Terri from Tuscon, Arizona
DIEP Flap Breast Reconstruction
My name is Terri and I am from Tuscan, Arizona.
I received a phone call from my doctor confirming that the biopsy taken on New Year’s Eve, 2001, was positive for breast cancer in my left breast. Two lumpectomies, 18 weeks of FAC (fluorouracil, adriamycin), and cyclophosphamide) chemo and 6 weeks of daily radiation later I completed my cancer treatments on October 15, 2002. The chemo was the most difficult part for me. I was told at the time that the chemo only increased my chances of non recurrence and survivorship by less than 5%. I was only 47 at the time and strong as well as strong-willed. I had the “bring it on” attitude and more importantly did not want to look back and regret not doing everything I could do to eliminate any possible microscopic cells lurking or from having the cancer return. Our two sons were young, one still at home and one just starting college. I had a lot to live for. I ended up in the hospital with a neutropenic fever from the chemo depleting my white and red blood cells to dangerously low levels. I was being treated at MD Anderson at the time. I remember my oncologist walking into my hospital room as I lay in my bed bald and ashen in color and saying to me, “If we don’t get you on Procrit (red blood cell booster) and Nuepogen (white cell booster) the chemo is going to kill you.”
I made it through both chemo and radiation and in the years following my diagnosis I worked hard to stay healthy and strong. I took Tamoxifen for five years and remember celebrating the day I swallowed that last pill. Each year I went for my mammograms I stopped by Starbucks to treat myself to my favorite latte. One more year… YES! I returned to work and even returned to achieve a lifelong dream of attaining my M.Ed. in January of 2014. I loved being back in school and things were going, as they say, just swimmingly. I had a goal and purpose in mind for my degree when it was completed.
Fast forward to April 2, 2014….
I went for my routine mammogram. The attending physician was at lunch at the time but the resident signed off on my mammogram and I was told I could go home and come back in a year. They assured me the attending doctor would look at it when she returned from lunch. They should have never let me leave the office that day. I was on my way home when I received a phone call from the imaging services asking me to return and that the radiologist would like to speak to me. My hands got clammy as I gripped the steering wheel as I feared what was coming next. My husband was out of the country on business at the time so I was alone. I walked into the radiologist room and she told me the news. She saw what she highly suspected to be a malignant tumor in my right breast. I stared at her in disbelief. My heart was pounding. I have been a teacher and lifelong educator and the first thing I told her while choking back tears was, “Please, please talk to your resident.” She looked at me and said, “I already have.” I really needed to know this was going to be a huge learning day for that young man. She was a kind, compassionate woman who subsequently performed three separate biopsies on me over the next week because it was also found in a breast MRI that I had a mass in my left breast as well. I prepared myself for a double mastectomy.
My breast surgeon ordered that breast MRI to determine the best surgical options. The breast MRI showed lesions on my spine and now they wanted to do a thoracic MRI. That MRI revealed lesions at three different places on my spine and on April 17th with my husband back in the country, we sat in the doctor’s office together to hear the results of the thoracic MRI and heard, “I am so sorry. You are stage IV metastatic.” It was the single, darkest day of my life. They comforted me by saying that they would do subsequent tests, a PET/CT and a bone scan to study the lesions further. That was little comfort while waiting the week to schedule both of those tests. Telling our two sons, my daughter-in-law, my parents, two sisters and nieces and nephews and friends was nothing short of exhausting. I have always said that cancer is an ugly vortex. It does not just suck you into it but everyone else you love and care about goes down with you.
I have always lived a fairly active life. Yes, middle-child, tom-boy of a family of three girls. You get the picture. I continued to play hard even as an adult. This has bearing on my story because I have taken some significant falls, once on a horse, twice on the ski slopes and once on my bicycle. After undergoing the above mentioned scans and viewing reports of those lesions from seven years ago it was inconclusive that they were cancer. They had not changed in size from seven years ago and it was discussed and I believe that they could possibly be a result of those falls. Without doing a bone biopsy, which is very difficult, we would continue to revisit and monitor them through subsequent scans. I cautiously exited from the stage IV metastatic category and marched on to a double mastectomy to remove the tumors in both breasts.
Before my surgery date my surgeon patiently walked me through the process. She was an amazing woman and gifted surgeon in my books and I had great confidence in her skill. Through her, I learned for the first time about DIEP flap surgery. She said it was the preferred method of reconstruction but there was only one surgeon in the town I live in who did the surgery. He had been trained through a fellowship by one of the best doctors in the country but the surgeon in my town worked alone. She said it was an option for me to consider but I needed to get through the mastectomy first and additionally decide if any adjunctive therapy was in my future. They wanted to make sure they got clear margins, there was no lymph node involvement and that I wouldn’t need radiation or chemo before I decided on reconstruction. I was feeling relieved that I was no longer considered stage IV metastatic and having my husband and oldest son with me, we went out to celebrate. The surgeon jokingly told me to go out and work on my belly fat and have some beer in case I decided on reconstruction later. That we did. That conversation with her about DIEP flap roused my curiosity but would have to wait for me to research at a later date. One step at a time….
On May 14th, my surgeon removed my breasts. I became “an amputee with hidden wounds”. I felt so strong and ready the morning of my surgery. I only stayed in hospital for one night and went home less than twenty-four hours after my double mastectomy. I felt this was a true testament to my skilled surgeon. Added to that, the tests came back with positive news. They got clear margins and I had no lymph node involvement. I was out walking the neighborhood with drains in tow within a few days of having my surgery. I only cried one day post surgery after returning home. I looked in the mirror one morning to examine my incisions and drains. I walked out to the room my oldest son was sitting in and clearly stated, “I think I’m just now mourning the loss of “the girls”. My youngest sister, a nurse, flew in to visit me the week I got my prosthetic bra. We injected humor into the experience by trying to come up with a name for my prosthesis. Ethel and Lucy? Thelma and Louise? We finally came up with Sheila and Rita. That is another story for another day. I felt better wearing it but over time I personally grew tired of preparing it to wear, adjusting it and the weight and warmth of it. Additionally, I had to adjust my wardrobe. No more v-neck t’s or anything that was much below my neckline. I had some pretty significant “divots” in my chest, as I called them.
I was ready to do something about those divots and in the weeks to follow I began voraciously researching DIEP flap reconstruction. I think that research class I took for my M.Ed. was paying off. I was looking at abstracts, journal articles and papers that outlined the successes and benefits of the surgery. The curious thing to me was that each time I searched for information on DIEP flap surgeons on the internet up popped PRMA in San Antonio. Who is this group and what makes them the top search result for this procedure among all the plastic surgeons in the country?
The months to follow from June through October had ups and downs. More tests to determine if I was a candidate for chemo, tumor markers and a revisit of the bone scan to see if everything was stabilized. Each time I waited for results it was personally nerve-wracking, to say the least. And each time I had a test, my family marked it on their calendar. Phone calls, texts, emails…. “How ya’ doin’ Momma?” My parents and extended family would call. Again, an exhaustive road of explanations and why I made the decisions I did. They deserved to know but I think they most wanted to hear, “I’m going to be OK based on these decisions I’m making.” It’s all part of the process and when you have the love and support I have had through both of my diagnoses there is no other choice than to let them know what you find out and why you think it’s the best choice for your health. I had the best support team ever in my family and friends!
September 4, 2014, I saw my oncologist and my surgeon. My blood work was all normal as were the tumor markers so I was given the thumbs up for reconstruction. At this point I had already had several conversations with Courtney, the patient liaison at PRMA. What an integral part of this team! She experienced the many ups and downs that I went through since my first phone call to her in mid-summer. The day I could finally call Courtney and tell her I had medical approval on my end to move forward with reconstruction she worked her magic. I had already uploaded my photos and medical information so she asked me which doctor I would prefer to see. I honestly felt like I could have chosen any doctor at PRMA and been pleased but I think my viewing of videos on the web page and careful study of curriculum vitae lead me to Dr. Chrysopoulo. Probably just that British accent!
My consult at PRMA was scheduled for Friday, October 3rd at 9 am. I was called by the nurse the day before we left to review my medical history and records. We flew to San Antonio the day before my appointment and scheduled our flight home for Saturday. It was going to be a quick but very life altering trip. It was breast cancer awareness month and there were pink pumpkins adorning the front office at PRMA when we walked in. The nurses who took my husband and me back were light-hearted but professional and thorough. I donned my gown and shortly afterwards Dr. C walked in. I was sitting in the examining chair and he said to me, “Don’t sit in that chair. It’s too clinical. Come sit over here,” tapping the chair just in front of and opposite from where he would be talking to me. My husband looked at him and asked, “Then why do you have it?” Dr. C. very quickly responded, “Because we’re a doctor’s office. I have to have it.”
Humor! It worked for both my husband and me. We were off to a good start. Then Dr. C. got very serious, pulled his chair up right in front of me, looked me straight in the eyes and said, “You’ve been through a lot, haven’t you?” I replied with a simple, “Yes.” Then he said, “But you look really good.” Again, affirmation of why I was there. All the research that I had done viewing the PRMA website was unfolding before my eyes. Compassion, caring, expertise, confidence and the team work I witnessed as the nurse also became an integral part of the process was evident in this consult. Dr. C. asked me how I found PRMA. My curious and voracious appetite for research was my answer. I told him that I had vetted them carefully but honestly was already 95% sure of my decision to have the procedure done by Dr. C before this one-on-one consult. I explained to him that meeting him personally was the other 5%. He more than fulfilled that requirement. Now I just had to wait for his assessment of my scars, incisions and body make up to see if I was a candidate for DIEP flap surgery.
After a thorough exam, an honest and confident explanation of my options and expected results we were on board. I insisted on meeting Courtney before I left because of the care and compassion she always exhibited in all of our phone conversations. She gave me a big hug, my pink PRMA goodie bag and we left the PRMA office. For the first time that year, my husband and I walked out of PRMA that day with a sense of hope. From that day forward my own sense of purpose and for that matter my sense of humor began to return.
In just a few short days the insurance liaison began putting my paperwork together and before I knew it I had a surgery date, December 1, 2014. I told Dr. C it would be my birthday present since my birthday is December 15. He looked at me, grinned and said I was a bit crazy and mildly masochistic for spending my birthday in reconstruction recovery. I respectfully disagreed! And yes, as you might guess, my friends and family began calling them my “birthday boobs”. Gotta love it.
I began following PRMA and Dr. C on my Twitter account to absorb all the information I could but in reality, it made me feel like I was now part of the team. I also joined the Pink Ladies group via the internet to share valuable information including meeting a recent DIEP flap patient who was able to give me some first-hand insight into the process of recovery. It was so uplifting to hear her positive words regarding her results and experience at PRMA. Flights were booked, car rental reserved and our post surgical place to stay was all in place.
I contacted Courtney and told her I was interested in becoming a patient liaison because I felt it important to share my experience of traveling to have this procedure done. It did seem like a logistical challenge before I started making all of the travel arrangements but it was also empowering and a very integral part of the process. I want others to know that if you don’t live in San Antonio this is completely do-able and the place to come for this procedure.
We left for San Antonio the day after Thanksgiving, 2014. My husband had one week of vacation left after our hectic and difficult year so he would be with me the week of surgery and my stay in the hospital. My best friend would then fly in from Seattle to stay with me the week after I was dismissed from the hospital so that I might continue recovery and to have my follow-up appointment with Dr. Chrysopoulo.
We settled into our vacation rental that I found on line just five minutes from the Medical Center. We spent the next two days finding our way around and knowing just where to park and check in the morning of surgery to avoid any unexpected surprises. We also managed to spend an afternoon shopping and walking around the The Shops at La Cantera. It was a good distraction especially with all the holiday shoppers and Christmas decorations lining the beautiful outdoor mall. There are natural feelings of fear, excitement and a sense of just wanting to be done and to move on with the healing process. Staying busy and preparing definitely helped ease those fears and anxious feelings.
I texted the ladies that I had met via the PRMA Patient Liaison Face book page and the Pink Ladies group to let them know I was in town. They were so supportive and encouraging and it helped to know that all was going to be well from those who had walked the walk before me. Another lady brought me a shower chair to use while I was in town and a couple of them promised to come visit me in the hospital. That was very special and comforting as we didn’t know anyone in San Antonio. It also made my family back home feel very good that someone would be there wishing me well and checking up on me and offering to help my husband out if need be.
6:30 am Monday morning…. It’s time to just get on with it. My husband and I arrived at the hospital for surgery. After check in and prepping they wheeled me into the pre-op room. Wow! It was a hub of activity. My husband and I looked at each other wide-eyed and I think we were both thinking there might be a bit of a wait. That was not the case. I first met with a nurse who started IV’s. Then the amazing and kind anesthesiologist walked in. She was a tall, slender woman with a broad, warm smile, a beautiful shirt on. She assured me that I was “all hers” that day and that she was going to make sure I woke up without nausea. Thank you Dr. Allen because that was the case! She even managed to play a song on her play list at my request, “End of the Line” by the traveling Wilburys, right before they put me under. So we were rocking out to tunes before my long, winter’s nap.
Another nurse walked in and told us she would be with Dr. C all day in the room and would be keeping my husband updated throughout the day. The best thing she did for me before they wheeled me back was take care of my husband. I was very concerned about him waiting at the hospital that day. I couldn’t imagine how difficult that was going to be although he never once complained about it. She looked at him so compassionately and said, “Where are you staying? There is absolutely no need for you to hang around this hospital today. Go back to your rental apartment and we will call you with updates.” That statement in and of itself helped to relax me.
Dr. Chrysopoulo walked to my bedside in his usual, calm manner with a big grin on his face. He chatted with my husband and then took out the marking pen and began to describe what he planned to do. Because I had radiation on my left side twelve years ago he was very honest and realistic about what he would have to do. He told me that he would need to put a larger flap in that area to accommodate making the breast mound. But, in his quick, skillful eye he also told me how he would strategically place it on the underside of my breast so that it wouldn’t be noticeable when I wore clothing. I remember him quietly looking at it after he marked it and saying, “Yes, I’m happy with that.” That’s all I needed to hear. Those final results after I woke up were absolutely amazing. He explained that he had to remove a lot of scar tissue. For me, just to touch that breast and feel how soft and warm it was even under my arm pit was a true testament to his skill. I haven’t felt that feeling for twelve years.
My husband reminded me several times how “goofy” I was when I woke up. I must have been entertaining to the nurses. I just remember waking up in my room, seeing my husband in the corner as he watched the nurses tend to me. IV’s, lines, oxygen, a pole with the different bags of saline, medication and that oh so wonderful Doppler….. THAT was the best sound ever. They checked it regularly to make sure the perforators were alive and surging. It got stronger and stronger as the week went along. I loved hearing that sound and each time the nurses came in to check it they would nod their heads and smile.
The next five days in the hospital was a blur. I want to wrap up by saying this. This is not a cake walk. You will need a dear friend or family member to be at home or to stay with you if you come from out of town. They will have to help you shower; get up with you in the middle of the night to help you out of bed when you use the restroom. Remember, this is huge surgery and you will need huge, patient help. I am so blessed and grateful I had that. Having said all that, the time also goes by quicker than you will realize. The support at the hospital and in particular at PRMA is outstanding. They are comforting, encouraging and there to help you with any needs you might have. The day I went to see Dr. Chyrsopoulo post surgery to remove drains and stitches is just worth whatever you had to go through for this reconstruction surgery. I am so happy with my results and I haven’t even had stage two revision as I write this story. Dr. C and his nurse Denise gave me a big warm hug that day when I left. We laughed, smiled and wrapped up a most amazing step one to a journey of reconstruction.
I have absolutely no regrets that this was the right decision. I am happy to talk to anyone who is interested in this process. Contact Courtney if you are interested in sharing your questions and concerns and she will give you my contact information. It is the strong women that I connected with who have been through this before me that helped me get through this process. I am happy to pay it forward.
Thank you Dr. Chrysopoulo and PRMA. Now I can just get on with it!