The Right to Choose, a Survivor’s Experience with Breast Reconstruction
I was diagnosed with breast cancer in 1992 at age 38. Our daughter, Laura, was twelve. When I told her that I had breast cancer and needed to have a mastectomy, she was distressed. She was worried that her mommy might die. Even more troubling, Laura was upset that my giving birth to her may in some way caused the cancer. She was somewhat relieved, however, when I explained that I had multi-focal disease in Stage I. Giving birth to her at age 26 actually should have helped reduce my risk. I went on to explain that because of my other medical conditions I wouldn’t be permitted to have reconstruction surgery. Instead, I would wear a breast prosthesis and mastectomy bra. She bluntly replied, “That’s okay, Mommy. Your breast is so valuable, it can’t be replaced anyway.” I sat in silence staring at a face that was so much wiser than its years. She was just beginning to learn about the importance of breasts, having been fitted for her first training bra just days earlier. That was when I went bra shopping with her for the first time; actually, for the only time.
I underwent transformation surgery in July of 1992. That’s what my husband called it and is the term I have since adopted. I use that phrase when I am with patients whom I have the privilege to spend time with at Johns Hopkins while they are undergoing breast cancer surgery. Al, my husband, told me “the surgeon’s mission is to transform you from a victim into a breast cancer survivor. You are exchanging your breast for another chance at life and that is a fair trade.” He was right. It was initially hard, however, to look down and see my left foot and toes. It was a sight I hadn’t seen since I was 12 years old. I developed early and, by adulthood, was large busted like my grandmother: 44D. Certainly, part of my self image was tied to my chest. Laura wrote me a poem to remind me of who I am inside and the importance of focusing on my psychological well being. I took pride in realizing that we had reared her well. This is Laura’s poem. She had my husband bring it to the hospital and read it to me as soon as I had awakened from my breast cancer surgery:
Beauty and glamour
Are nice to get
But it’s what’s inside that counts
You must never forget
Six weeks after surgery I was fitted for my breast prosthesis. I was appreciative of how natural they had become. I remembered how unnatural and poor-fitting they were in the early 1970s when I first saw them on patients as a student nurse. I decided to name her. After all, she would become my bosom buddy. I would take her everywhere I go, so she deserved a name. I selected the name “Betty Boob.” My silhouette was whole again and I stood tall once more, all 5’2” of me. I was growing more confident week by week and month by month about my appearance and sexual being. I sent out adoption notices to my best friends to let them know I had gotten Betty. One friend mailed her a gift—a ceramic Christmas ornament in the shape of a baby bottle. Inscribed on it was “Betty Boob’s 1st Christmas, 1992.” It is displayed in our living room year round.
A year later I had a lumpectomy of my remaining breast. Just 11 months after, at age 30, I had another bad mammogram. Betty Boob got a roommate, Bobbie Sue. I chose to have several sets of breast prostheses since I could now be whatever size I wanted to be - an advantage of a bilateral mastectomy patient. Losing the second breast was emotionally harder. I fretted about the impact this loss may have on our sex life and on my self image once again. Laura, now 14, said she was glad it had happened because she worried everyday that the cancer would return and we wouldn’t catch it in time. We had though - Stage 0 this time. A mastectomy, however, was still the surgical recommendation. Again, I mentioned reconstruction options but my history of life threatening complications from general anesthesia (a rare but deadly condition) hadn’t changed. I resolved to be a breastless woman, thankful to be a survivor, and who had a loving husband. That was my focus--- surviving this disease was the priority. Nothing else was important. “It doesn’t matter. Just let me live. I have a child to raise. I must be here for her.” Any thing else would just be gravy. To validate my womanhood and my husband’s love for me, he took me away to the Pocono Mountains (where the honeymooners go) for a long weekend. He said, “I’ve read before when you lose one of your senses like your sense of sight or sense of smell. Your other senses become more intensified. Maybe the same thing happens to your erotic zones. I intend to prove this hypothesis in the next 48 hours.” And he did!
Since 1983, I have worked in a nursing position at Johns Hopkins. After several years of volunteering in the Johns Hopkins Breast Center, I formally joined the faculty as the Director of Education and Outreach in 1997. I had known for some time that I was meant to get this disease. It redirected my nursing career path in line with taking care of other women who ended up wearing the same type of bra I did. I take care of women from all walks of life and all stages of the disease. I counsel patients about their surgical options and discuss with them the pro’s and con’s to assist them with their decision-making. This is of course, if they are fortunate enough to be in a situation to make choices. Most women today can make such health decisions. This also means that I see the surgical outcomes of women post lumpectomy, mastectomy, and mastectomy with reconstruction.
In 1997, after much effort, a federal bill was finally passed to ensure insurance coverage of breast reconstruction as a consequence of breast cancer. I provided testimony to get this bill passed and felt really good about that. In 1998, I held a special fundraiser with proceeds from the event going to cover expenses for Dr. Maurice Nahabedian (fondly known by his patients as Dr. Mo). The purpose of his trip to Europe was to learn a new breast reconstruction method called DIEP flap - deep inferior epigastric perforator. This procedure involves taking tummy tissue and fat but leaving preserved all the muscles. This is accomplished by stripping out of the muscle tiny perforators and reconnecting those blood vessels up in the chest area. This procedure, therefore, is a true transplant. The tummy tissue and fat are molded into a breast and serves as an amazing Memorex version of a woman’s breast. This technique requires learning how to do microvascular surgery. I was thrilled that our patients had a new state-of-the-art option available for them. This new surgery lifted restrictions we previously needed to recommend to women having the traditional TRAM flap procedure (TRAM flap uses the abdominal muscles to reconstruct a breast). As years went by, the surgical outcomes of skin sparing mastectomy with DIEP flap reconstruction became even more impressive to me. Many women reported nerve regeneration. Although different than breast sensation, they did have some feeling restored to their new breasts. Fascinating.
Each year I saw my various oncology doctors. For the first few years I mentioned that I still wanted reconstruction one day. Then, at some point in time, I stopped asking, expecting the doctor(s) to bring it up to me. No one did. “How are you doing?” they’d ask. – “Fine,” I’d say. “Any problems?” they’d reply. “No, not really,” I’d tell them.
We brought on board a new medical director for the Breast Center in March 2002. He was a surgical oncologist who specialized in breast cancer. Having a reputation as a skillful surgeon, he was academically talented and was a wonderful leader and team player. Patients adored him and this was well known. His name was Ted Tsangaris. I saw newly diagnosed patients with him just as I had with our previous medical director. I quickly began learning his routine. For women needing mastectomy surgery, he encouraged consultations with our plastic surgery team to discuss reconstruction options. At first, I worried he was being too forceful about discussing reconstruction options. I soon realized he did have the patient’s best interest in mind. He told me when we discussed this privately that “when a woman is diagnosed with breast cancer, all she can focus on is survival. ‘Let me live. I don’t care if I have breasts or not.’ She probably does care, though. She is born with two breasts and has the right to have two breasts if medically it is safe for her to do so and doesn’t impact her treatment and outcome. Therefore, she should see the plastic surgeon and talk about reconstruction options.” At that moment, I realized that I had yearned to have breasts again but was doing as most of our patients do - I was waiting for my doctors to bring it up to me; not me mention it again to them. The last time I had brought it up to my doctor was in 1998 when I mentioned that Mo was traveling to Europe to learn how to do DIEP flap reconstruction. The response was, “That sounds interesting. Good for him.” What I wanted to hear was, “Is this something you want to possibly pursue for yourself?” I didn’t hear those words, though. And frankly, why should I? I am one of the most assertive women you’ll ever meet. I am down right aggressive when it comes to making sure that our patients needs and desires are addressed and heard. So, no doubt, my doctors expected me to take the initiative and speak up. But I didn’t because I was functioning as a patient and there was, ironically enough, no Lillie Shockney to be my patient advocate and have my desires heard and taken seriously. How ironic.
Wanting DIEP flap reconstruction didn’t mean that I had overcome my anesthesia problems that had prevented me from pursuing anything in 1992. My anesthesia problem had continued to be a problem that I had to work around. (Implants didn’t interest me either.) I wasn’t an ideal candidate for reconstruction anyway, having had multiple abdominal surgeries, as well, making the traditional TRAM flap a bit tricky. I had had five previous abdominal surgeries prior to my diagnosis of breast cancer. Three out of five times I had respiratory arrests immediately following the operation, either in the recovery room or out on the nursing units. No one liked putting me to sleep and no nurse wanted the responsibility to take care of me during this phase of recovery. My father has had similar problems, though not quite as severe. In April 2002, he needed a total knee replacement and I spent a great deal of time with anesthesiology to try to decipher what would be safe to give him so his surgery would go well. He had a six-hour procedure and sailed through it, spending the night in the ICU for precautionary reasons only. This opened the door to discussing with anesthesiology my personal history and what options they may be now able to offer me. A friend on the anesthesia team carefully reviewed my records and determined that sodium pentathol and phenergan given in combination may be the culprit to cause my respiratory system to crash. Propafol would be a good alternative with a 15 second half-life, and an overnight stay in the ICU for observation. Now suddenly, choice had been restored to me. I didn’t have the choice in 1992 or 1994 to do reconstruction with my mastectomy surgeries. I only had desire. I met with Mo Nahabedian and told him I wanted to be evaluated for DIEP flap reconstruction. After examining me and talking with me about my personal situation, he felt I was an excellent candidate.
My brain went into overdrive now. Was it okay for me to pursue this? Did I deserve this opportunity? Was it too late? (I always told my patients it was never too late and that they have the right to be anatomically whole; a woman has the right to choose what is best for her. It was necessary for her to not focus on anything but herself and what she really wanted.) But I was struggling with giving myself permission to pursue it. Who would take care of patients while I would be on medical leave? This haunted me. I rarely took off blocks of time because of this chronic problem - feeling guilty if I had let a patient down while I was away, no matter what the reason.
When I told my husband what I was considering, he became very concerned. “It sounds risky. I don’t want anything to happen to you. I’ve nearly lost you before. Aren’t we okay? I think we have a great sex life. Don’t you? Am I doing something wrong?” I assured him that we were fine. Now I was being offered options – to choose or not to choose reconstruction. I wanted to do it. When I pressed him about this he agreed that he, too, missed my breasts. I prayed about this for many days. What should I do? Is it okay to pursue this? Am I being selfish? I was leaving church one evening and asked God to please give me a sign that it was okay to proceed with the reconstruction surgery. As I arrived to my car and turned on the ignition, playing on the car radio was the song “Sexual Healing.” The first full verse I heard was, “You’re my medicine, come on and let me in. I can’t wait for you to operate.” It was the sign I needed, rational or not! I drove home and announced to my husband that I was going to get on the OR schedule for 6 months from then to do the reconstruction surgery over the Christmas holidays. This would give me 6 months to plan out my work schedule and hopefully recruit help from our survivor volunteer team to pinch-hit for me. Yes, I’m a planner. I wanted to decipher a plan that would have me away from patients the shortest period of time and help ensure those who were diagnosed and treated while I was out would have someone there with them filling my role. I kept my plans a secret from everyone but my husband. A month later I told our daughter, then 22. She worried about the surgery, telling me, “Mom, you look fine as you are.” I had a heart-to-heart with her explaining that just as she enjoys her cleavage now, I missed having my own. I waited until September to tell my parents, who were quite stunned by the news. Dad asked, “Are you doing one or two?” I told him, “Dad, I might do one big one right in the middle - Ms Uni-boob.” He was overwhelmed with everything and simply said supportively, “Okay.”
As the weeks approached to my surgery date, December 5th, 2002, I felt like I was preparing for the birth of a baby. So I began to refer to my future new breasts as ‘the girls.’ “The girls are being delivered December 5th. We will bring them home from the hospital on December 9th.” I started looking at bra ads in the newspaper again. I hadn’t done that for years - ten years to be exact.
I went public with my decision to do delayed reconstruction at the beginning of November, announcing it at our Survivor Retreat and received applause and support for my decision. And just as Mo predicted, breast cancer survivors who had had mastectomies without reconstruction in the past began calling, requesting evaluations for “the same surgery Lillie is having.” I was clearly clueless until then of the impact my own previous breast cancer surgery had had on other women and their decision to have or not have reconstruction.
As I showered the morning of my surgery, I rubbed the bar of soap across my chest for the last time. I had always said that when I looked down in the shower, I didn’t see that my breasts were gone - I saw that the cancer was gone. I realized that soon I would be seeing two healthy surgically created breasts that would be cancer free and remain that way for life, hopefully. Wow. I also realized that every person taking care of me, from checking me in at the registration desk to putting me to sleep, operating on me, and caring for me post op all knew me, worked with me, and several were my closest friends. What an extraordinary journey I was taking with them. I had asked Ted Tsangaris to be with me while I was put to sleep, feeling this would be my most nervous period. He agreed to do so, but exceeded my expectations as a dear friend by serving as Mo’s first assistant in the OR, helping throughout my surgery from beginning to end. The surgery lasted more than 12 hours. Laurel Moore, also a dear friend, was my anesthesiologist who, ironically enough, was with me for my first mastectomy. I requested to listen to the song Sexual Healing as I went under anesthesia.
Once asleep, I knew that my hospital gown would be lifted up to my neck exposing nearly every inch of my body. I prepared typed signs to wear, which were taped to my chest and abdomen - some comic relief for the OR staff. Over my right mastectomy incision it said, “Mo, please super size me.” Over my left mastectomy incision it said, “I’m here for a front end realignment.” And over my navel it said, “Dear Santa, thanks for bringing me cleavage for Christmas.” Undoubtedly the signage brought a laugh to the OR team. I hoped it would reduce their stress a bit as they began working on one of their own Hopkins’ family members. I also realized that this would be for me yet another form of transformation surgery.
With the exception of initial laryngeal edema that was quickly under control in the ICU and sciatica that had flared up from being on the OR table longer than anticipated, I did well and awakened in the ICU with family at my side. Mo and Ted spent the night at the hospital to be doubly sure I did fine and that the circulation to my new breasts continued. (Wouldn’t you know it - a woman’s fantasy is to have two men to sleep with whose focus is on her breasts and I looked like crap and felt like hell. Oh well.)
A Doppler was used hourly to listen to the blood supply in each of my new breasts. It reminded me of listening to a baby’s heartbeat in utero. Wawoosh. Wawoosh. My mother heard a different sound though—wow, wow, wow. She said, “That’s the sound I hear them saying because they are so happy to be here!” I went home on day four with six drains that would stay in for a week. My tummy was flay and tight and initially, if I tried to stand up too suddenly, I felt like my vagina was bungee jumping off my chin. This feeling subsided as a few more days passed.
The day my drains came out and I was able to get in the shower without tubes and devices in my way, I took a bar of soap and slowly washed my new breasts with tears streaming down my face. It was a profound moment. The girls and I were home and doing fine (and they were each capable of holding a bar of soap under their mammary fold.)
Anxious to be back with patients, I returned to work early - at four weeks post-op. Al and I resumed sex at five weeks. (Yes, a little ahead of doctor’s recommendation of six weeks.) We quickly turned into a pair of honeymooners, test-driving my new body often. He told his brother, “I feel like I’m sleeping with another woman and have my wife’s permission.”
Our daughter took me bra shopping - an event that should have been videotaped. Three hours of laughter and twice a few tears. She went through the department store bra sections like Grant went through Richmond, and proceeded to show me what a bra can do for a woman’s breasts today: lift them up, push them together, pull them apart, add a cup size, deepen cleavage - you name it and there is a bra that could do it. And the color choices were amazing. My last experience with bras before mastectomy bras was wearing a Cross Your Heart minimizer bra I had ordered from a catalog. Now I’d be wearing bras that had names, color, and designer configurations that really should come with an operator’s manual. Not to mention the role reversal of my daughter, now 23, fitting her mother for a bra. (I also privately ordered a few items from Frederick’s of Hollywood, too.)
In April, I had my nipple reconstruction done. It was a 22-minute operation with a local anesthetic. I actually had it done between morning and afternoon clinic. For this procedure, my husband had gotten me pink sequenced pasties to wear to mark where I wanted my nipples to go. To prevent prematurely flattening the nipple, it is recommended to not wear a bra for a while. This resulted in me looking like the ‘erotic oncology nurse.’ So I bought callus cushions at the drug store that look like small flat donuts, perfect for sticking over the nipple to protect them. By stacking them and sticking them on, 2 deep, they were level with the tip of the new nipple and fit fine inside a soft cup bra. Great! (Of course without my bra on, my breasts looked like they were going scuba diving, having their goggles already on.)
This summer I’ll have the areola tattooed. I can hardly wait. It’s been four months and I still surprise myself when I look in the mirror. I still smile with joy in the shower every morning when the girls and I get wet and soapy. And perhaps I am even more pleased than most women would be because I have mourned the loss of my breasts, was resolved I would never have them again and was given the gift of choice at long last - to choose or not to choose reconstruction. Was it worth the wait? You betcha. In my case, waiting gave me the opportunity to experience a newer method of reconstruction superior to the traditional flap reconstruction still done throughout most of the country. This newer method along with free flaps has become the standard for Hopkins’ patients and it is a wonderful improvement that has been made over the last decade.
What did I do with Betty Boob and Bobbie Sue, my breast prostheses? I wanted to select someone very special to receive them. I took my time in selecting a patient who would be having bilateral mastectomies without reconstruction. The patient I selected didn’t undergo reconstruction since she had no time for recovery, having 5 young children she was raising, none of which were even her own. (They were born with a variety of medical complications since their mothers were heroin addicts.) She had outpatient mastectomies so that she could get back to the children as soon as possible. She was large busted like myself. She came to the clinic post-op, hunched over wearing a large sweatshirt with her cotton batting breast forms underneath. She was clearly lacking self-confidence in her appearance. I presented her with my breast prostheses and mastectomy bras and properly fit her to ensure they would work for her. She literally wore them out of the Breast Center like a child wearing new shoes from the shoe store. She stood tall and confident again and said, “I think I might be able to catch a man with these.” She hugged me tight for giving her this special gift of an important piece of me - from an important time in my life - my bosom buddies. I realized at that moment as we were embracing that my new breasts were actually hugging my old prosthetic breasts. It was as if my old girls were perhaps saying, “Welcome to Lillie’s. We know you will enjoy your stay. We did. She is full of life and love and energy like no one else we know. You will meet many newly diagnosed women with breast cancer just as we have over the last decade. She will utilize you as she did us - giving women hope and reminding them that this is a disease that is emotionally charged and tests our psyches. We’ll come by to visit periodically with our new owner. Again, welcome.”
Remember that women have the right to choose. It is a personal choice whether to do breast reconstruction or not. It can be done usually at the time of (skin sparing) mastectomy surgery, but also can be done later if necessary or desired. Sometimes we simply have to be reminded that choice is a woman’s right.