the chest-adherent prosthesis, regular bathing suits and bras may be used.) Positive feedback from close family and friends and my own observations indicated that I looked as good as or better than before the mastectomy. I began to feel better about myself and to perceive myself as a survivor rather than a victim.
With the unequaled support of loving people, my self-esteem seemed to increase, and my depression declined. For the first time since surgery I was able to discuss openly with my husband my sexual feelings and concerns related to the mastectomy and the prosthesis.
By the end of the summer, other women's breasts were no longer a focal point for my anger, but were just as I had perceived them before my mastectomy-- simply an integral part of a whole person. The prosthesis became a casual, comfortable part of my daily routine. Once in place, the prosthesis seemed to become a stable part of me--giving me confidence and almost comforting me by its presence.
It is in every woman's best interest to take the time to make the treatment decisions that are right for her. Given the same diagnostic and physiological circumstances, I would make the same choices again. At 5 months post surgery I still feel twinges of loss as I bathe myself; but the raw emotional pain of the initial loss has given way to feelings of gentle sadness and a new self-love for the person who is now a thankful survivor.
2. Love, SM. "Dr Susan Love's Breast Book" Reading, MD: Addison-Wesley Publishing Co. Inc. 1990.